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Cultural factors

The following resources examine cultural and social factors that affect caring situations and relationships.

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'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa

Background: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them.

Methods: We employed a qualitative research design and conducted semi-structured interviews to explore the views and perspectives of parents and caregivers of children with intellectual disability who are not using specialised hospital services. We developed an interview guide to help explore caregivers' and parents' views.

Results: Results revealed that caregivers and parents of children with intellectual disability did not use the intellectual disability service due to financial difficulties, fragile care networks and opportunity costs, community stigma and lack of safety, lack of faith in services and powerlessness at effecting changes and self-stigmatisation.

Conclusion: Current findings highlight a need for increased intervention at community level and collaboration with community-based projects to facilitate access to services, and engagement with broader issues of social exclusion.

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Caregivers' and parents' explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa

Background: Post‐apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition.

Method: We conducted 20 semi‐structured interviews with primary caregivers and parents of children with intellectual disability residing in Khayelitsha, a low‐income setting in Cape Town, South Africa. We used Kleinman's Explanatory Models (EMs) of illness to explore terms used to describe and conceptualize this condition.

Results: Carers' explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. It was reported that there were significant difficulties in accessing services and support, and difficulties with coping in the context of extreme poverty and deprivation.

Conclusions: Current findings highlight a need for collaboration between the biomedical and alternative healthcare systems in educating carers and parents regarding intellectual disability. 

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The effectiveness of parental distraction during children's acute pain: The moderating effect of socioeconomic status

Background: Parental responses to children's pain shape how children interpret and cope with pain symptoms through parental modelling and operant conditioning. Evidence suggests that parental distraction is effective in reducing children's acute pain responses, but findings are inconsistent across pain tolerance, intensity and unpleasantness, and are limited to samples of primarily middle and upper-middle class families. Although socioeconomically disadvantaged families may have fewer psychological resources to cope with pain, no studies have examined whether the utility of parent distraction varies by family socioeconomic status (SES). The current study tested the hypothesis that relations between parental distraction and acute pain responses in children vary by family SES, with children from higher versus lower SES families experiencing more substantial benefits.

Methods: Children's pain symptoms and parents' use of verbal distraction during a cold pressor task were examined in a community sample of 530 twin children aged 7-12 years old and their primary caregivers.

Results: Parental distraction was positively associated with children's pain tolerance and unrelated to intensity and unpleasantness, but these associations are qualified by significant moderation. In families with higher SES, parental distraction was an effective technique in children's pain management, associated with more pain tolerance and less pain intensity and unpleasantness. However, for families with lower SES, these same benefits were not present.

Conclusions: Findings suggest that the effectiveness of parental distraction for children's acute pain may depend on family SES.

Significance: Study findings suggest that the effects of parental distraction on children's responses to an acute pain task vary by family SES. Although parental distraction may be effective for higher SES children, further research is needed to identify whether and why distraction may not be beneficial for lower SES families. 

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Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

Aim: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.

Method: Caregivers of children with Dravet syndrome in four countries (Australia [n=8]; USA, UK, and Italy [all n=4]) participated in 1-hour qualitative telephone interviews, identifying key Dravet syndrome concepts. Interviews were recorded, transcribed, and, where necessary, translated into English for thematic analysis. Conceptual saturation was assessed and findings compared to the previously developed French conceptual disease model.

Results: The most common seizure types reported by caregivers were tonic-clonic, absence, or focal-impaired awareness (localized/partial). Fever and physical activity were the most commonly reported triggers. Patient-relevant impacts included impairment in cognition, motor skills, communication, social skills, and behavioural functioning. Caregivers consistently reported negative social, physical, and family impacts. Concepts identified in the interviews showed similarity with the French conceptual model. Minor differences between countries are likely to reflect variations in health care systems.

Interpretation: Findings in Italy, Australia, UK, and USA confirm that the key impacts of Dravet syndrome on children and caregivers identified in France are generalizable across countries. Key symptom and impact concepts relevant to children and parents should be targeted as critical outcomes in new therapy evaluations.

What This Paper Adds: Relevance of the impact of Dravet syndrome on children and caregivers was confirmed across countries. Patient and caregiver-relevant Dravet syndrome impacts contribute to poorer health-related quality of life. Indirect seizure impacts were reported to be as important as direct impacts. Country-specific differences in concepts probably reflect differences in health care systems. 

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Discordant retention of HIV-infected mothers and children: Evidence for a family-based approach from Southern Mozambique

It is often assumed that children and their caregivers either stay in care together or discontinue together, but data is lacking on caregiver-child retention concordance. We sought to describe the pattern of care among a cohort of human immunodeficiency virus (HIV) infected children and mothers enrolled in care at the Manhiça District Hospital (MDH).This was a retrospective review of routine HIV clinical data collected under a larger prospective HIV cohort study at MDH. Children enrolling HIV care from January 2013 to November 2016 were identified and matched to their mother's HIV clinical data. Retention in care for mothers and children was assessed at 24 months after the child's enrolment. Multinomial logistic regression was performed to evaluate variables associated with retention discordance.For the 351 mother-child pairs included in the study, only 39% of mothers had concordant care status at baseline (23% already active in care, 16% initiated care concurrently with their children). At 24-months follow up, a total of 108 (31%) mother-child pairs were concordantly retained in care, 88 (26%) pairs were concordantly lost to follow up (LTFU), and 149 (43%) had discordant retention. Pairs with concurrent registration had a higher probability of being concordantly retained in care. Children who presented with advanced clinical or immunological stage had increased probability of being concordantly LTFU.High rates of LTFU as well as high proportions of discordant retention among mother-child pairs were found. Prioritization of a family-based care model that has the potential to improve retention for children and caregivers is recommended.

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Perspectives of Afghan refugee mothers on the experience of caring for a child with cancer: a qualitative analysis

Background: Cancer in children causes many challenges for the family. When a refugee family experiences it, its impacts may be different and more specific considerations for care may be needed.

Aims: This study aimed to explore the experiences of Afghan mothers living in the Islamic Republic of Iran who had a child with cancer.

Methods: This was a qualitative study, conducted in 2017, of Afghan refugee women with children diagnosed with cancer and referred to a cancer referral hospital in Tehran; they were selected through purposive sampling. Face-to-face, semi-structured and in-depth interviews were conducted for data collection until data saturation was reached. Conventional content analysis was done. MAXQDA 10 was used for organizing the data.

Results: Nine Afghan mothers were interviewed. They were aged 24-44 years and the children were aged 2-9 years. A primary theme called "passive acceptor" was found with five subthemes: chronic suffering, health issues, lack of skills, maladaptive coping and enthusiasm. The mothers were struggling to cope with the challenges of caring for a child with cancer both financially, physically and emotionally.

Conclusion: In spite of many issues in common with similar groups in other countries, Afghan mothers appear to need to greater assistance when it comes to seeking help and understanding for the care for their child with cancer, possibly because of cultural barriers to self-empowerment. Tailored care plans are recommended for Afghan refugee mothers in the Islamic Republic of Iran.

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Native Hawaiian Caregivers' Cultural Perspectives of Pediatric Asthma Management

Asthma remains the leading cause of chronic respiratory illness among Native Hawaiian children 0 to 17 years in Hawai'i. The National Asthma Education and Prevention Program (NAEPP) established asthma management guidelines which includes medical assessment and monitoring, education in partnership with the caregiver, control of environmental triggers, and medication adherence (National Asthma Education Prevention Program [NAEPP], 2007). However, these guidelines do not consider the worldview, health beliefs, and cultural practices of caregiver, child, and family. The purpose of this study was to describe how Native Hawaiian caregivers manage pediatric asthma, to understand which strategies are considered cultural practices, and to identify other cultural practices used to manage asthma. Eighteen interviews with self-identified Native Hawaiian caregivers of school-aged children between the age of 5 and 12 with a diagnosis of mild-persistent, moderate-persistent, or severe-persistent asthma were conducted. Interviews used a talk story approach to understand how the child's asthma was managed and to identify cultural practices the caregivers were aware of and used to manage pediatric asthma. Interviews were audio recorded and transcribed. A thematic form of inductive content analysis was used to analyze the data. Each transcript was independently reviewed and coded. The codes were then categorized and themes and subthemes emerged. Multiple coders validated the identified themes. Two overarching themes and six subthemes emerged from the analysis. The themes included asthma and its causes, physical activity, and management strategies. Native Hawaiian caregivers in this study believed that asthma was caused by heredity and environmental exposure. Asthma management strategies included using alternative therapies, responding to asthma symptoms, and preventing asthma symptoms. Awareness of cultural practices was readily discussed by caregivers. However, cultural practices such as la'au lapa'au (herbal medicine) and lomilomi (traditional massage) were seldom, if ever, used. Caregivers reported that they lacked the knowledge of and how to properly use such cultural practices as a treatment for asthma. Future research should explore the role and influence cultural beliefs have on health practices and the role and influence of the community one lives as it relates to asthma management.

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Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life

Aim: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).

Method: This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding. Logistic regression analysis explored factors (socio-economic characteristics, severity of CP, and feeding difficulties) associated with being underweight. Linear regression was undertaken to assess the relationship between caregiver QoL and child malnutrition and feeding difficulties.

Results: Poor nutritional status was common: 65% of children aged under 5 years were categorized as underweight, 54% as stunted, and 58% as wasted. Reported difficulties with child's feeding were common and were associated with the child being underweight (odds ratio 10.7, 95% confidence interval 2.3-49.6) and poorer caregiver QoL (p<0.001). No association between caregiver QoL and nutritional status was evident.

Interpretation: Among rural, low resource populations in Ghana, there is a need for appropriate, accessible caregiver training and support around feeding practices of children with CP, to improve child nutritional status and caregiver well-being.

What This Paper Adds: Malnutrition is very common among children with cerebral palsy in this rural population in Ghana. Feeding difficulties in this population were strongly associated with being underweight. Feeding difficulties were associated with poorer caregiver quality of life (QoL). Child nutritional status was not associated with caregiver QoL. 

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Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility

Aim: Describe and compare the caregiver strain experienced among Indian mothers of children and young adults with cerebral palsy (CP) living in low resource settings.

Methods: 62 consecutive children and young adults with spastic CP (mean age 6.0 +/- 4.5, range 2-21) and their parents were recruited from an outpatient physiotherapy department for this cross-sectional study. Ability to walk was classified using the Gross Motor Function Classification System and mother's caregiver strain was measured using caregiver strain index (CSI).

Results: Mothers of children and young adults who have limited self-mobility perceived higher caregiver strain (mean CSI score 12.0 +/- 1.3, p <0.05) than mothers of children who can walk (mean CSI score 4.5 +/- 3.0, p <0.05). All 46 mothers of children and youth in GMFCS levels IV and V reported high levels of caregiver stress compared with only three of 16 mothers of children and youth who walk (levels I and II).

Conclusions: Physiotherapists and occupational therapists serving children and youth with CP are encouraged to partner with families to identify goals for ease of caregiving, activity, and participation at home and in the community.

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Impact of Race and Socioeconomic Status on Psychologic Outcomes in Childhood Cancer Patients and Caregivers

Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (β=0.49; P<0.001) and brain cancer diagnosis for their child (β=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.

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Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness: A Review

Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. 

Observations: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.

Conclusions and Relevance: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

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Case-Based Insights: Arab Muslim Mothers' Experiences of Managing a Child Newly Diagnosed With Type 1 Diabetes Mellitus

Mothers frequently fulfill the role of primary caregiver for children diagnosed with type 1 diabetes mellitus (T1DM). A T1DM diagnosis has a significant impact on the child and the wider family unit. The objective is to develop understanding of mothers' experiences caring for children diagnosed with T1DM in the cultural context of the Middle East to facilitate enhanced health service provision and support. This study used a qualitative design. Data were collected in individual semistructured interviews. Participants were mothers of Arabic descent and Muslim belief who had a child diagnosed with T1DM within the last 12 months. All mothers were registered at the health service where this research was conducted and resident in the United Arab Emirates at the time of this study. COREQ guidelines informed reporting of the research and findings. Participating mothers described initial reactions of shock and disbelief, followed by transition to near ordinary and near normal ( 85% normal ) family functioning. Family, culture, and faith emerged as critical supports in the whirlwind daily challenge of balancing the multiple demands and competing needs of the newly diagnosed child and the broader family. This study is the first of its kind from countries comprising the Gulf Cooperation Council. The findings provide insight into the challenges and support needs of mothers caring for children newly diagnosed with T1DM in an Arab Muslim context. The findings also provide a basis for enhancing health service support and suggest themes to inform further research.

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Trajectories of poverty and economic hardship among American families supporting a child with a neurodisability

Background: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing.

Methods: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time.; Results: Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship.

Conclusions: The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course. 

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Psychosocial Risk Profiles Among American and Dutch Families Affected by Pediatric Cancer

Objective: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families.

Methods: Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs. 

Results: Four groups were identified: "Low-Risk" (n = 162) defined by generally low risk across domains; "Moderate-Caregiver" (n = 55) defined by elevated Caregiver Stress Reactions domain; "Moderate-Children" (n = 25) defined by elevated Child Problems and/or Sibling Problems, and "Elevated-Risk" (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups.

Conclusion: The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.

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The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

Parents of children with autism are faced with higher risks of unemployment, divorce, and poorer mental health than parents of children with other disorders. Such parenting stress can be further exacerbated by cultural and environmental factors such as the more conservative and collectivistic Asian values. Therefore, this review identifies and synthesizes literature on the parenting experiences and needs of Asian primary caregivers of children with autism using a critical interpretive method. A qualitative meta-summary was conducted. Seven electronic databases (CINAHL, Embase, ProQuest, PsycINFO, PubMed, Scopus, and Web of Science) were searched from each database's date of inception to November 2018. In total, 44 studies were included in this review. Thirteen studies examined Asian immigrant parents' experiences, and 31 studies were done among Asia-based parents. Six domains were identified: "personal parenting journey"; "adaptation and coping strategies"; "family, community, and social support"; "experiences with healthcare, education, and social services"; "future hopes and recommendations"; and "unique experiences of immigrants." The distinctive influence of religious beliefs, cultural values, and environmental factors on Asian parenting experiences were discussed, and recommendations were proposed to better meet the needs of parents with autistic children. 

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Oral health care for children and adolescents with cerebral palsy: perceptions of parents and caregivers

The aim was to evaluate the oral health care of children/adolescents with Cerebral Palsy (CP) according to severity through the perceptions of parents/caregivers. A case series study was conducted at health services in the state of Pernambuco, Brazil with 94 mothers/caregivers of subjects with CP from 5 and 18 years old. Sociodemographic factors, oral health care and use of dental services (DS) were evaluated. The Gross Motor Function Classification System showed 67% with severe motor impairment. Subjects with severe CP had significantly higher frequencies of belonging to families with lower income (89%, p < 0.001), living in the interior (44%, p < 0.005), having transportation difficulties (60%, p = 0.04), difficulty regarding access to DS (88%, p = 0.009) and a greater need for oral hygiene (67%, p = 0.008), which was performed exclusively by the caregiver (94%, p < 0.001). Despite identified access barriers, dental care was facilitated for those with severe CP, early DS use, but low availability of dentists and low degree of humanization were cited as major problems. These results reveal problems related to daily oral health care, family living context, institutional support and quality of DS that should be addressed in comprehensive, inclusive, equitable social and economic public policies.

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Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Methods: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.

Results: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.

Conclusions: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.

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Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy

Background: Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. However, there is a scarcity of documentation of the various sources of burden in low- and middle-income settings. 

Methods: We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers.

Results: At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child's condition. Due to the difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for the treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were major sources of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar burden.

Conclusion: Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and non-inclusive public policy, which need to be addressed to improve the quality of life of caregivers.

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Factors influencing nurse-to-parent communication in culturally sensitive pediatric care: a qualitative study

Background: To deliver quality healthcare to diverse patients, effective commmunication is key. Little evidence exists about what factors influence nurse-to-parent communication in culturally sensitive pediatric care. Objective: The aim of this study was to explore factors that influence nurse-to-parent communication in the provision of culturally sensitive pediatric care. Design: This study employed a qualitative content analysis.

Method: The participants included 25 nurses and 9 parents from pediatric wards of hospitals located in Northwest and Central Iran. Semi-structured interviews were conducted. Data were analyzed using Graneheim and Lundman's method of content analysis.

Results: Factors that influenced the nurse-to-parent communication in pediatric culturally sensitive care were 1-organizational factors (inefficient policies and professional factors) and 2-human factors (nurse-related factors and unique characteristics of the family). Subcategories included: lack of definitive policies for delivering cultural healthcare, insufficient cultural healthcare education, professional status of nursing in society, time, individual characteristics, cultural knowledge, cultural differences, and family's health literacy.

Conclusion: The Iranian healthcare system requires a paradigm shift regarding the provision of culturally sensitive care.

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Clinical trials in low-resource settings: the perspectives of caregivers of paediatric participants from Uganda, Tanzania and Kenya

Objectives: Vaccine clinical trials in low-resource settings have unique challenges due to structural and financial inequities. Specifically, protecting participant and caregiver autonomy to participate in the research study can be a major challenge, so understanding the setting and contextual factors which influence the decision process is necessary. This study investigates the experience of caregivers consenting on behalf of paediatric participants in a malaria vaccine clinical trial where participation enables access to free, high-quality medical care.;

Methods: We interviewed a total of 78 caregivers of paediatric participants previously enrolled in a phase II or III malaria vaccine clinical trial in Uganda, Tanzania and Kenya. Interviews were qualitative and analysed using a thematic framework analysis focusing on the embodied caregiver in the political, economic and social reality.

Results: Caregivers of participants in this study made the decision to enrol their child based on economic, social and political factors that extended beyond the trial into the community and the home. The provision of health care was the dominant reason for participation. Respondents reported how social networks, rumours, hierarchal structures, financial constraints and family dynamics affected their experience with research.

Conclusions: The provision of medical care was a powerful motivator for participation. Caregiver choice was limited by structural constraints and scarce financial resources. The decision to participate in research extended beyond individual consent and was embedded in community and domestic hierarchies. Future research should assess other contexts to determine how the choice to participate in research is affected when free medical care is offered.

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How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review

Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers of disabled children from various contexts published between 1995 and 2015. It uncovers a significant knowledge gap on the impact of poverty despite slowly emerging evidence on how political, cultural and socioeconomic exclusion stifles parents to enhance their families' wellbeing and possibly reap the benefits of development policies. Implications for future research are addressed.

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Identification of Caregiver-Reported Social Risk Factors in Hospitalized Children

Objectives: Although health systems are increasingly moving toward addressing social determinants of health, social risk screening for hospitalized children is largely unexplored. We sought to determine if inpatient screening was feasible and describe the prevalence of social risk among children and caregivers, with special attention given to children with chronic conditions.

Methods: Caregivers of pediatric patients on the hospitalist service at a children's hospital in the Pacific Northwest completed a social risk survey in 2017. This survey was used to capture items related to caregiver demographics; socioeconomic, psychosocial, and household risks; and adverse childhood experiences (ACEs). Charts were reviewed for child demographics and medical complexity. Results were tabulated as frequency distributions, and analyses compared the association of risk factors with a child's medical complexity by using χ 2 tests.

Results: A total of 265 out of 304 (87%) caregivers consented to participate. One in 3 families endorsed markers of financial stress (eg, difficulty paying for food, rent, or utilities). Forty percent experienced medical bill or insurance troubles. Caregiver mental health concerns were prevalent, affecting over one-third of all respondents. ACEs were also common, with 38% of children having at least 1 ACE. The presence of any ACE was more likely for children with chronic conditions than those without.

Conclusions: We found that social risk screening in the inpatient setting was feasible; social risk was uniformly common and did not disproportionately affect those with chronic diseases. Knowing the prevalence of social risk may assist in appropriate alignment of interventions tiered by social complexity. 

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Perceptions of Unmet Cultural Needs: Punjabi Families' Challenge to Maintain Culture and Identity within Pediatric Medical Settings

The hospitalization of a child is a very tumultuous time for the caregiver. Going through the entire process of hospitalization from being admitted, to the diagnostic process, can be overwhelming to understand for caregivers. For caregivers who are not familiar with the American medical system, this process is even more unsettling and stressful. The purpose of this study was to examine culturally competent practices within the pediatric medical setting from the perspective of Punjabi families. Data was collected through semi-structured interviews of four caregivers who experienced the hospitalization of their child. Results of this study indicated that cultural competence was represented in a myriad of instances centering around staff interactions with the families. Additionally, this study demonstrates the importance of culturally competent practices and the effects it has on the caregiver’s ability to cope with the hospitalization of their child. Furthermore, this analysis of culturally competent care explains the importance of these practices to be implemented by child life specialists as it helps to establish the foundation of rapport with children and their families.

Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder

Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.

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Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.

Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.

Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.

Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

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Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study

Background: Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. Methods: In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed. Findings: We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was −36% (95% CI −94 to 594; p=0·707). Interpretation: Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified. Funding: Wellcome Trust; National Institute for Health Research; and EMMS International. 

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More GP contacts and poorer health of informal caregivers with low socioeconomic status in Germany: Results from the population-based DEGS1 and the cross-sectional GPCare-1 study

Objectives: Informal caregivers are known to have poorer mental health. Risk factors for caregiver burden include low education, female gender, cohabitation with the care recipient and lack of resources. General practitioners (GPs) have an important role in supporting caregivers. Methods: Drawing on data from two surveys, associations between caregivers' socioeconomic status (SES), psychophysical health and GP contacts are analysed. Design Cross-sectional study. The study draws on data from two surveys (German Health Interview and Examination Survey for Adults, DEGS1 and General Practice Care-1, GPCare-1). Setting Germany. Participants DEGS1: German general population (18+ years) n=7987. GPCare-1: general practice patients (18+ years) n=813. Primary outcome Psychophysical health, GP contacts and communication. Methods Using representative DEGS1 data, the prevalence of informal caregivers, caregivers' burden, chronic stress, various health conditions and frequency of GP contacts were evaluated stratified by SES. Data from the GPCare-1 study addressed caregivers' experiences and communication preferences with GPs. Results: In the DEGS1, the prevalence of caregivers was 6.5%. Compared with non-caregivers, caregivers scored significantly higher for chronic stress (15.45 vs 11.90), self-reported poor health (37.6% vs 23.7%) and GP visits last year (3.95 vs 3.11), while lifestyle and chronic diseases were similar. Compared with caregivers with medium/high SES, those with low SES had a significantly lower prevalence of high/medium caregiver burden (47.9% vs 67.7%) but poorer self-reported health (56.9% vs 33.0%), while other characteristics did not differ. In the GPCare-1 study, the prevalence of caregivers was 12.6%. The majority of them felt that their GP takes their problems seriously (63.6%) without difference by SES. Conclusion: Caregivers with low SES constitute an especially high-risk group for psychological strain, requiring special GP attention to support their needs. 

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Male family carers' experiences of formal support – a meta‐ethnography

Background: Men represent a growing proportion of unpaid family carers across Europe. Comparative studies have proposed male carers experience their caring role differently to females; men are less likely to avail of formal support services than women. Social ideas around masculinity have been linked to the help‐seeking behaviours of male carers, as well as men's attitudes around accessing formal support. More understanding about this role from the perspective of male carers is required. Methods: The study followed a meta‐ethnography process starting with a systematic literature search of five electronic databases. The methodological quality of the selected studies was evaluated using the Mc Master checklist. Using NVivo 12 software, primary data were analysed and themes throughout the papers were identified. Results were synthesised as a meta‐ethnography that retained direct quotes from the studies. Results: Two themes and five sub‐themes were developed from the data. The first theme was ‘Men's experiences of formal support’ which contained sub‐themes ‘Reluctance to step back’, ‘A space to share emotions’ and ‘Education diminishes burden’. The second theme was ‘Coping without Formal Support’ with sub‐themes ‘Satisfied without help’ and ‘Duty prevents help seeking’. Conclusions: Fear of perceived failure and a loss of control in the caring relationship were key factors in men's low trust and dissatisfaction with available services. To engage more male carers, formal service providers should acknowledge men's wish to be seen as competent in the care role as well as their desire to stay involved in decision‐making around care for their family member. Support services that were collaborative, education‐based and gender‐sensitive were favoured by male carers.

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Introduction and Psychometric Validation of the Resilience and Strain Questionnaire (ResQ-Care)— A Scale on the Ratio of Informal Caregivers' Resilience and Stress Factors

Background: Informal caregivers are a particularly vulnerable population at risk for adverse health outcomes. Likewise, there are many scales available assessing individual caregiver burden and stress. Recently, resilience in caregivers gained increasing interest and scales started to assess resilience factors as well. Drawing on a homeostatic model, we developed a scale assessing both caregivers' stress and resilience factors. We propose four scales, two covering stress and two covering resilience factors, in addition to a sociodemographic basic scale. Based on the stress:resilience ratio, the individual risk of adverse health outcomes and suggestions for interventions can be derived. Methods: A total of 291 informal caregivers filled in the ResQ-Care as part of a survey study conducted during the second wave of the COVID-19 pandemic in Germany. Exploratory factor analysis was performed. Validity analyses were examined by correlations with the Brief Resilience Scale (BRS), the Perceived Stress Scale (PSS-4) and the Geriatric Depression Scale (GDS-15). Results: The data fitted our proposed four-factor solution well, explaining 43.3% of the variance. Reliability of each scale was at least acceptable with Cronbach's α ≥0.67 and MacDonald's ω ≥0.68 for all scales. The two strain scales weighed more than the resilience scales and explained 65.6% of the variance. Convergent and discriminant validity was confirmed for the BRS and PSS-4, whereas the GDS-15 correlation pattern was counterintuitive. Conclusion: The factor structure of the ResQ-Care scale was confirmed, with good indications of reliability and validity. Inconsistent correlations of the scales with the GDS-15 might be due to a reduced validity of GDS-15 assessment during the COVID-19 lockdown. 

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Incorporating young children into family caregiving for people with dementia in Taiwan

Background: Positive attitudes and appropriate knowledge about dementia are essential for the provision of suitable dementia care. Children as future voters may take on a critical role to increase community awareness and knowledge about dementia. Guided by Chinese filial piety cultural virtues, Taiwanese children are taught to respect and care for family seniors and extend this respect to other seniors. Accordingly, young children are considered part of family dementia caregiving system, despite children rarely assume formal caregiver role and not directly provide care work. However, Taiwanese children may possess stigmatized attitudes toward dementia due to a lack of proper dementia knowledge. Research Objective: This study aims to survey Taiwanese children age 9-11 years old attitudes and knowledge to the concepts of dementia. Methods: A total of 312 Taiwanese children from 8 elementary schools in the south Taiwan, aged 9-11 years old, were surveyed to assess their knowledge and attitudes toward dementia. Participants completed The Kids Insight into Dementia (KIDS), which is a 5-scale questionnaire containing three factors, “Personhood”, “Stigma”, and “Dementia Understanding”. The data was analyzed using quantitative method. Results: The results show that Taiwanese children are unfamiliar with dementia as related to brain disease (M= 3.94, SD=2.91), Taiwanese children are unfamiliar about nursing home provision of care (M=3.97, SD=2.17), Taiwanese children do not know the course of dementia disease (M=3.34, SD-1.39). Participants scored high on the question of “people with dementia have hobbies and interests” (M=4.15, SD=1.22); Participants reported that they agreed less often with stigma attached to the people with dementia, including items of “I would feel a bit scared if I met someone dementia in the street” (M=2.70, SD=1.79), ”people with dementia can be creepy” (M=2.18, SD=1.71), “It would be annoying of frustrating to spend time with someone with dementia” (M=2.15, SD=1.17), “It is unlikely that I would meet someone with dementia” (M=2.36, SD=1.27). Conclusions: Our findings suggest that Taiwanese children may express less stigmatized attitudes toward people with dementia and yet they report less understanding of concepts of personhood of people with dementia. Therefore, dementia education is necessary to increase dementia knowledge among school age children in Taiwan.

 

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Income-related inequalities in informal care: Evidence from the longitudinal healthy longevity survey in China

Objectives: This report aims to examine income-related inequalities in informal care among older people with functional limitations in China. Methods: Data are drawn from the 2005, 2008, 2011, and 2014 waves of the Chinese Longitudinal Healthy Longevity Survey. Erreygers concentration index, concentration index, and horizontal inequity index are used to examine inequalities in informal care. A random effects model is then used to investigate the relationship between household income and informal care. Results: There is no significant association between household income and the probability of receiving informal care. However, we observed a significant positive association between household income and hours of informal care received, indicating that those with higher household income receive more hours of informal care compared to those with lower household income. The degree of this inequality increases as the number of functional limitations increases. Discussion: Lower household income is associated with lower intensity of informal care received, particularly for older people with more functional limitations. Policies are required to support low-income older people with more functional limitations. 

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The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia. 

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The impact of pediatric tracheostomy on the quality of life of caregivers

Objective: Pediatric tracheostomy is a challenge in otolaryngology practice and it is associated with greater morbidity and mortality than in adults; hence, constant vigilance by the designated family caregiver is critical. This study was designed to assess the impact of on quality of life of caregivers in a homecare setting as a result of the presence of child with a tracheostomy. Methods: This was a combined retrospective and prospective cohort study with caregivers of children younger than 16 years who had undergone a tracheostomy, had been discharged home with a tracheostomy tube and completed 6 months of domiciliary tracheostomy care. The consenting primary caregivers were assessed for their quality of life based on the PedsQL v 4.0 questionnaires across various domains. Results: We identified the primary caregivers of 85 children who had undergone a tracheostomy during the study period. The children's median age was 3.5 years (range, 9 months to 14 years). The mean caregiver health-related quality of life (HRQOL) score was 59.3, the mean family functioning score was 62.8, and the mean total family impact score was 54.7 with relative deficits seen in caregiver's social functioning (56.9) and emotional functioning (53.2). Good or average quality of physical and social function was seen among 74 % and 65 % of caregivers respectively while only 55 % were reported having good or average emotional function. Emotional disturbance, interfering with everyday family activities, and sleep disturbance were the major concerns among caregivers. Conclusion: The biopsychosocial consequences of caring for a child with a tracheostomy are profound for the family, affecting the quality of life of caregivers and adding to the emotional and social burden of the child's family. 

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From villain to hero: trans men and non-binary persons as care providers in Southern Europe

This article focuses on biographical narratives of trans men and non-binary people about care practices in the spheres of friendship and family. Recognising forms of resistance to adversity through informal networks of support, in this article, care provided by trans and non-binary people to (often) cisgender recipients is conceptualised as a heroic act. It is suggested that trans male and non-binary embodied experiences of care constitute a fundamental political platform to rethink sociologically concepts of care, masculinity and corporal dissidence within the framework of intimate citizenship in and beyond Southern Europe.

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Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Background: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. Objectives: To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings. Methods: From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results: Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions: Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot - and perhaps should not - simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. Objectives: This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Psychological well-being and family distress of Italian caregivers during the COVID-19 outbreak

Objecives: The present study aimed to investigate the personal well-being and family distress of Italian caregivers during the lockdown. Methods: Five hundred sixty-five family caregivers and 638 age- and sex-matched noncaregivers completed a web-based survey. The following scales were administered to all participants: General Health Questionnaire-12 items (GHQ-12), Insomnia Severity Index (ISI), Brief Resilient Coping Scale (BRCS), and Family Distress Index (FDI). Caregivers were also asked to provide information about their family members with disabilities. Results: Individual and family distress, as well as insomnia, were significantly higher in caregivers than controls. Contrariwise, caregivers reported lower resilience levels. Multiple linear regression showed that distress was higher in caregivers living in Central and Southern Italy. Individual well-being was negatively predicted by low independence measured by the activities of daily living (ADL). Family distress was higher in households of psychiatric patients. Finally, low resilience levels appeared as the strongest predictors of both individual and family distress. Conclusions: The lockdown caused severe distress among caregivers and families of people with disabilities. Support networks for people with disabilities and their families are fundamental to prevent severe consequences from a psychological, social, and economical point of view.

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Known by the Children’s Condition: Associative Stigma Among Family Carers of Children with Cerebral Palsy

Background: The experience of associative stigma (stigma that persons experience because they are associated with persons who belong to a stigmatized category in society) could have negative impacts on carers’ and children’s health and well-being. This descriptive qualitative study therefore focused on associative stigma among family carers of children with cerebral palsy (CP) in the Greater Accra Region of Ghana. Methods: Using the convenience sampling technique, sixty-one family carers were purposively recruited to participate in the study. Focus group discussions (FGDs) and in-depth interviews (IDIs) were conducted to collect data. With the permission of participants, the FGDs and IDIs were audio-recorded and transcribed. Braun and Clarke’s (2006) thematic analysis was employed to analyze the data. Results: The findings indicated that the carers of children with CP were stigmatized and discriminated against by family and non-family members. Evidence showed that myths and beliefs underpinned people’s negative attitudes toward carers included in the study. Moreover, the family carers utilized different strategies, such as avoidance, discounting, reacting, and accepting, to address associative stigma. Conclusions: Given that carers’ experiences of stigma and discrimination are often overlooked, family counseling and education could be provided to help challenge the negative perceptions and beliefs people have about the condition. This would help improve the well-being of carers, particularly mothers of children with cerebral palsy. 

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Stroke Rehabilitation Use and Caregiver Psychosocial Health Profiles in Singapore: A Latent Profile Transition Analysis

Objectives: To identify and describe caregiver profiles based on their psychosocial health characteristics over a 12-month period and transitions among these profiles, to determine if stroke rehabilitation use at 12 months post-stroke differed by caregiver profile transition patterns, and to investigate if caregiver profiles at 3 months post-stroke moderate the association of stroke rehabilitation use at 3 months and 12 months post-stroke after accounting for covariates. Methods: Latent profile transition analysis of caregiver psychosocial health with stroke rehabilitation use at 12 month post-stroke as outcome. Setting and Participants: A total of 149 stroke patient-caregiver dyads from the Singapore Stroke Study. Methods: Cross-sectional latent profile analyses were conducted on caregiver psychosocial health indicators of burden, depression, health status, quality of relationship with patient, and social support. Changes in latent profile classification over 3 time points (baseline, 3 months, and 12 months post-stroke) were analyzed using latent transition analysis. A transition model with stroke rehabilitation use at 12 months post-stroke as the outcome was tested after accounting for covariates. Results: Two distinct caregiver psychosocial health latent profiles were found across time: nondistressed and distressed. Most caregivers were classified as nondistressed and remained nondistressed over time. Distressed caregivers at baseline were 76% likely to become nondistressed at 12 month post-stroke. Regardless of profile transition patterns, nondistressed caregivers at 12 months post-stroke tended to have cared for stroke rehabilitation nonusers at 12 months post-stroke. Patient depression explained profile classification at 3 months and 12 months post-stroke. After accounting for covariates, rehabilitation users at 3 months post-stroke tended to continue using rehabilitation at 12 months post-stroke only when they had nondistressed caregivers at 3 months post-stroke. Conclusions and Implications: Whether caregiver adaptation explains the associations between the latent profile transition patterns and rehabilitation use at 12 months post-stroke should be examined. Early psychosocial health assessment and sustained support should be made available to stroke caregivers to enhance their well-being and subsequent patient rehabilitation participation. 

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Factor analysis of the Resilience Scale for Brazilian caregivers of people with Alzheimer's disease

Background: Resilience is a dynamic process that acts to modify the effects of an adverse life event. Objectives: In this study, we aimed to test the construct validity of the Resilience Scale by employing exploratory and confirmatory procedures, and to investigate the relationship between caregiver's resilience and clinical status of people with Alzheimer's disease. Methods: A sample of 143 dyads of people with Alzheimer's disease and their primary caregivers were included. Results: The total Resilience Scale mean score was 140.3 (standard deviation [SD] = 16.289), ranging from 25 to 175, indicating a high level of resilience. Cronbach's alpha was high (alpha = 0.77), indicating excellent internal consistency. The mean of corrected item-total correlation coefficients was moderate. The Resilience Scale presented a four-factor solution with a well-defined structure: sense of life and self-sufficiency, perseverance, self-confidence and equanimity, and meaningfulness. Conclusion: The findings indicate excellent internal consistency of the Resilience Scale when used to evaluate psychological and emotional difficulties of caregivers, even though the correlations observed between the Resilience Scale and clinical variables were not significant for functionality, mood, awareness, neuropsychiatric symptoms, or burden.

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Exploring The Experiences Of Stroke Survivors, Informal Caregivers And Healthcare Providers In Sierra Leone: A Qualitative Study Protocol

Background: Stroke is now the second leading cause of adult death in Sub-Saharan Africa. Developed in dialogue with stroke survivors and caregivers in Sierra Leone, this will be the first study to explore the experience of stroke as well as the perceptions of the barriers and facilitators to accessing stroke care among stroke survivors, informal caregivers and healthcare providers. Findings will inform future stroke research and care in Sierra Leone. Methods and analysis: A cross-sectional qualitative study employing semistructured interviews that will be audiorecorded, translated, transcribed and coded. Setting: Freetown, Sierra Leone. Participants: Interviews with a purposive sample of stroke survivors, informal caregivers and healthcare providers. Analysis: Interviews will be coded by two authors and inductively analysed using thematic analysis. Ethics and dissemination: This study has received ethical approval from the Sierra Leone Ethics and Scientific Review Committee (8 December 2020) and the KCL Biomedical & Health Sciences, Dentistry, Medicine and Natural & Mathematical Sciences Research Ethics Subcommittee (reference: HR-20/21-21050). The findings of the study and learning in terms of the process of coproduction and involvement of stroke survivors will be disseminated via peer-reviewed publications, conferences, media and lay reports.

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Supporting Informal Caregivers of People With Dementia in Cost-Effective Ways: A Systematic Review and Meta-Analysis

Background and Objectives: Caring for persons with dementia is a heavy burden for informal caregivers. This study aimed to appraise the economic evidence of interventions supporting informal caregivers of people with dementia. Methods: Literature was searched, and trial-based studies evaluating the costs and effects of interventions supporting informal caregivers of people with dementia were included. Cost data were analyzed from both healthcare and societal perspectives. Random-effects models were used to synthesize cost and effect data, based on mean differences (MDs) or standardized MDs. Results: Of 33 eligible studies identified from 48 588 records, 14 (42.4%) showed net savings in total cost regardless of analytical perspectives. Among 22 studies included in meta-analyses, caregiver-focused psychosocial interventions showed improvements in caregivers’ psychological health (n = 4; standardized MD 0.240; 95% confidence interval 0.094-0.387); nevertheless, the increases in societal cost were significant (n = 5; MD 3144; 95% confidence interval 922-5366). Psychological intervention and behavioral management engaging patient-caregiver dyads showed positive effects on caregivers’ subjective burden, also with increases in total cost. Subgroup analyses indicated that the inclusion of different intervention components, the caregiver characteristics, and the follow-up periods could affect the costs and effects of interventions supporting informal caregivers. Conclusions: Psychosocial interventions directed at informal caregivers and dyad-based psychological and behavioral interventions are effective but also expensive. The use of these interventions depends on the society's willingness to pay. More comprehensive economic evidence of interventions supporting informal caregivers is required, and the design of intervention should focus more on different intervention components, characteristics of patients and caregivers, and healthcare systems. 

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Subjective burdens among informal caregivers of critically ill patients: a cross-sectional study in rural Shandong, China

Background: Informal caregivers are the main source of care for the critically ill, especially after discharge or during the terminal stages at home. However, the concern for informal caregivers is often overshadowed by critically ill patients. Objectives: The purpose of this study is to determine the influencing factors of the subjective burden of informal caregivers and to seek solutions accordingly. Methods: Between July and August 2019, a cross-sectional study was conducted in Shandong, China, focusing on family caregivers and critically ill patients. Subjective caregiver burden was measured by the Chinese version of Zarit Burden Interview (ZBI). The stress process model was used to identify conditions relevant to the caregiving burden and to assess their impact on family caregivers. Results: 554 samples were selected for analysis. The average scores of Zarit Caregiver Burden Interview (ZBI) scores in this study was 30.37±19.04 (n=554). ZBI scores of older, less educated, and spouse caregivers were significantly lower (4.12; 95%CI, 0.42 to 7.81; P =0.029). Objective and subjective burdens increased proportionally. Secondary role stress factors included the higher out-of-pocket (OOP) costs of critical diseases and lower household income, both of which increased caregivers’ subjective burdens (1.28; 95%CI, -0.06 to 2.63; p=0.062). Formal medical aid systems played a positive role in reducing subjective caregiving burdens (-7.31; 95%CI, -13.23 to -1.40; p=0.016). Conclusions: Health policies should address both the direct medical burdens and the intangible psychological burdens of critical diseases. 

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Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs.  Objectives: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi‐structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. 

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Family caregivers of people with dementia have poor sleep quality: A nationwide population-based study

Background: Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. Methods: We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitat-ing caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Results: Both cohabitating and non-cohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15–1.38) and noncohabitating caregivers (OR 1.15, CI 1.10–1.21) were significantly associated with poor sleep quality. Conclusions: Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers. 

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The Association of Positive or Negative Religious Coping Methods With Psychological Distress and Quality of Life Among Parents of Infants With Congenital Heart Disease

Objective: The purpose of this study was to evaluate whether positive and negative religious coping methods were associated with psychological distress and quality of life in parents of infants with congenital heart disease (CHD). Methods: This descriptive, cross-sectional study was conducted at a provincial hospital in Fujian, China. Clinical data from 115 parents of infants with CHD were collected. Chinese Sociodemographic Forms, Brief RCOPE, Beck Depression Interview (BDI), and the Short Form Health Survey (SF-36) were used in this study. Results: The sex of caregivers in infants with CHD was an independent predictor of BDI scores. The positive religious coping score and the negative religious coping score were both independent predictors of the BDI score (beta = -5.365, P = 0.006 and beta = 4.812, p = 0.017). The correlation between the quality-of-life scores and positive or negative religious coping scores indicated that positive religious coping scores were significantly positively correlated with Vitality, Social Functioning, and Mental Health scores. There was a significant negative correlation between negative religious coping scores and mental health scores. Conclusions: Positive or negative religious coping methods may be associated with psychological distress and quality of life among parents of infants with CHD. It is suggested that more attention should be devoted to the influence of religious coping methods on parents of infants with CHD, and the use of religious resources should be encouraged.

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Perceptions and experiences of dementia and its care in rural Kenya

Objectives: We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya. Methods: A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data. Findings: Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse. Conclusions: We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally. 

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Prevalence of perceived stigma and associated factors among primary caregivers of children and adolescents with mental illness, Addis Ababa, Ethiopia: Cross-sectional study

Background: Mental illness exposes persons to stigma and this stigma also affects family caregivers of persons with mental illness. The objective of the study was to assess the prevalence of perceived stigma and associated factors among primary caregivers of children and adolescents with mental illness, Addis Ababa, Ethiopia. Methods: A cross-sectional study design and systematic random sampling technique were used to recruit 408 participants at St. Paul’s Hospital Millennium Medical College and Yekatit-12 Hospital Medical College, Addis Ababa, Ethiopia. We collected the data by face-to-face interview. Devaluation of Consumer Families Scale was used to measure perceived stigma. Patient Health Questionnaire-9 and Oslo-3 social support scale were the instruments used to assess the factors. Coded variables were entered into Epidata V.3.1 and exported to SPSS V.21 for analysis. Binary logistic regression was used for analysis. Result: A total of 408 participants were interviewed, with a response rate of 96.5%. The magnitude of perceived stigma was 38.5% with 95% CI (33.6-43.1). Majority (68.6%) of the respondents were female. In the multivariate logistic regression, being mother (AOR = 2.8, 95% CI: 1.59, 4.91), absence of other caregiver (AOR = 2.0, 95% CI: 1.15, 3.49), poor social support (AOR = 3.9, 95% CI: 1.59, 6.13), and symptoms of depression (AOR = 2.9, 95% CI: 1.88, 3.65) were factors significantly associated with perceived stigma. Conclusion: The prevalence of perceived stigma among primary caregivers of children and adolescents with mental illness was high. Being mother, absence of other caregiver, poor social support, and symptoms of depression were factors significantly associated with perceived stigma.

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Resilience, emotional intelligence, and occupational performance in family members who are the caretakers of patients with dementia in spain: A cross-sectional, analytical, and descriptive study

Background: The concern in the scientific community for the study of people with dementia and their families is comprehensible, especially the importance of knowing the effects that caring for the patient has on their family dynamic, paying special attention to the main caregiver. Objectives: The objective of this study was to analyze the relationship of resilience and emotional intelligence with functional performance in the main caregivers of people with dementia in Spain according to the phase of the disease. Methods: A cross-sectional, descriptive, and analytical study was carried out. A total of 144 primary family caregivers of patients with dementia in Spain were included in the study. The following variables were measured: sociodemographic, psychosocial, and occupational, as well as resilience and emotional intelligence. Results: The caregivers obtained a low moderate resilience (mean = 64.01 ± 14.5), an emotional intelligence bordering between moderate and high (mean = 78.48 ± 14.82), and a 61.8% self-care categorized as somewhat and quite a bit. The presence of higher levels of resilience in family caregivers of people with dementia were positively related to the time spent on self-care (r = 0.227; p = 0.033) and leisure (r = 0.262; p = 0.014), especially in the moderate phase of the disease, while in the severe phase, this relationship appeared with productivity (r = 0.355; p = 0.034). The higher levels of emotional intelligence were positively related to a greater time dedicated to self-care (r = 0.233, p = 0.005), as well as the data observed in the moderate and severe phase (r = 0.214; p = 0.046 and r = 0.398; p = 0.016 respectively). Conclusions: The primary caregivers of relatives with dementia who have higher levels of resilience and emotional intelligence spend more time on self-care and leisure activities, especially in the moderate phase of the disease. 

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The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme

Background and Objectives: We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to 'living well'. Methods: We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Results: Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Conclusions: Initiatives that increase support or engagement in the community or wider society may help to increase carerss' perceptions of their social status, enhancing their ability to 'live well'.

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Effects of a social support family caregiver training program on changing blood pressure and lipid levels among elderly at risk of hypertension in a northern Thai community

Background: Hypertension is becoming increasingly prevalent among the elderly. Family caregivers play an important role in caring for elderly people and empowering them to care for themselves. Objectives: This study’s goal was to see how social support training for family caregivers affected changes in hypertension, total cholesterol, and high-density lipoprotein (HDL), and how such support led to the prevention of hypertension behaviors among the elderly in rural areas. Methods: This was a quasi-experimental study with 268 elderly people at risk of hypertension and their caregivers. Sixty seven pairs of elderly people and their caregivers were assigned to the intervention and control groups. Baseline data were collected in November 2020. The intervention group received the Social Support Family Caregiver Training Program (SSFCTP), while the control group received a regular program from the local health authority. The activity lasted 12 weeks, with home visits and telephone check-ups along the way, and data collection took place after the program ended. The final data were collected three months after the end of the intervention. Results: An analysis of repeated measures ANOVA showed the overall effect of the SSFCTP on knowledge, self-efficacy, health care behaviors, and blood pressure among elderly people during three different time periods (p<0.05). Furthermore, the intervention program had a time-dependent effect on knowledge, blood pressure, and total cholesterol levels (p<0.05). In terms of caregiver outcomes, there was an overall difference among the degrees of knowledge, self-efficacy, and behaviors toward health care displayed by elderly hypertensive patients during the three different time periods (p<0.05). The average knowledge and self-efficacy of the participants improved after the intervention. As a result, better self-care behaviors and lower blood pressure and total cholesterol levels were observed among the elderly participants after the intervention. Conclusions: The programs emphasized the importance of caregivers’ roles in providing social support, boosting confidence, and encouraging participation in caring, monitoring, and assisting the elderly in controlling blood pressure and other health issues.

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Evaluation of Family Caregivers’ Use of Their Adult Care Recipient’s Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis

Background: Patient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults. Objective: This study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers’ use of their care recipient’s patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers’ use of their own portal. Methods: We conducted a secondary analysis of cross-sectional data from the National Cancer Institute’s Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers’ use of their care recipient’s and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics. Results: Over half of the caregivers (179/320, 55.9%) reported using their own portal at least once, whereas only one-third (105/320, 32.8%) reported using their care recipient’s record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient’s portal (odds ratio 11.18; P<.001). Conclusions: Policies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient’s portal.

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Dyadic Research of Patients and Their Family Caregivers in the Context of Chronic Illness: Current Status and Challenges

Objectives: This narrative review aims to provide an introduction and overview of dyadic research within the context of chronic illness. In addition, some methodological considerations and future directions for conducting dyadic research are presented. Methods: The focus of this review is on adult participants in dyads and with chronic illness based on the previous studies and literatures on dyadic science. Results: Theory of Dyadic Illness Management and Dyadic Regulation-Connectivity Model (DR-CM) may be appropriate for performing dyadic research. At present, there is a lack of qualitative and quantitative knowledge on the dyadic approach for research on chronic diseases. Dyadic health interventions for building collaborative relationships within a dyad may be beneficial to improve dyadic health outcomes. This article addressed some of the challenges regarding recruitment, data collection, and analysis when it comes to planning dyadic research pertaining to chronic illnesses. Conclusion: Healthcare professionals should prioritize needs and preferences at the dyadic level when designing effective chronic disease management. Particularly, it is critical to regularly monitor the dyadic relationships or type of dyadic care during illness trajectories. More research should be undertaken on patient-family caregiver dyads in chronic care, considering the various types of chronic diseases and cultural diversities. 

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Dual-duty caregivers: formal and informal care roles and their implications among nursing workers

Background: A nursing worker who is also a caregiver of an elderly family member, plays a dual-duty role, which is challenging and requires knowledge, skills and professional experience. The interaction between family and work entails a spillover between the two, and affects employees and healthcare organizations. Objectives: The current exploration study examined differences between nursing employees who hold a dual role and those who do not, while identifying implications of the dual-duty role and the correlations between them at the individual level that might negatively affect the organization. Methods: A cross-sectional quantitative study was conducted, including 158 staff members from nursing homes in Israel: 41.8% were also informal caregivers for elderly family members, 62.5% were women, and 79.2% were Arabs. A self-administered questionnaire was used to measure workload, family-work conflict, absenteeism, tardiness, and intentions to leave the organization. Participants with a dual role tended to be older, had more children, had worked for longer period, and held part-time positions compared to those who do not. Results: Preliminary results showed no significant differences between the two groups. Pearson correlations revealed that workload and family-work conflict were positively associated with leaving intentions (dual-role caregivers: r=.30, p<.05, r=.45, p<.01; others: r=.61, p<.01, r=.34, p<.05). Among the dual-role group, workload was related to absenteeism (r=.27, p<.05), and family-work conflict was related to absenteeism and tardiness (r=.24, r=.29, p<.05). Among the other group, only family-work conflict was associated with tardiness (r=.33, p< .01). Conclusions: As negative consequences were indicated for workers with a dual-duty role, additional research in the healthcare sector should be conducted, leading to intervention programs for helping employees and organizations deal with the dual role and serving as the basis of policies and procedures. Key messages Nursing workers often suffer from workload and family-work conflict. Workload and family-work conflict among dual-duty caregivers might result in withdrawal behaviors (tardiness and absenteeism).

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Does Unpaid Caregiving Erode Working Hours Among Middle-Aged Chinese Adults?

Background: Middle-aged adults are commonly confronted with the burden of paid work and multiple caregiving roles. Objectives: This paper examines the relationship between weekly hours of unpaid caregiving and hours of work using data from the baseline survey of the China Health and Retirement Longitudinal Study. Methods: The analysis was conducted on a nationally representative sample of 3645 working-age Chinese adults aged 45–60 years who were not farming and had a young grandchild and/or a parent/parent-in-law. For women and men separately, we combined the use of a Heckman selection procedure and instrumental variables to estimate the relationship between weekly caregiving hours and hours of work. A caregiving threshold was also identified for women and men separately to allow for the testing of a kink and/or a discontinuity in this relationship. Results: We found that for women, their working hours were initially unrelated to hours of caregiving before the threshold of 72 caregiving hours per week; then, their working hours experienced an almost two-fold increase at the caregiving threshold before falling by 2.02 percent for each additional hour of caregiving beyond the threshold. For men, their hours of work fell by 2.74 percent for each hourly increment in caregiving. Although a caregiving threshold of 112 h was identified for men, there was insufficient evidence for a statistically significant kink or discontinuity in this relationship. Conclusions: These findings provide support for a range of fiscal and human resource policies that target employed family caregivers in order to advance their well-being while also maintaining their work productivity.

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Determinants of the need for respite according to the characteristics of informal carers of elderly people at home: results from the 2015 French national survey

Background: The demographic and social changes associated with population aging and the increasing incidence of chronic diseases underscore the importance of the role of informal carers. The number of informal carers is increasing and negative consequences associated with providing care, such as burnout, are known. However the influence of socioeconomic and psychological factors on the need for respite have not been well characterized to date. Informal care represents an essential component of health care systems and long-term care. Objectives: The purpose of this study was to shed light on how the characteristics of informal carers affect the need for respite. Methods: We used data from a nationally representative survey, Capacités Aides et Resources des Seniors (CARE - ménage), collected in 2015 by the National Institute for Statistics and Economic Studies (INSEE) and the Directorate for Research, Studies, Assessment and Statistics (DREES). The determinants of the need for respite among the characteristics of informal caregivers were explored using a probit model. To handle missing data, sensitivity analyses were performed using multiple imputations. Results: Our study included N = 4033 dyads of informal carers and care recipients. The mean age was 61 for carers. The majority of carers were female, married, the child of the care recipient. Almost 27% reported a need for respite. A worse health status, feeling of loneliness, having a lack of time for oneself and needing to provide more than 30 h of care per month very significantly increased the need for respite irrespective of whether or not the carer lived with the care recipient (p < 0.01). Providing care to other persons was likely to induce a greater need for respite (p < 0.01). Cohabitation of the informal carer and the care recipient was likely to increase the need for respite (p < 0.05). Conversely, however, being closely acquainted with the care recipient showed a reduced need for respite in comparison with that of carers who are married to their care recipient (p < 0.05). Conclusions: These findings provide useful information for policymakers, physicians and other health professionals for reducing carers’ risk of exhaustion and burnout and for referring carers to the relevant service, e.g. psychological intervention, respite care support, training support and education support. 

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Determinants of informal care‐giving in various social relationships in the Netherlands

Objectives: This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. Methods: We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). Results: One‐third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care‐giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second‐degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non‐kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non‐kin is also correlated with beliefs. Conclusions: If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.

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Dementia caregiving in the Middle East and North Africa: A scoping review

Background: Care for persons with dementia in the Middle East and North Africa (MENA) is undertaken predominantly by family members, domestic workers, and private nurses within the home. Domestic caregivers possess different understandings and varying degrees of knowledge of dementia that are influenced by complex socio-cultural and religious factors. With much of the burden falling on the shoulders of “invisible” caregivers, the role and needs of these individuals require deeper scrutiny. Objective: The purpose of this scoping review was to examine the empirical studies published on caring for persons with dementia in Arab countries of the MENA region. Methods: Using a systematic review technique, searches were conducted on PubMed, Embase, Web of Science, Scopus, and Google Scholar using database-specific terms associated with caregiving, dementia, aging, and the MENA region. To ensure local and regional research was captured, hand searches of regional journals, reference lists of included articles, and Arabic databases Al-Manhal and e-Marefa were also searched. No date restrictions were imposed. Results: Twenty studies met inclusion criteria and the following themes were identified: caregiving experiences and the burden of care; barriers to caregiving; and caregiver recommendations to improve care. Results demonstrate that studies about informal caregivers and dementia within Arab-Muslim populations are underrepresented in the research. Conclusions: This review highlights the paucity of literature on service users’ experiences and underscores the need for future research specific to dementia care within the Arab-Islamic sociocultural context. These trajectories are especially pertinent given the unprecedented aging demographics of the MENA populations. 

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Culturally adapted psychoeducation among family caregivers of schizophrenic clients: A scoping review

Background: As psychoeducation was originally developed from Western, this intervention should be integrated with a culture to obtain effective outcomes. However, how culturally adapted psychoeducation on family caregivers of schizophrenic client developed in the previous studies has not been systematically documented. Objective: The purpose of this review was to map culturally adapted psychoeducation in the previous studies. Methods: This scoping review followed Arksey and O’Malley approach. Inclusion criteria including family caregiver, culture, psychoeducation, and schizophrenia. Non-primary and non-experiment studies, non-English language, and non-free articles were excluded from the study. Advanced search technique used keywords family caregiver, culture, psychoeducation, schizophrenia on CINAHL, PubMed, and PsycInfo databases. Screening was done by checking duplication, title, and abstract. Full text of relevant articles was read in detail to select eligible articles. Selection results were described in the PRISMA flowchart. Data were analyzed after these were extracted and resumed on the table. Results: A total of eight studies were included in this review. More than half of articles used randomized control trial but these studies did not conduct follow-up. Most of studies were in Asia (6) and it conducted in the outpatient department (6). Almost all studies modified multifamily group psychoeducation with culture theories. The longest duration of intervention was 12 months. Multidiscipline health professional delivered the intervention and most of them were psychiatrist. Coping was the most family caregiver outcomes in reviewed studies. Conclusion: Limited studies were obtained in various ethnics and ways. Further studies need to measure effectiveness of the intervention in long-term effect. 

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The burden of Alzheimer’s caregivers and social support in the Tunisian family

Background: Alzheimer is a pathology that concers the patient and his family having a physical, social, economic and psychological impact. Research on family caregivers is still lacking and little is known about caregivers burden and ist associated factors in Tunisia. Objectives: The aim of this study were to describe caregiver burden among Tunisian family caregivers of patients with alzheimeŕs disease, its associated factors and ist relationship to social support. Methods: We conducted a cross-sectional study among 118 family caregivers during three months at the neurology outpatient departments of two university hospitals. Sahloul, Sousse and Taher Sfar, Mahdia. Using the Zarit Burden Interview-22 (ZBI)items and the Medical Outcome Study-Social Support Survey to assess burden and social support among the caregivers. Results: We included 118 caregivers of patients with Alzheimeŕs disease,with an average age of 45±15 years. Women were more predominant with a sex ratio of 0.57.Half of caregivers were the descent of patients. The Mean years of caregiving was 5±3 years with an average of 13 hours ±3 of care assistance per day. The mean ZBI Score was 38.4±18.5 and 16.1% of caregivers percived a severe burden. The mean ZBI Score was higher in female, retired, lowmsocio economic status and in rural area with a statistically significance difference. We found that caregiver burden and social support were highly correlated (p < 0.001,r=-0.41)indicating that a high level of caregiver burden was asoociated with a less level of social support. Conclusions: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. A considerate help and support from helth care and social institutions is required by taking into account the factors that contribute to caregivers burden and considering the importance of social support in alleviating caregiver burden. Key messages: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. High level of caregiver burden was asoociated with a less level of social support.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden. 

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Codesigning a supportive online resource for Australian cancer carers: A thematic analysis of informal carers' and healthcare professionals' perspectives about carers' responsibilities and content needs

Objective: To gather preliminary qualitative data that will assist in the codesign and development of a new informational and supportive website to assist informal cancer carers in Australia. Methods: Utilising a previously tested codesign process, informal carers' experiences and perspectives, including those of healthcare professionals', were examined via focus groups and/or interviews. Data were analysed via thematic analysis. Participants Rural (n=9) and urban (n=11) carers', and healthcare professionals' (n=8) perspectives were collected. Carers participated in a focus group (n=9) or telephone interview (n=11). Healthcare professionals completed an interview (n=6) or online survey (n=2). Results: Rural and urban carers typically felt ill prepared for their multitudinal caregiving responsibilities. Supporting patient-to-healthcare professional liaisons could especially challenge. Carers' biopsychosocial and fiscal strains were affected by patients' hardships and available informal supports. Rural carers described greater social support than urban carers. Both rural and urban carers also described discontentment related to a carer neglecting healthcare system. Both carers and healthcare professionals endorsed the need for a user-friendly, carer-specific website encompassing practical information and resources, peer-driven advice and evidence-based illness information, tailored to the Australian context. Conclusions: Carers and healthcare professionals recognise the pressing need for an Australian, cancer carer-specific online resource. Findings will inform the next phase, where a resource will be designed, developed and tested. 

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Characteristics of dyadic care types among patients living with multiple chronic conditions and their informal caregivers

Objectives: To examine the distribution of dyadic care types in multiple chronic conditions, compare self-care and caregiver contributions to patients' self-care in each care type and identify the patient and caregiver characteristics associated with each care type. Methods: Secondary analysis of a multicentre, cross-sectional study. Patient-caregiver dyads were enrolled from outpatient clinics and community settings. The Dyadic Symptom Management Type Scale was used to categorize dyads by type. Self-care, self-efficacy, comorbidities and cognitive impairment were measured in patients, whereas caregiver contributions to patient self-care, self-efficacy, caregiver burden and hours of caregiving were measured in caregivers. Sociodemographic characteristics perceived social support and mutuality were measured in both patients and caregivers. Univariate and multivariate analyses were performed. Results: A sample of 541 patient-caregiver dyads was examined. The most frequent dyadic care type was the collaborative-oriented (63%). In the patient-oriented type, patients scored higher on self-care compared with caregivers; in the caregiver-oriented and collaborative types, caregivers scored higher than patients supporting the typology. The patient-oriented type was associated with younger, healthier male patients with better cognitive status, who scored higher for mutuality and whose caregivers scored lower for burden. The caregiver-oriented type was associated with older, less educated patients, with caregivers experiencing higher burden and unemployment. The collaborative type was associated with sicker patients, with the caregiver more probably to be female and employed, with higher perceived social support, mutuality and burden. The incongruent dyadic care type was associated with lower caregiver mutuality. Conclusions: In the context of multiple chronic conditions, clinicians should consider targeting any educational interventions aimed at improving patient self-care and caregiver contributions to self-care by dyadic care types. 

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Ethnic differences in informal caregiving after stroke

Background: Informal (unpaid) caregiving usually provided by family is important poststroke. We studied whether the prevalence of informal caregiving after stroke differs between Mexican Americans (MAs) and non-Hispanic Whites (NHWs). Methods: Between October 2014 and December 2018, participants in the BASIC (Brain Attack Surveillance in Corpus Christi) project in Nueces County, Texas, were interviewed 90 days after stroke to determine which activities of daily living they required help with and whether family provided informal caregiving. Ethnic differences between MAs and NHWs were determined by logistic regression. The logistic models were stratified by formal (paid) care status. Odds ratios (95% CIs) are reported with NHW as the referent group. Fisher exact tests were used to assess the association of ethnicity with relationship of caregiver and with individual activities of daily living. Results: Eight hundred thirty-one patients answered the caregiving questions. Of these, 242 (29%) received family caregiving (33% of MAs and 23% of NHWs), and 142 (17%) received paid caregiving (21% of MAs and 10% of NHWs). There were no ethnic differences in stroke severity. In logistic regression analyses, among those without formal, paid care, MAs were more likely to have informal caregiving (odds ratio, 1.75 [95% CI, 1.12–2.73]) adjusted for age, National Institutes of Health Stroke Scale, prestroke modified Rankin Scale, and insurance. No ethnic differences in informal care were found among those who had formal care. There were no differences between ethnic groups in which family members provided the informal care. MAs were more likely to require help compared with NHWs for walking (P<0.0001), bathing (P<0.0001), hygiene (P=0.0012), eating (P=0.0004), dressing (P<0.0001), ambulating (P=0.0304), and toileting (P=0.0003). Conclusions: MAs required more help poststroke than NHWs for assistance with activities of daily living. MAs received more help for activities of daily living through informal, unpaid caregiving than NHWs if they were not also receiving formal, paid care. Efforts to help minority and low-resource populations provide stroke care are needed. 

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Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Methods: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.

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Humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia

Background: Chronic obstructive pulmonary disease (COPD) is associated with substantial humanistic and socioeconomic burden on patients and their caregivers. COPD is expected to be 7th leading cause of disease burden till 2030. Objectives: The objective of the current study was to assess the humanistic and socioeconomic burden of COPD patients and their caregivers in Malaysia. The burden includes the cost of management of COPD, QOL of COPD patients and their caregivers, work productivity and activity impairment of COPD patients and their caregivers due to COPD. Methods: One hundred and fifty COPD patients and their caregivers from the chest clinic of Penang Hospital were included in the study from August 2018 to August 2019. Caregiving cost was estimated using the replacement cost approach, while humanistic and social burden was assessed with the help of health status questionnaires. Results: Overall, 64.66% and 7.1% of COPD patients reported to depend on informal caregivers and professional caregivers respectively. COPD patients reported dyspnoea score as 2.31 (1.31), EQ-5D-5L utility index 0.57 (0.23), CCI 2.3 (1.4), SGRQ-C 49.23 (18.61), productivity loss 31.87% and activity impairment 17.42%. Caregivers reported dyspnoea score as 0.72 (0.14), EQ-5D-5L utility index 0.57 (0.23), productivity loss 7.19% and social activity limitation as 21.63% due to taking care of COPD patients. Conclusions: In addition to the huge direct cost of management, COPD is also associated with substantial burden on society in terms of compromised quality of life, reduced efficiency at the workplace, activity impairment and caregiver burden. 

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Challenges to Family Caregivers in Caring for Gastric Cancer Patients from Perspectives of Family Caregivers, Patients, and Healthcare Providers: A Qualitative Study

Objectives: Cancer affects both patients and their families. Sometimes, the effects of cancer on families are greater than its effects on patients. Family caregivers play significant roles in care for patients with cancer. Nonetheless, the data on the challenges they face in caregiving are limited. The present study explored the perspectives of patients with gastric cancer (GC), their family caregivers, and healthcare providers regarding family caregivers' challenges in caregiving to patients with GC. Methods: This descriptive exploratory qualitative study was conducted in 2019-2020. Six GC patients, six family caregivers, three physicians, and five nurses took part for a total of twenty participants. Purposive sampling was performed, and data were collected through semi-structured interviews and continued up to data saturation. Conventional content analysis was used for data analysis. Results: Caregivers' challenges in caregiving to patients with GC were grouped into five main categories, namely, lengthy process of GC diagnosis, delivery of bad news, management of physical symptoms, altered relationships, and psychological consequences, and 14 subcategories. Conclusion: Educating the public about the primary symptoms of GC and the importance of timely seeking medical care as well as using culturally appropriate protocols for delivering bad news is recommended. Empowering family caregivers for the effective management of GC symptoms and caregiving-related challenges are also recommended to reduce their caregiver burden. 

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Caring for persons with drug use disorders in the Yangon Region, Myanmar: Socioeconomic and psychological burden, coping strategies and barriers to coping

Background: Drug use disorder (DUD) is a serious health condition that imposes a heavy burden on the persons who have a drug addiction experience and their families, especially in countries, such as Myanmar, where few formal support mechanisms are in place and repressive drug laws exacerbate the situation. Yet, in Myanmar, little is known about how informal caregivers are affected. Objectives: This qualitative study aims at exploring the socioeconomic and psychological burden that informal caregivers in Myanmar encounter, coping strategies they employ, as well as barriers to coping they face. Methods: Thirty primary informal caregivers were chosen purposively from a mental health hospital in Yangon for in-depth interviews. The recorded interviews were transcribed and the data were analysed using framework analysis. Findings: The results revealed that financial constraint, income loss, social limitation and negative impact on family cohesion are important dimensions of socioeconomic burden, whereas sadness, anger, helplessness, worry, fear and guilt are the main psychological distress factors encountered by caregivers of persons with DUD. Key coping strategies employed by caregivers include religious coping, financial coping, acceptance and planning. Moreover, perceived stigma towards persons with DUD and their caregivers was very high and caregivers received hardly any social support, inter alia because of the country's drug law which reinforces stigma and discrimination. Neither the government nor any other organization in Myanmar provided financial support to the caregivers. Conclusions: The results of this study showed that caring for persons with DUD has devastating effects on caregivers and their families. While the 2018 National Drug Control Policy can potentially help alleviate the burden on substance users and their families, further amendments of the existing drug law are urgently needed. Moreover, strengthening prevention and harm reduction approaches, improving treatment and rehabilitation services, as well as stigma-reducing educational campaigns should be considered a priority. 

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Caregiving Role and Psychosocial and Individual Factors: A Systematic Review

Background: Taking care of a person with a physical disability can become a challenge for caregivers as they must combine the task of caring with their personal and daily needs. Objectives: The aim of this study was to assess the impact that taking care of a person who needs support has on caregivers and to analyze certain characteristics they present, such as self-esteem and resilience. Methods: To that end, a bibliographic review was carried out from 1985, when the first article of taking care of a person who needs support was published, to 2020 (inclusive), in the databases of Web of Science (WoS), Scopus, Pubmed, Eric, Psycinfo, and Embase. Results: The search yielded a total of (n = 37) articles subject to review, following the guidelines established in the PRISMA declaration. Conclusions: The results show that caregiving was highly overburdening and negatively affected the physical condition and the psychological and mental states of caregivers. In addition, certain psychological characteristics present in caregivers such as having high self-esteem and being resilient were found to act as protective factors against the caregiving burden.

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Caregiving Across Cultures: Priority Areas for Research, Policy, and Practice to Support Family Caregivers of Older Asian Immigrants

Background: About 4.6 million older adults (aged 60 years and older) in the United States are foreign born, and Asian Americans are projected to become the largest immigrant group in the United States by 2055. Older Asian immigrants have to navigate new sociocultural contexts, including relationships with health care providers, dietary recommendations and adjustments, and care-seeking norms. They may also experience structural challenges, such as discrimination in the health care system because of race, ancestry, and language. These adults often require assistance from unpaid family caregivers (e.g., adult children)-with whom they are also likely to reside-to navigate these sociocultural complexities and barriers in the health care system. Yet, our understanding of the experiences and challenges of family caregivers of older Asian immigrants remains limited despite their unique circumstances as children of immigrants who are simultaneously balancing and navigating multiple cultural identities of their own while often being viewed as perpetual foreigners or outsiders to US culture. Immigration history and experiences likely also influence the use of formal services. Minority family caregivers are less likely than White caregivers to use formal support services (e.g., mental health treatment), suggesting that they may face additional burdens and barriers in the process of supporting their older relative in the health care system. Identifying ways to better support family caregivers as they care for their immigrant older relatives is critical for promoting inclusion in the health care system. This requires concerted research on Asian American caregivers and their experiences and challenges in their role supporting older relatives with household, daily functioning, and health care activities as well as navigating sociocultural aspects of care. It also requires recognition and consideration of the diversity of experiences and challenges faced by Asian American families, including heterogenous Asian ethnic subgroups with distinct cultures, languages, needs, and preferences.

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Caregiver Burden in Caregivers of Acute Stroke Patients: From a Biopsychosocial Perspective in a Turkey Sample

Objective: This study aimed to evaluate caregiver burden among caregivers of acute stroke patients with a biopsychosocial perspective in a Turkey sample. Methods: 72 stroke patients and 72 their caregivers were included the study. The mean age of the stroke patients included in the study was 65 +/- 12.39. The mean age of caregivers was 44.5 +/- 14 and 66.7% of them were females. Modified Motor Assessment Scale (MMAS), Standardized Mini Mental State Examination (SMMSE) and The Barthel Index (BI) were used to assess the patients with stroke. The caregivers were evaluated by using the Bakas Caregiving Outcomes Scale, Family Sense of Coherence Scale-Short Form (FSOC-S), Hospital Anxiety and Depression Scale (HADS), WHOQOL-Bref-Short Form and Multidimensional Scale of Perceived Social Support (MSPSS). Results: There were significant positive correlation between the BCOS score and the SMMSE (r=0.36; p=0.002) and BI (r=0.22; p=0.05) scores. A significant positive correlation was found between the BCOS score and MSPSS's family (r=0.31; p=0.007), friend (r=0.41; p<0.01) and special human (r=0.46; p<0.01) sub-parameters. In addition, there were significant positive correlations between BCOS score and the physical (r=0.35; p=0.02) and environmental (r=0.42; p<0.01) sub-dimensions of the WHOQOL-BREF, also HADS Depression sub-score (r=0.93; p=0.01). Correlations between BCOS score and patients' age, MMAS, FSOC-S, scores and HAD Anxiety sub-score were not statistically significant (p>0.05). Conclusion: The cognitive function and independence level of the patients is associated with care burden. Furthermore, psychosocial features such as poor social functioning, quality of life and emotional health of caregiver have adverse effects on caregiver burden.

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Informal caregivers of older Muslims diagnosed with cancer: A portrait of depression, social support, and faith

Objective: Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression. Methods: A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire. Results: Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith. Significance of results: Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.

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Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

Background: Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia. Methods: PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies. Results: The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance. Conclusion: Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment. Practical Implications: A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted. 

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What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years. Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

 

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Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries

Background: Although family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience. Objectives: This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB. Methods: The study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia. The 22-item Zarit Burden Interview (ZBI-22) was used to assess caregiver burden CB. Significant CB was defined as a ZBI-22 score ≥ 21. The assistance with basic ADLs was classified into 3 levels according to FCs’ assistance with early/middle/late-loss basic ADLs. The relationship between CB and the assistance with ADLs and other factors was studied. Results: The mean (SD) ZBI-22 score among FCs was 23.4 (9.3) and the majority (128/218, 59%) had significant CB. Eighty-nine percent of FCs assisted with at least one basic ADL. Assistance with late-loss basic ADLs, best supportive care treatment plan and poorer performance status were associated with higher CB (p < 0.0001, =0.018 and = 0.005). However, in logistic regression analysis, only assistance with late-loss ADLs was independently associated with significant CB (OR = 3.4 [95%CI:1.2–9.7], p = 0.024). Conclusion: A substantial proportion of FCs of incurable cancer patients in our region experience significant CB. Family caregivers assisting with late-loss basic ADLs are at risk of significant CB and should be routinely screened for CB. 

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Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: A meta-synthesis of qualitative and quantitative studies

Objective: To investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China. Methods: A search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: Narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach. Results: The literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients' needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers' needs included needs to care for and improve the quality of life of patients, and to care for themselves well. Conclusions: This study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients' demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care. 

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Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review

Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Methods: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) “peer support networks,” (ii) “children with neurodevelopmental and intellectual disabilities” and (iii) “family caregiver outcomes.” Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development. 

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Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis. Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end‐of‐life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. Conclusions: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho‐oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.

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Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis. Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end‐of‐life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. Conclusions: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho‐oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.

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Use of antidepressants among Finnish family caregivers: a nationwide register-based study

Objective: The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. Methods: The study includes all individuals, who received family caregiver’s allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. Results: During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4–45.0) and their controls used 36.2 (35.3–37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6–31.6) and their controls used 21.6 (20.2–23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4–1.5) between 45 and 65 years. Conclusions: Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender. 

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Care for caregivers- a mission for primary care

Background: The number of elderly people living in the community who are limited in daily activities is increasing worldwide. This generates prolonged care, which usually falls on one family member, the family caregiver. Caregivers are prone to develop psychosocial and physical symptoms. As a result, the World Health Organization (WHO) issued a clear directive to assess and support these caregivers. Objectives: The main goals of this study were to assess primary care physicians’ (PCP) awareness to caregivers’ health risks and the extent that they recommended preventive measures to maintain the health of the caregivers. As no suitable instrument existed, a secondary goal was to develop a scale to measure physicians’ awareness to caregivers’ health and preventive treatment and test it’s psychometric properties. Methods: Data were collected from a convenience sample of 201 PCP interviewed with structured questionnaires. Results: The participants’ mean age was 48.5 ± 11.2 years and 53.5% were female. Only 48.5% were Israel medical graduates and 72% were board-certified family physicians. Nearly 34% had been primary caregivers of family members. Most physicians (83.6%) were aware of the primary caregiver’s high-risk for morbidity and mortality, and recommended preventive care. On a multivariate regression, PCP's higher level of risk awareness, their country of medical school and board certification were significant for explaining recommendations for preventive care. However, being a primary caregiver for a sick family member neither contributed significantly to the physicians’ awareness to caregiving risks nor to their preventive care. Conclusion: Although a high percentage of physicians were aware and concerned about caregivers’ health, their preventive care activities were relatively passive. PCPs should take a more active and preventive role for maintaining caregivers’ health. 

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Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting

Background: Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor’s outcomes. Objectives: Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore. Methods: Stroke patients and their informal caregivers were recruited from all five tertiary hospitals in Singapore from December 2010 to September 2013. Informal care comprised of assistance provided by informal caregivers with any of the activities of daily living. Informal care burden was measured by patients’ likelihood of requiring informal care, hours of informal care required, and informal caregivers’ Zarit’s Burden Score. We examined informal care burden at 3-months and 12-months post-stroke. Generalized linear regressions were applied with control variables including patients’ and informal caregivers’ demographic characteristics, arrangement of informal care, and patients’ health status including stroke severity (measured using National Institute of Health Stroke Scale), functional status (measured using Modified Rankin Scale), self-reported depression, and common comorbidities. Results: Three hundred and five patients and 263 patients were examined at 3-months and 12-months. Around 35% were female and 60% were Chinese. Sixty three percent and 49% of the patients required informal care at 3-months and 12-months point, respectively. Among those who required informal care, average hours required per week were 64.3 h at 3-months and 76.6 h at 12-months point. Patients with higher functional dependency were more likely to require informal care at both time points, and required more hours of informal care at 3-months point. Female informal caregivers and those caring for patients with higher functional dependency reported higher Zarit’s Burden. While informal caregivers who worked full-time reported higher burden, those caring for married stroke patients reported lower burden at 3-months point. Informal caregivers who co-cared with foreign domestic workers, i.e.: stay-in migrant female waged domestic workers, reported lower burden. Conclusions: Informal care burden remains high up to 12-months post-stroke. Factors such as functional dependency, stroke severity, informal caregiver gender and co-caring with foreign domestic workers were associated with informal care burden.

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Adaptation and learning processes of stroke survivors and family carers: a scoping review

Background: Knowledge on the processes of adaptation and learning after stroke are scarce, hindering the development of evidence-based public health strategies to promote survivors and family carers' health and wellbeing, across the post stroke trajectory. Objectives: This study aims to assess the available evidence on the processes of adaptation and learning after stroke, by mapping the main barriers and enablers according to the perspectives of stroke survivors and family carers. Methods: A scoping review was performed, following PRISMA-ScR guidelines. The electronic databases PubMed, ISI Web of Science, PsycINFO and SciELO were searched for empirical, peer-reviewed, original, and full-length studies on the processes of adaptation and learning of stroke survivors and family carers, in March 2021. Eligibility and data extraction were conducted by two independent researchers. The main qualitative data were explored by thematic content analysis and quantitative findings were synthesized. Results: The included studies, 29 qualitative and 1 quantitative, were published between 1994 and 2019. Most of the studies were carried out with small samples and without a specific focus on the adaptation and learning processes after stroke. Barriers and enablers to stroke adaptation and learning processes were influenced by physical, psychological and social characteristics. The poor physical and functional status of survivors, the inability to maintaining the Activities of Daily Living, emotional disturbances, lack of support and information, and changes in roles, were identify as main barriers to stroke adaptation. Using coping strategies and having psychological, educational, and financial support were described as enablers. Conclusions: Public health policies and practices should consider the physical, psychological and social barriers and enablers to the stroke adaptation and learning processes to ensure a high-quality long-term care centred on survivors and family carers. Key messages: Robust theoretical and methodological studies, specifically designed to deeply explore and describe the post stroke adaptation and learning processes, are needed. Understand the main barriers and enablers to adaptation and learning after stroke may be useful for developing health education interventions centred on survivors and carers preferences and needs.

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Are informal family caregivers stigmatized differently based on their gender or employment status?: a German study on public stigma towards informal long-term caregivers of older individuals

Background: Stigma and informal caregiving are determinants for health and wellbeing, but few studies have examined stigma towards informal caregiving. Public stigma may be expressed differently towards caregivers depending on their gender and employment status due to societal norms. Therefore, this study analyzes if there is a difference in public stigma shown by the general population toward informal caregivers of care recipients aged 65 years or older based on the observed caregiver’s gender or working status. Methods: A cross-sectional study was conducted in Germany. Data from 1038 adult participants from the general population in Germany were assessed with an Online-Survey. They were recruited with a quota-system based on the German micro census. Participants were randomly assigned to one of 16 vignettes describing a caregiving situation, which varied in the caregiver’s gender and working status, and care recipient’s gender and type of impairment. After reading the vignette, they were asked to provide sociodemographic information and complete three questionnaires on public stigma assessing their emotional (Emotional Reactions), behavioral (Social Distance) and cognitive reaction (Statements on informal caregivers) to the caregiver described in the vignette. Regression analyses, adjusted for sociodemographic data of the participants, were conducted. Results: Findings indicated an association between reading about male caregivers and increased social distance, compared with reading about female caregivers. Reading about working caregivers was associated with decreased social distance and increased appreciative statements, compared to reading about non-working caregivers. Analyses after stratifying by gender of the caregiver in the vignette indicated an association between reading about female working caregivers and increased appreciative statements, compared to reading about female non-working caregivers. When stratifying by working status, an association was found between reading about male working caregivers and increased social distance, when compared to reading about female working caregivers. Conclusions: This study’s findings indicate that gender and working status of the perceived informal caregivers are of relevance to the public stigma directed towards these caregivers. Male and non-working informal caregivers were shown more public stigma than female and working informal caregivers. Thus, interventions to reduce public stigma, in particular towards male and non-working caregivers, are recommended.

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Anxiety, depression, and stress in caregivers of children and adolescents with mental disorders in Ghana and implications for medication adherence

Objective: This study assessed levels of anxiety, depression, and stress among family caregivers of children and adolescents with mental disorders in Ghana and the implication on medication adherence. Design: A cross-sectional study. Setting: The study was conducted at the outpatient departments of the three main public psychiatric hospitals in Ghana. Participants: Two hundred and ten non-paid family caregivers of children and adolescents with mental disorders were recruited for this study. Main Outcome Measure: The study assessed symptoms of anxiety, depression and stress among the caregivers and estimated caregiver-reported medication adherence. Results: About 56.2%, 66.2% and 78% of the caregivers experienced severe anxiety, severe depression and moderate to severe stress symptoms respectively. From the multiple logistic regression model, while anxiety was significantly affected by religion and education, depression was influenced by sex, age, marital status, proximity to facility, and employment status. Female caregivers had about four times higher odds of being depressed compared to male caregivers (aOR: 3.81, 95% CI: 1.66 - 8.75). The caregiver-reported medication adherence was 11.9%. Anxiety was significantly predictive of medication adherence. Conclusion: Most family caregivers of children and adolescents with mental disorders experienced symptoms of anxiety, depression and stress with anxiety having implications for medication adherence. The study findings underscore the need to consider psychological characteristics of caregivers and the provision of mental health support for them, as part of the routine health care for children and adolescents with mental disorders. 

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A systematic review of psychosocial interventions for Latinx and American Indian patient-family caregiver dyads coping with chronic health conditions

Background: Latinx and American Indians experience high rates of chronic health conditions. Family members play a significant role as informal caregivers for loved ones with chronic conditions and both patients and family caregivers report poor psychosocial outcomes. Objectives and Methods: This systematic review synthesizes published studies about psychosocial interventions for Latinx and American Indian care dyads to determine: (i) the benefits of these interventions; (ii) their distinguishing features or adaptations, and; (iii) recommendations for future intervention development. Findings: Out of 366 records identified, seven studies met inclusion criteria. Interventions demonstrated benefits to outcomes such as disease knowledge, caregiver self-efficacy and burden, patient and caregiver well-being, symptom distress, anxiety and depression, and dyadic communication. Distinguishing features included tailoring to cultural values, beliefs, and delivery preferences, participants’ level of acculturation, and population-specific issues such as migratory stressors and support networks. Conclusions: Based upon this review, six recommendations for future intervention development are put forth. 

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Association between having cancer and psychological distress among family caregivers using three years of a nationwide survey data in japan

Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers’ psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers’ distress. Results: The sample of family caregivers consisted of mostly females (69.3%) and people within the 40–64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05–1.69) among family caregivers. Conclusions: Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress. 

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Beyond nostalgia: Older people's perspectives on informal care in rural Flanders

Background: Flanders (Belgium) is aging at high speed. In 2060, almost one in three (32 percent) will be older than 60. The number of people aged 80 and over will increase from more than 400,000 today to nearly 800,000 in 2060. This demographic change can be witnessed throughout the entire region, yet older people are overrepresented in rural areas. A large majority of older people is ‘aging in place’. This often occurs in places that witness a severe decline in basic facilities and that suffer from a loss of its young(er) population. Nevertheless, policies in Flanders strongly support aging in place, while emphasizing the role of informal caregivers. Objective: This paper explores older people's perceptions of and experiences with informal care in rural Flanders. Methods: Based on qualitative in-depth interviews, we focus on the role of family members and neighbors in providing informal care for older people living at home in two different rural areas in Flanders (‘Westhoek’ and ‘Kempen’). Findings: The analysis shows how, in both regions, receiving care from children and neighbors is simply not always perceived as a valid and realistic option by our respondents, and this for different reasons. It concludes that the current focus of elderly policy in Flanders on aging in place and the strong emphasis on the role of informal caregivers work only for those older people whose informal caregivers (in practice mostly children) live nearby. This depends strongly, of course, on spatial and economic factors. Also, neighbors are not the cohesive group they are presumed to be. Conclusions: We thus have to move beyond the nostalgic idea that neighbors and close family members can or will actively engage in informal care. 

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A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa

Background/objective: Recessive dystrophic epidermolysis bullosa (RDEB) is a genetic collagen disorder characterized by skin fragility leading to blistering, wounds, and scarring. There are currently no approved curative therapies. The objective of this manuscript is to provide a comprehensive literature review of the disease burden caused by RDEB. Methods: A systematic literature review was conducted in MEDLINE and Embase in accordance with PRISMA guidelines. Observational and interventional studies on the economic, clinical, or humanistic burden of RDEB were included. Results: Sixty-five studies were included in the review. Patients had considerable wound burden, with 60% reporting wounds covering more than 30% of their body. Increases in pain and itch were seen with larger wound size. Chronic wounds were larger and more painful than recurrent wounds. Commonly reported symptoms and complications included lesions and blistering, anemia, nail dystrophy and loss, milia, infections, musculoskeletal contractures, strictures or stenoses, constipation, malnutrition/nutritional problems, pseudosyndactyly, ocular manifestations, and dental caries. Many patients underwent esophageal dilation (29–74%; median dilations, 2–6) and gastrostomy tube placement (8–58%). In the severely affected population, risk of squamous cell carcinoma (SCC) was 76% and mortality from SCC reached 84% by age 40. Patients with RDEB experienced worsened quality of life (QOL), decreased functioning and social activities, and increased pain and itch when compared to other EB subtypes, other skin diseases, and the general population. Families of patients reported experiencing high rates of burden including financial burden (50–54%) and negative impact on private life (79%). Direct medical costs were high, though reported in few studies; annual payer-borne total medical costs in Ireland were $84,534 and annual patient-borne medical costs in Korea were $7392. Estimated annual US costs for wound dressings ranged from $4000 to $245,000. Patients spent considerable time changing dressings: often daily (13–54% of patients) with up to three hours per change (15–40%). Conclusion: Patients with RDEB and their families/caregivers experience significant economic, humanistic, and clinical burden. Further research is needed to better understand the costs of disease, how the burden of disease changes over the patient lifetime and to better characterize QOL impact, and how RDEB compares with other chronic, debilitating disorders. 

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A socially prescribed community service for people living with dementia and family carers and its long‐term effects on well‐being

Background: Support services for people with dementia are variable depending on the area or town they live. People with dementia and family carers can often get very little support after a diagnosis. Services might not be suitable or they may not be aware of the service in the first place. Objective: The aim of this study was to evaluate a socially prescribed community service provided to people with dementia and family carers offering physical and mental activities. Methods: People with dementia and family carers were recruited from a community centre in the North West of England to complete in this study. Participants provided demographic information and completed the Short Warwick‐Edinburgh Mental Well‐Being Scale at baseline, and after 3 and 6 months. Postcode data were used to generate an Index of Multiple Deprivation score for information on participants’ socioeconomic background. Data were analysed using paired samples t‐tests to compare well‐being scores between baseline and follow‐up assessments. Results: A total of 25 people with dementia (n = 14) and family carers (n = 11) participated in the service. Visits ranged from 1 to 36, with 22 and 15 participants completing the 3‐ and 6‐month follow‐up respectively. Some reasons for discontinuation were lack of transport and other commitments. Most participants lived in some of the most disadvantaged neighbourhoods. Compared to baseline, well‐being was significantly higher at both follow‐ups. Conclusions: This is one of the first studies reporting the benefits of a social prescribing service in dementia. Future implementation work needs to design an implementation plan so that the service can be implemented in other community centres across the country.

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A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient. 

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

Objectives: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.

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The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

Methods: We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Results: Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43). Despite the higher prevalence of symptoms, they did not access healthcare services more and may seek healthcare for psychological distress less often (0.64; 0.40, 1.02). In general, socioeconomic disadvantage was associated with worse health. Pakistani ethnicity (versus white British) and prenatal consultation were strongly associated with higher postnatal consultation rates. Prenatal ill health, healthcare use and socioeconomic status are important factors in the detection of postnatal ill health via primary care services. Conclusions: If caregiver burden and the risk of under-detecting (and thus under treating) caregiver ill health is not addressed during the preschool period health inequalities between caregivers and other mothers and their families may persist and grow. The health of mothers of young disabled children, in particular their unmet health needs, warrants attention in research and clinical practice.

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Community participation of families of children with profound intellectual and multiple disabilities in South Africa

Background: Families struggle to support family members with profound intellectual and multiple disabilities (PIMD), especially in low resourced settings where formal services may not be available. Method: The adapted Family Community Participation survey, measuring perceptions of community participation, was administered to 67 primary caregivers of children with PIMD in Cape Town by community-based rehabilitation workers. Results: Families were most satisfied going to religious activities and getting together with family and friends. They were most dissatisfied with doing activities together in public and working or volunteering outside the home. Barriers to participation included negative attitudes, insufficient money and unavailability of community activities. Transportation, safety and security were additional challenges. Conclusions: Participants advocate awareness raising, community support and provision of services to address barriers to community participation. Families should be consulted on community issues to integrate their specific family needs into the overall needs of the community.

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The social burden experienced by families caring for members living with cancer in KwaZulu-Natal, South Africa

Background: Cancer is a global public health problem and it affects people in different ways. Family caregivers (FCs) play an essential role in caring for patients with cancer, and thus, they experience many caregiver burdens that go unnoticed. Aim: This research study explored the social burden that families experience in providing care to their family members living with cancer. Setting: This study was conducted in Durban and Pietermaritzburg, cities located in KwaZuluNatal, South Africa. Methods: This was a qualitative study using the interpretative phenomenological approach that was ideal for understanding FCs subjective perspectives on their cancer caregiving experience. Data saturation were reached at 20 in-depth interviews. Results: Two major themes culminated from the data analysis; dynamics of a cancer diagnosis and psychosocial impact of a cancer diagnosis with respective sub-themes. Themes centred around the relational impact of a cancer diagnosis with FCs experiencing a shift in this dynamic and a disturbance to normality in social life. Social support systems were found to play a meaningful role in mitigating the impact of a cancer diagnosis with financial, psychosocial and educational support considered essential needs. Conclusion: Cancer caregiving is a challenging task that also presents opportunities for strengthening family bonds as they evolve in new paths. A family-centred care approach is recommended as a form of social support with further collaboration with health care providers for guided patient care. If the needs of FCs are addressed accordingly through health care policies and interventions, FCs may be able to provide better care and support for their family members with cancer and thus positively impact cancer survivorship.

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Tensions in support for family caregivers of people with dementia in Singapore: A qualitative study

Background: Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers. Method: To understand family support among primary caregivers in Singapore, 24 semi-structured interviews were conducted. Thematic analysis found four themes: excuses for lack of physical support for the caregiver, tensions between cultural expectations of caregiving and the provision of support, unmet emotional support, and lack of awareness of dementia and caregiving needs. Findings: Caregivers rationalized and forgave the absence of physical support but were frustrated when the lack of support impacted people with dementia. This was seen as a lack of fulfilling cultural obligations of caring for elderly parents. The caregivers also felt frustrated with the lack of emotional support provided to them, but these were unspoken between the caregiver and the family members. Insufficient and unhelpful support giving was exacerbated with the perception of family members’ limited understanding of the demands of caregiving. Conclusion: The findings offer four practical suggestions to address unmet support needs. First, public education is needed to enhance general knowledge about the symptoms and progression of dementia. Second, help is needed to address miscommunication about support within the family. Third, the development of guidebooks is needed to help family caregivers communicate with family members about their various support needs. Fourth, the relationship between cultural expectation and caregiving must be understood within the context of modernity and urbanism. 

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Stress and Depression in Family Members of Patients with Dementia in Urban and Rural Communities: Cross-Sectional Surveys in Korea

Background: Re compared the associations of socioeconomic factors with stress and depression among family members living with a dementia patient in urban and rural areas of South Korea. Methods: Data were collected from 9,730 (4,560 urban and 5,170 rural) participants in the Korean Community Health Survey from 2014-17. The variable of interest was the presence of a cohabitating dementia patient, and the dependent variables were stress and depression. Results: Family members living with a dementia patient in rural areas had a significantly lower socioeconomic status (education, household income, marital status, and employment) than those living in urban areas (p<0.001). In addition, family members living with a dementia patient in rural areas reported statistically significantly less stress and depression than did those in urban areas after adjusting for related factors(rural stress OR=0.87, 95% CI=0.80-0.95; rural depression OR=0.75, 95% CI=0.66-0.85). Female gender and a low family income were associated with stress and depression in both rural and urban areas. Age, educational attainment, number of family members, marital status, and employment status differed slightly between urban and rural areas. Conclusion: The socioeconomic factors associated with stress and depression differ slightly in the rural and urban areas of South Korea.

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Peer support interventions for parents and carers of children with complex needs

Background: Parents and family carers of children with complex needs experience a high level of pressure to meet children's needs while maintaining family functioning and, as a consequence, often experience reduced well-being and elevated psychological distress. Peer support interventions are intended to improve parent and carer well-being by enhancing the social support available to them. Support may be delivered via peer mentoring or through support groups (peer or facilitator led). Peer support interventions are widely available, but the potential benefits and risks of such interventions are not well established. Objectives: To assess the effects of peer support interventions (compared to usual care or alternate interventions) on psychological and psychosocial outcomes, including adverse outcomes, for parents and other family carers of children with complex needs in any setting. Search methods: We searched the following resources. • Cochrane Central Register of Controlled Trials (CENTRAL; latest issue: April 2014), in the Cochrane Library. • MEDLINE (OvidSP) (1966 to 19 March 2014). • Embase (OvidSP) (1974 to 18 March 2014). • Journals@OVID (22 April 2014). • PsycINFO (OvidSP) (1887 to 19 March 2014). • BiblioMap (EPPI-Centre, Health Promotion Research database) (22 April 2014). • ProQuest Dissertations and Theses (26 May 2014). • metaRegister of Controlled Trials (13 May 2014). We conducted a search update of the following databases. • MEDLINE (OvidSP) (2013 to 20 February 2018) (search overlapped to 2013). • PsycINFO (ProQuest) (2013 to 20 February 2018). • Embase (Elsevier) (2013 to 21 February 2018). We handsearched the reference lists of included studies and four key journals (European Child and Adolescent Psychiatry: 31 March 2015; Journal of Autism and Developmental Disorders: 30 March 2015; Diabetes Educator: 7 April 2015; Journal of Intellectual Disability Research: 13 April 2015). We contacted key investigators and consulted key advocacy groups for advice on identifying unpublished data. We ran updated searches on 14 August 2019 and on 25 May 2021. Studies identified in these searches as eligible for full-text review are listed as "Studies awaiting classification" and will be assessed in a future update. Selection criteria: Randomised and cluster randomised controlled trials (RCTs and cluster RCTs) and quasi-RCTs were eligible for inclusion. Controlled before-and-after and interrupted time series studies were eligible for inclusion if they met criteria set by the Cochrane Effective Practice and Organisation of Care Review Group. The comparator could be usual care or an alternative intervention. The population eligible for inclusion consisted of parents and other family carers of children with any complex needs. We applied no restriction on setting. Data collection and analysis: Inclusion decisions were made independently by two authors, with differences resolved by a third author. Extraction to data extraction templates was conducted independently by two authors and cross-checked. Risk of bias assessments were made independently by two authors and were reported according to Cochrane guidelines. All measures of treatment effect were continuous and were analysed in Review Manager version 5.3. GRADE assessments were undertaken independently by two review authors, with differences resolved by discussion. Main results: We included 22 studies (21 RCTs, 1 quasi-RCT) of 2404 participants. Sixteen studies compared peer support to usual care; three studies compared peer support to an alternative intervention and to usual care but only data from the usual care arm contributed to results; and three studies compared peer support to an alternative intervention only. We judged risk of bias as moderate to high across all studies, particularly for selection, performance, and detection bias. Included studies contributed data to seven effect estimates compared to usual care: psychological distress (standardised mean difference (SMD) -0.10, 95% confidence interval (CI) -0.32 to 0.11; 8 studies, 864 articipants), confidence and self-efficacy (SMD 0.04, 95% CI -0.14 to 0.21; 8 studies, 542 participants), perception of coping (SMD -0.08, 95% CI -0.38 to 0.21; 3 studies, 293 participants), quality of life and life satisfaction (SMD 0.03, 95% CI -0.32 to 0.38; 2 studies, 143 participants), family functioning (SMD 0.15, 95% CI -0.09 to 0.38; 4 studies, 272 participants), perceived social support (SMD 0.31, 95% CI -0.15 to 0.77; 4 studies, 191 participants), and confidence and skill in navigating medical services (SMD 0.05, 95% CI -0.17 to 0.28; 4 studies, 304 participants). In comparisons to alternative interventions, one pooled effect estimate was possible: psychological distress (SMD 0.2, 95% CI -0.38 to 0.79; 2 studies, 95 participants). No studies reported on adverse outcomes. All narratively synthesised data for psychological distress (compared to usual care - 2 studies), family functioning (compared to usual care - 1 study; compared to an alternative intervention - 1 study), perceived social support (compared to usual care - 2 studies), and self-efficacy (compared to alternative interventions - 1 study) were equivocal. Comparisons with usual care showed no difference between intervention and control groups (perceived social support), some effect over time for both groups but more effect for intervention (distress), or mixed effects for intervention (family function). Comparisons with alternative interventions showed no difference between the intervention of interest and the alternative. This may indicate similar effects to the intervention of interest or lack of effect of both, and we are uncertain which option is likely. We found no clear evidence of effects of peer support interventions on any parent outcome, for any comparator; however, the certainty of evidence for each outcome was low to very low, and true effects may differ substantially from those reported here. We found no evidence of adverse events such as mood contagion, negative group interactions, or worsened psychological health. Qualitative data suggest that parents and carers value peer support interventions and appreciate emotional support. Conclusions: Parents and carers of children with complex needs perceive peer support interventions as valuable, but this review found no evidence of either benefit or harm. Currently, there is uncertainty about the effects of peer support interventions for parents and carers of children with complex needs. However, given the overall low to very low certainty of available evidence, our estimates showing no effects of interventions may very well change with further research of higher quality. 

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Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer-A Mixed-method Study

Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver's appraisal of caregiving and (4) caregiver's perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver's life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.

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Correlation between burden and quality of life among family caregiver of patients undergoing hemodialysis

Background: In Indonesia, taking care of sick family member is an obligation for other family members. Family caregivers not only involve in patients’ physical health, but also psychological and financial aspect that sometimes also cause burden for them. However, most of them often ignore their health status and wellbeing. Objectives: Therefore, current study aimed to identify the correlation between burden and quality of life among family caregiver of patients having hemodialysis. This was a cross sectional study in 80 family caregivers. Methods: Data were collected using Zarit Burden Inventory and SF-36. Pearson Correlation test was performed. It is found that most of the caregiver of patient undergoing hemodialysis was the spouse (62.8%). As many as 53.8% family caregiver experienced no burden in taking care of patients. Overall, they showed a moderate score in 8 domain of quality of life. Burden was significantly correlated with general health (p = 0.001), bodily pain (p = 0.002), social functioning (p = 0.035), role-functioning physical (p = 0.043), and role-functioning emotional (p = 0.048). Conclusions: To sum up, most of family caregiver felt no burden in taking care of patients undergoing hemodialysis and it is correlated with their quality of life. Thus, in taking care patients undergoing hemodialysis, nurses should also pay attention to their family caregiver. 

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Coronavirus and the social impacts on unpaid carers in Great Britain: April 2021

Indicators from the Office for National Statistics’ Opinions and Lifestyle Survey to understand the impacts of the coronavirus (COVID-19) pandemic on unpaid carers in Great Britain.

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Timely Communication Through Telehealth: Added Value for a Caregiver During COVID-19

Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic. Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts. Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis. Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period. Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease. 

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Eldercare in Japan: Cluster Analysis of Daily Time-Use Patterns of Elder Caregivers

Methods: Using the data of the 2006 Japanese Survey on Time Use and Leisure Activities, we perform cluster analysis and identify seven unique patterns of daily time-use patterns of co-resident family elder caregivers: (1) ‘Overworkers’, (2) ‘Full-time Workers’, (3) ‘Part-time Workers’, (4) ‘Intensive Caregivers’, (5) ‘Houseworkers’, (6) ‘Leisurely’, and (7) caregivers, who needed medical attention on the diary day (‘Emergency Diaries’). Results: Our results show that the ‘Houseworkers’ and ‘Intensive Caregivers’ spend the most time on adult caregiving activities. Care activities for ‘Houseworkers’ are more likely to coincide with longer housework hours, increasing the total unpaid work volume. Conclusions: The analysis of demographic profiles suggests that similar daily patterns on weekdays and weekends do not belong to people with the same demographic characteristics. For instance, although on weekdays, ‘Leisurely Caregivers’ are mostly represented by the elderly taking care of other elderly, people of any age can belong to this category on weekends. Among all types of caregivers, only 'Intensive Caregivers' are as likely to be men as they can be women, suggesting that when the need for eldercare increases, family caregivers of any gender will step in.

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Associations between perceived stress and quality of life in gynaecologic cancer patient-family caregiver dyads

Purpose: This study aims to explore the level of stress perceived and quality of life (QOL) by gynaecologic cancer (GC) patients and family caregivers’ dyads. Methods: In this cross-sectional study, 86 dyads were recruited from the gynaecological oncology department of a general hospital in Taichung City, Taiwan. The patients and family caregivers completed a sociodemographic information sheet, the Perceived Stress Scale, and the Taiwanese version of World Health Organization Quality of Life-BREF questionnaire. Data were analysed using descriptive statistics and Pearson's correlations. This study used the actor-partner interdependence model (APIM) with distinguishable dyads to examine the effect of patients' and caregivers' perceived stress on QOL in patient-caregiver dyads. Results: GC patients' and caregivers' level of QOL was influenced by their own stress level (actor effect). Caregivers' stress was statistically negatively associated with the patients’ QOL (partner effect); however, there were no partner effect from GC patients to caregivers. Both patients and family caregivers with higher perceived stress had poorer QOL. Therefore, we identified that stress has some level of actor and partner effects on QOL in GC patient-family caregiver dyads. Conclusions: Family caregivers' stress displayed both actor and partner effects within the first year of the cancer diagnosis; therefore, patient-and caregiver-based interventions, such as stress reduction strategies, should be developed to enhance patients' and caregivers’ QOL and stress management ability. 

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A comprehensive assessment of informal caregivers of patients in a primary healthcare home-care program

Background: Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers’ problems. Methods: A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Findings: Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers’ status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers’ burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers’ health status and wellbeing. Conclusions: The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers’ conditions. : 

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“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions. Methods: Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes. Results: Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness. Conclusions: Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands. 

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“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Methods: Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results: Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions: In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

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'This is Still All about Love': Practitioners' Perspectives of Working with Family Carers Affected by the Harmful Behaviour of the Older Person for Whom They Care

Objectives: This article explores a hidden and under-acknowledged dimension of caring in family life: when older people with care needs act in a harmful, abusive or violent way towards the family member(s) who cares for them. Methods: Thirty-eight health and social care professionals, working in the UK, took part in five focus groups to explore their experience of working with families in this situation. The group discussions were stimulated by vignettes developed from interviews with carers affected by harmful behaviour, and the data generated using this method were analysed using a thematic approach. Findings: There were two principal findings: (i) 'carer harm' is a serious and under-acknowledged problem, which practitioners have extensive experiential knowledge of and (ii) practitioners face considerable practical and ethical challenges working with affected families. Conclusions: Drawing on Miranda Fricker's concept of epistemic injustice, we discuss how contemporary social, legal and policy systems can make it difficult for practitioners to identify and meet the needs of affected families. Finally, we explore the role of social workers-and the support they need as a professional group-to work alongside a 'hidden' group of families seeking to manage the intersection of care, harm and intimacy in later life.

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'She misses the subtleties and I have to help - help to make the invisible visible': parents' role in supporting adults with intellectual and developmental disabilities with intimate relationships

Background: People with intellectual and developmental disabilities often need support to develop and maintain intimate relationships; however, little is known regarding the role of family carers in this area. Methods: Focus groups were conducted with 19 family members to explore the support they provide to people with intellectual and developmental disabilities to find a potential partner and any support they may have to provide to support/develop an existing relationship. Findings: Family members provided similar support in this area as support staff, including both practical and emotional support. Conclusions: More needs to be done to support the family members providing this support, such as access to specialist resources and advice, as well as facilitated opportunities to discuss concerns.

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Who is taking care of the Chinese functionally impaired older people? The characteristics of family caregivers from China Health and Retirement Longitudinal Study

Objective: To investigate caregiving in terms of personal, family and living arrangement among Chinese functionally impaired older people. Methods: A secondary cross‐sectional analysis of data obtained from China Health and Retirement Longitudinal Study (CHARLS) was performed. Among 6,252 participants aged 65 years or older, people with at least one indicator of Activities of Daily Living Scales (ADLs) of disabilities were included in this research. Statistical analyses included chi‐square tests and multiple logistic regression modelling. Results: Data of 973 functionally impaired people aged 65 and over, and 2772 adult offspring were extracted and analysed. The level of impairment, age, gender, marital status of the functionally impaired older people, adult offspring's income and living status were significantly associated with caregiving types. Conclusion: This research describes the characteristics of functionally impaired older people and their caregivers, which may help improve the efficiency, quality and equity within the Chinese social care system.

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When Financial Health Is Tied to Mental Health: Predictors of Hospice Cancer Caregivers' Psychological Well-Being (SCI949)

Objectives: Identify 2-4 factors sociodemographic, caregiving, or economic factors associated with cancer caregivers' mental health outcomes during hospice. Evaluate how financial well-being affects the mental health of cancer caregivers and discuss implications for policy and practice. Background: End-of-life caregiving is associated with poorer mental health which may impact bereavement. Research Objectives To examine the sociodemographic, caregiving, and economic characteristics of mental health among hospice family caregivers of cancer patients. Methods: Informal caregivers were purposively recruited from hospices from four states. Participants completed demographic, caregiving, and mental health survey items. The Medical Outcomes Social Support Survey (α=0.85), Zarit Caregiving Burden Inventory (α=0.89), PROMIS mental health subscale (α=0.80), Hospital Anxiety and Depression scale (anxiety- α=0.88; depression α=0.80), and the Positive Affect and Well-being Scale (α=0.94) were administered. Hierarchical linear regression models (base models: sociodemographic factors, final models: sociodemographic and caregiving factors) were generated in SPSS version 24 with significance set at p<0.05. Results: Data from 102 informal caregivers were analyzed. Participants had a mean age of 58.93 years (SD=14.24). Majority of participants were female (72.55%), spouses (51.96%), and non-Hispanic White (80.00%). Over 60% cared for patients for less than 2 years, 51.96% had less than a college degree, and 46.53% were not employed. Most (77.78%) described their financial situation as comfortable or more than adequate. Controlling for sociodemographic and caregiving characteristics, higher financial satisfaction (B=1.47), social support (B=0.05), and lower caregiving burden (B=-0.11) were associated with more positive overall mental health (R2=0.56, ΔR2=0.27, p<0.001). Younger age (B=-0.11) and higher caregiving burden (B=0.17) were associated with increased anxiety (R2= 0.46, ΔR2=0.15, p<0.001) while financial satisfaction (B=-1.26), lower social support (B=-0.04), and higher caregiving burden (B=0.16) were associated with depression (R2=0.47, ΔR2= 0.26, p<0.001). Less proximal caregiving relationship (child vs. spouse; other relationship vs. child; B=2.14), financial satisfaction (B=2.03), social support (B=0.10), and lower caregiving burden (B=-0.26) were associated with greater well-being (R2=0.48, ΔR2=0.27, p<0.001). Conclusion: Financial satisfaction remains a major factor of caregivers' psychological well-being even after controlling for other variables. Implications for Research, Policy, or Practice This study identifies subgroups of caregivers who may benefit from additional hospice support services.

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What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

Context: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home. Methods: Twenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains. Results: Forty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed. Conclusion: Knowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.

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Well‐being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai, China

Background: A series of policies aimed toward rational resource allocation of long‐term care have being actively discussed since the launch of the social long‐term care insurance in Shanghai, and it is important to take a societal perspective for informed decision‐making. Objectives: This study aims to explore factors that are associated with well‐being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well‐being valuation method to monetise informal caregivers' well‐being losses in a developing country. Methods: 310 informal caregivers of applicants for social long‐term care insurance in Shanghai were interviewed. Univariate and multivariate analyses were conducted to explore the associated factors with life satisfaction of the caregivers. The monetary values of an additional hour of caregiving with and without specification of care tasks were estimated by the well‐being valuation method. Results: Life satisfaction was consistently associated with monthly income, health status, and caring hours of the caregivers. The money needed to compensate one additional hour of caring per week was 12.58 CNY (0.3% of the monthly income), and 96.95 CNY (2.0% of the monthly income) for activities of daily living (ADL) tasks. Income, health status, and caregiving are significantly associated with well‐being of informal caregivers. Conclusions: Caregivers in relatively poor health condition and/or involved in more ADL tasks should be particularly considered in supporting policies in Shanghai.

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Well‐being and needs of Malay carers of people with mental illness in Singapore

Background: Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well‐being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. Methods: A mixed methods qualitative dominant research approach was used to explore the well‐being and needs of Malay carers in a voluntary welfare organisation. The Kessler‐10, Friendship Scale and Carers' and Users' Expectations of Services—Carer version were used to assess the needs and well‐being of 17 Malay carers. Results: Findings show that Malay carers experienced poor well‐being and had numerous unmet needs. Four main themes were found: (a) Concerns related to relatives with mental illness, (b) Mental health practices related to carers, (c) Holistic support for carers and (d) Preference for greater spiritual support in mental health. Recovery‐oriented mental health practice implications are discussed. Conclusion: Spirituality of Malay carers needs to be given greater consideration in recovery‐oriented mental health services.

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“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

Background: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Methods: Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Findings: Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities; maintaining the carer’s own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Conclusion: Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

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“We are humans after all”: Family caregivers’ experience of caring for dependent older adults in Brazil

Objective: This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. Methods: This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus. Findings: The thematic analysis yielded three categories: motivations for taking on the caregiving role, influences on the family caregiver’s life, coping, and self-care modalities. The care assumed is influenced by affective relationships with older adults and ethical and moral responsibilities. The influences are related to the lack of preparation for caregiving, financial hardship, restricted freedom, and physical and mental health problems. Coping strategies were religion, spirituality, turn-taking between family caregivers, and learning about the tasks. Conclusions: Women predominate in caregiving due to cultural, ethical, and moral reasons. However, family caregivers often lack guidance and require protection and a support network. 

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Views of patients with advanced disease and their relatives on participation in palliative care research

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusions: Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.

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Validity and reliability of the Spanish caregiver reaction assessment scale for caregivers of people with dementia

Aim: Of the few instruments available to measure the important, positive aspects of caring, the Caregiver Reaction Assessment is regarded as the most suitable, but there is no validated Spanish version. The aim of this study was to translate the Caregiver Reaction Assessment into Spanish and assess its psychometric properties. Methods: The Caregiver Reaction Assessment was translated into Spanish and then back translated. Validation included construct validity, criterion validity and reliability: 287 interviews were conducted with informal caregivers of patients with dementia between November 2010 and April 2012. Results: Principal component analysis confirmed the original instrument's five subscales. Criterion validity showed a moderate negative correlation between the impact on health and the EQ‐5D (r = −.43), that is, a greater impact on health correlated with lower health‐related quality of life. The Caregiver Reaction Assessment showed good internal consistency, with a Cronbach alpha of .804, and good temporal stability for the distinct subscales, with intraclass correlation coefficients varying from .683 to .729 (p < .001). Conclusion: The Caregiver Reaction Assessment is a reliable, valid instrument for the measurement of the reactions of informal caregivers of patients with dementia, with good psychometric properties.

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A Validation Study of the Revised Caregiving Burden Instrument in Korean Family Caregivers of Stroke Survivors

Background: The purpose of the present study was to examine the internal consistency reliability and construct validity of the Caregiving Burden Instrument in Korean informal caregivers of stroke survivors. Methods: A descriptive survey design was used with a convenience sample of 208 primary caregivers of stroke survivors. Internal consistency reliability was assessed using Cronbach’s alpha coefficients. Construct validity was assessed using exploratory and known-group analysis. Results: Each subscale and the total scale demonstrated satisfactory internal consistency reliability. Exploratory factor analysis identified five factors: family support, patient’s dependency, physical health, financial burden, and psychological health, which together accounted for 62.7% of the variance. Known-group analysis indicated that caregivers with more than one year of experience reported significantly higher mean scores for the total burden score and its five subscales compared to those with less than one year. Conclusions: This 23-item instrument demonstrates good internal consistency reliability and construct validity. The tool can be used to effectively assess burden in caregivers of stroke survivors and the data obtained can form the basis for the development of family interventions.

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Validating the Chinese version of the Cancer Survivors' Partners Unmet Needs measure (C‐CaSPUN) and exploring unmet needs in Chinese cancer survivor–family caregiver dyads

Objectives: To evaluate the psychometric properties of the C‐CaSPUN in Chinese family caregivers (FCs) of cancer survivors (CaS) and to compare the unmet needs of CaS‐FC dyads. Methods: A questionnaire survey, consisting of five Chinese version measurement scales, was used to collect data from CaS‐FC dyads. Statistical methods used included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Cronbach's α, intraclass correlation coefficient (ICC) and Pearson's correlation. Results: Participants consisted of 610 survivor–caregiver dyads. EFA and CFA established the four‐factor construct C‐CaSPUN, comprising relationship impact and life perspective, information and health care, quality of life (QoL) and survivorship care. All of the C‐CaSPUN scales had good internal reliability (Cronbach's α ≥ 0.752). The ICC for test–retest ranged from 0.645 to 0.782 at the scale level, with an average ICC value of 0.653. The concurrent validity was evidenced by C‐CaSPUN being negatively associated with SF‐12 MCS and positively related to anxiety and/or depression. In addition, the correlation coefficient scores between C‐CaSPUN factors and the C‐CaSUN total scale ranged from moderate to good (r = 0.505–0.671). Conclusions: Study findings may support the reliability and validity of the C‐CaSPUN in measuring the unmet needs of FCs of Chinese CaS.

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Willingness and preparedness to provide care: interviews with individuals of different ages and with different caregiving experiences

Background: At present, the provision of informal care to older relatives is an essential pillar of the long-term care system in Germany. However, the impact of demographic and social changes on informal caregiving remains unclear. Methods: Thirty-three semi-structured interviews were conducted with care consultants, informal caregivers and people without any caregiving experience to explore if people are willing to provide older adult care and how prepared these are with regard to the possibility of becoming care dependent themselves. Results: In total, three main categories (willingness to provide care, willingness to receive care and information as preparation) with several sub-categories were identified during the content analysis. While almost all interviewees were willing to provide care for close family members, most were hesitant to receive informal care. Other factors such as the available housing space, flexible working hours and the proximity of relatives were essential indicators of a person’s preparedness to provide informal care. It is, however, unclear if care preferences change over time and generations. Six out of 12 informal caregivers and nine out of 14 care consultants also reported an information gap. Because they do not possess adequate information, informal caregivers do not seek help until it is too late and they experience high physical and mental strain. Despite the increased efforts of care consultants in recent years, trying to inform caregivers earlier was seen as almost impossible. Conclusions: The very negative perception of caregiving as a burden was a reoccurring theme throughout all interviews and influenced people’s willingness to receive care as well as seeking timely information. Despite recent political efforts to strengthen home-based care in Germany, it remains unclear whether political efforts will be effective in changing individuals’ perceptions of informal caregiving and their willingness to be better prepared for the highly likely scenario of having to care for a close relative or becoming care dependent at a later stage in life.

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'The Woman Gives': Exploring gender and relationship factors in HIV advance care planning among African American caregivers

Aims and objective: Advance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race. Background: Previous literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP. Design: The study was mixed methods and observational. Methods: Participants completed self‐report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor. Results: Less than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'. Conclusions: The present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender‐specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships. Relevance to Clinical Practice: Results underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life‐sustaining treatments at end‐of‐life. ACP is crucial now more than ever, as COVID‐19 complicates care for older adults with HIV at high risk of complications.

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Work, Leisure Time Activities, and Mental Health among Family Caregivers of the Elder People in Japan

Background: In Japan, there is a high incidence of family members caring for their elderly. To facilitate this, caregivers often quit their jobs, work reduced hours, and forfeit leisure activities. Objectives: This study examined the relationship between the mental health of the caregivers and the sacrifices and adjustments they make to care for the elderly. Methods: A cross-sectional survey was conducted with responses from 171 caregivers. Referencing Pearlin’s stress process model, the relationship among five types of work change, four types of leisure activity quitting, caregivers’ subjective care burden, and depression were analyzed using t-test and multiple regression analysis. Methods: Caregivers who quit their work or other home activities had significantly more daily living care responsibilities than those who did not. Moreover, caregivers who gave up leisure activities had a greater sense of subjective care burden than those who did not. The experience of giving up peer activities and taking leave of absence from work was significantly associated with increased depressive symptoms. Being a part-timer or financially prosperous was associated with good mental health. Conclusions: To support family caregivers, it is essential to reduce the burden of long-term care and provide financial help and an environment where they interact with their peers, and their moods can be enhanced.

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Young carers and ALS/MND: exploratory data from families in South Africa

Background: Amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) remains under-resourced across much of the world, including the global south. The lack of supports for ALS/MND is underscored, given the barriers to care, stigma associated, and need for intensive, 24-hour care, primarily provided by family, including vulnerable children and youth, 'young carers'. With little information of the care experience in ALS/MND in South Africa, this study sought to explore family characteristics and identify caregiving experiences and need of young carers in families living with ALS/MND. Methods: Using an exploratory mixed-methods approach, participants (N = 40) from 20 familes, were recruited from the two ALS/MND clinics in Cape Town and Johannesburg areas. Separate audiotaped interviews with adults living with ALS, adult caregivers and young carers were conducted. Findings: Young carers, both genders, ages 9–19, provided care up to 50 or more hours per week, including administering medications, toileting, and feeding the person with ALS/MND, with the majority reporting no training. Stigma, fear and lack of knowledge about ALS/MND limited how families discussed both ALS/MND and care provided by young carers. Families highlighted transportation barriers, and inconsistent access to care across regions. Parents identified emotional support, and in-home help to alleviate the burden of care on youth, acknowledging reliance on young carers due to cost of care. Young carers identified the need for education and people their age to talk to about ALS/MND. Conclusions: Results highlight the complex needs and interaction among families living with ALS/MND in South Africa. Data support the development of targeted support and education programs to address the need for culturally relevant interventions for families and their young carers living with ALS/MND. 

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The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background

Background: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. Methods: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach’s alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. Results: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach’s alpha: 0.94). The CFA indicated that the factor ‘Self-perceived Pressure from Informal Care’ explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). Conclusions: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

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Translation, cultural adaptation and validation of the Chinese version of the Carer Support Needs Assessment Tool for family caregivers of cancer patients receiving home-based hospice care

Background: Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT). Methods: Cross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff. A cross-sectional survey of 205 family caregivers was conducted from December 2018 to May 2019 at a home-based hospice care institute in Shenzhen, China. The validation procedure comprised the establishment of (1) content validity by a group of six experts; (2) face validity by 15 family caregivers; (3) criterion validity by calculating Spearman’s correlations between the CSNAT and caregiving burden, caregiving preparedness and quality of life scales; (4) internal consistency using Cronbach’s alpha. Results: The CSNAT demonstrated good face validity and good content validity. CSNAT scores showed clear positive correlations with caregiving burden and negative correlations with preparedness for caregiving and quality of life. Internal consistency was high (Cronbach’s alpha = 0.899), although such reliability testing is not recommended for this tool. Conclusions: The Chinese version of the CSNAT is a valid tool that is appropriate for identifying needs of family caregivers of cancer patients in home-based hospice care.

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Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain-Portugal cross-border

Background: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area. Method: The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS-Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson's correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach's alpha. Results: The domain structure of the FQOLS-ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). Conclusion: The FQOLS-ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain-Portugal cross-border area. 

 

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Trajectories of Informal Caregiving to the Oldest-old: A One-year Follow-up Study

Objectives: This study aimed to analyze caregivers and care recipients’ health characteristics and caregiving context changes during a one-year follow-up. Methods: A total of 204 informal caregivers and oldest-old care recipients ( ≥ 80 years) were assessed on two occasions, 12 months apart. Information was retrieved on the dyad’s sociodemographic profile, caregiver’s health/caregiving outcomes, care recipients’ dependency level, and caregiving context. Descriptive analysis was performed for all variables and comparisons between the two moments using paired t tests or McNemar tests. Results: Caregiving hours, caregiver burden, and negative aspects of caregiving got significantly worse over one year. The number of unmet needs, in-home services utilization, and self-perception of mental health improved. Care recipients declined in their functional and health status and on their cognitive performance. Conclusions: This study provides information about caregiving trajectory changes over one year and stresses a probable caregiver adaptation even when facing increasing caregiving demands.

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Towards a middle-range theory of ‘Stability of home-based care arrangements for people living with dementia’ (SoCA-Dem): findings from a meta-study on mixed research

Background: Most people with dementia and their informal carers live at home and strive to create a stable care situation for as long as possible. This preference of dyads is consistent with the global policy of ageing in place. Therefore, we aimed to develop a middle-range theory of stability guided by two research questions: How is stability of home-based care arrangements for people living with dementia constituted? What are the essential factors influencing stability? Methods: Within the 'Stability of home-based care arrangements for people living with dementia' project (SoCA project) at the German Center for Neurodegenerative Diseases (DZNE), we conducted a meta-study on mixed research. The analytical steps of meta-data analysis, meta-method and meta-theory are merged in an integrative synthesis. Eligible publications were identified through systematic database searches (MEDLINE, CINAHL and PsycINFO; last searched on 3 January 2017), backward/forward citation tracking and snowballing. All publications were screened against predefined inclusion criteria and evaluated through a quality appraisal. The analytical approach was thematic synthesis. Results: 99 publications were included. The middle-range theory conceptualises stability as a complex phenomenon comprising three components including eight concepts that are dynamically inter-related. The conceptual model visualises: (1) the trajectory of the dementia care arrangement, which involves a cyclic process of change and balancing over time; (2) the characteristics of the care arrangement, including needs, the carer role, the dyadic relationship and resources; and (3) the context, which is determined by society and culture and the respective healthcare system. The relevance of each concept in relation to stability changes over time. The forming of each concept is actively shaped by the informal carer. Discussion: This middle-range theory provides a thorough understanding of the stability of home-based care arrangements for people living with dementia and can be used to guide future research and practice. This meta-study was funded by the DZNE and registered in PROSPERO (registration number CRD42016041727).

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Supporting family carers of people with dementia: A discrete choice experiment of public preferences

Background: Community-based care for people with dementia is mainly provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Many countries are now implementing ageing-in-place policies that have increased pressure on family carers as care-work is redistributed from residential to community-based settings. Family caring responsibilities for people with dementia are made even more complicated by the economic, social and cultural expectations that underpin existing provision. Support for family carers is, therefore, an important policy topic across many countries. Objectives: The focus of this paper is on the propensity of citizens to support enhanced care for family carers in Ireland, as demonstrated by their willingness-to-pay additional taxation to fund different combinations of carer support measures, developed through careful and sustained dialogue with multiple stakeholders, especially family carers themselves. Methods: We carried out a discrete choice experiment (DCE) with 509 members of the general public in Ireland between January and February 2021. Results: Using mixed logit models, our findings show that citizens value four key attributes: regular caring breaks for family carers (day-care and long-break respite); financial compensation (carer's allowance); and emotional support (carer peer support groups). We also estimated the welfare impact of moving from current provision to enhanced support packages for family carers of people with dementia. The welfare gains accumulate to €1035.80 for the most complete levels of provision across the four support attributes. Conclusions: Overall, respondents in this paper showed empathy and understanding towards family carers of people with dementia through their willingness to contribute to funding additional services and supports. 

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Support Intervention for Families and Caregivers of Palliative Care Patients (QI701)

Objectives: 1. Develop a streamlined, routine psychosocial spiritual assessment among families and caregivers of palliative care patients. 2. Develop streamlined, routine psychosocial spiritual needs intervention among families and caregivers of palliative care patients. Background: Complicated grief is intense, debilitating grief for more than six months after loss and is predicted by pre-loss depressive symptoms and unmet psychosocial needs. Per the Clinical Practice Guidelines for Quality Palliative Care, families are at risk and their psychosocial-spiritual needs should be met to improve outcomes. Aim Statement: This initiative aims to develop a streamlined, routine psychosocial spiritual assessment and intervention of families and caregivers' needs to enhance support. Methods: A validated, confidential, 13-question tool (The American Academy of Hospice and Palliative Medicine's Chart Abstraction Checklist-Psychosocial Spiritual Assessment, edited with permission) was used to assess families of inpatient palliative care patients (n=46) over a three-month period. Identified needs were appropriately referred to a social worker, chaplain, or care manager. These assessments measured the number of needs identified and relationships among needs (p<0.05 is statistically significant). Results: Of those assessed, 97.8 percent had a need that required follow-up. A moderately significant relationship was established between those who felt they were coping well and those who reported the perception of a good support system (X2 =6.893, p=.009, Cramer's V of .387). Conclusions and Implications: Performing routine assessments resulted in a significant identification of unmet needs. Those who have greater perceived support reported coping well. Routine psychosocial spiritual assessments and appropriate interventions on caregivers should be continued with a focus on those who have a lack of a support system.

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Support groups for family caregivers of persons with dementia in India

Background: A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. Objective: The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. Findings: The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. Conclusion: The study found that support groups fulfil an important need for caregivers by providing information and peer support.

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Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review

Background: An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Methods: Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. Findings: The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. Conclusions: There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

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Study of physical, psychological, and spiritual impact of family caregiver in home-based stroke treatment: A systematic review

Background: Family support during stroke treatment at home is crucial. However, post-stroke patients’ long-term care will be a problem for families, reducing the level of life satisfaction and physical burden for caregivers. Furthermore, families may experience depression. AIM: Analyzing family conditions related to physical, psychological, and spiritual conditions that receive home-based health worker interventions. Methods: Study implemented systematic review design with Prisma guidelines, initially with the identification of article sources, following by article screening, checking the eligibility of studies then appraised the selected articles. Three databases were used, Ebsco, PubMed, and PROQUEST. Only studies using quasi-experimental, pre-experimental, and RCT designs were included in this study. Furthermore, those articles were published between 2014 until 2019, full type article and conducted anykind of home intervention for stroke patients and/or family member. Keywords that were employed “Stroke, Apoplexy, Cerebrovascular Accident, Vascular Accident, Home Care Services, home care, Home Health Care, Domiciliary Care, Physical, Physics, Psychological Factors, Psychological Side Effects, Psychosocial Factors, Spirituality.” Totally, 19,528 articles were obtained. Finally, only six eligible articles met review requirements. Results: Implementation of home-based care lowered the physical fatigue of the family. In psychological responses showed that home-based care could reduce the incidence of depression and anxiety levels. Another impact was that the family felt helped because patients could more independently do their activities. Furthermore, the family always supported to motivate the patients to do their daily tasks. Conclusion: Home-based interventions for stroke patients can reduce depression, anxiety, and fatigue for the family caregiver. 

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Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities

Introduction: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. Methods: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. Results: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. Conclusion: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies. 

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Spouse and Adult-Child Dementia Caregivers in Chinese American Families: Who Are More Stressed Out?

Background: Though many studies have explored differences between spouses and adult children in dementia care, empirical evidence is lacking on racial- and ethnic-minority populations. Methods: To fill this research gap, this study examined care tasks, caregiver burden, and depressive symptoms of Chinese spouse and adult-child caregivers in dementia care. Guided by the stress process model, this study asked 3 questions: Do spouse and adult-child caregivers take up different care tasks and experience different levels of caregiver burden and depressive symptoms? Does gender moderate the differences between spouse and adult-child caregivers? Whether care tasks and burden mediate the association between being a spouse/adult-child caregiver and depressive symptoms? Data were collected from a questionnaire-based survey of Chinese Americans who provided care for their family members with dementia in New York City. The analytical sample included 126 Chinese spouse or adult-child caregivers. Care tasks was indicated by intensity of 8 types of care tasks. Caregiver burden and depressive symptoms were measured by Zarit's Burden Interview and the 10-item Center for Epidemiologic Studies Depression Scale. Linear regression, interaction term (spouse/adult-child caregiver by gender), and path analysis were conducted to address the 3 questions. Results: The results of linear regression show no significant difference in care tasks between the 2 groups, but spouse caregivers had significantly higher levels of caregiver burden and depressive symptoms than adult children. Wives had higher levels of caregiver burden and depressive symptoms than husbands, daughters, and sons. Caregiver burden mediated the association between being a spouse caregiver and higher depressive symptoms, whereas care tasks did not shape such association. Conclusions: This study highlighted the emotional stress of Chinese American older adults in providing care for their spouses. The findings indicate the necessity of developing culturally meaningful activities to support Chinese American spouse caregivers.

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Sociodemographic aspects and health care-related outcomes: a latent class analysis of informal dementia care dyads

Background: Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes. Methods: We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements. Results: Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p < 0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as “adult child parent relationship & younger informal caregiver”, “adult child parent relationship & middle aged informal caregiver”, “non family relationship & younger informal caregiver”, “couple & male informal caregiver of older age”, “couple & female informal caregiver of older age”, “couple & younger informal caregiver”. The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes. Conclusion: Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers.

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Sociodemographic and clinical variables related to the overburden of the informal caregivers of patients hospitalized for chronic obstructive pulmonary disease exacerbations

Objective: To increase our knowledge of the patient variables related to the overburden of the caregivers of patients with acute exacerbations of chronic obstructive pulmonary disease (AECOPDs). Methodology: This was a cross-sectional study of patients with severe COPD who have informal caregivers. We performed a multivariate analysis of sociodemographic (economic situation, care, dependence, social risk, and use of social services) and clinical (degree of dyspnea, previous hospitalizations, disease impact, pulmonary function, and comorbidity) factors and related these to the burden of informal caregivers, as evaluated using the Zarit scale. Results: The study included 91 patients, age 72.6±8.7 years and 80 were male (89.7%); the mean modified Medical Research Council dyspnea scale (mMRC) score was 2.5±0.8; mean FEV1 was 39.5 ± 13.2%; and 70 patients (76.9%) were dependent for basic activities. Of the informal caregivers, 90 (90.9%) were women, 49 (49.4%) were partners or spouses, and 29 (29.6%) were daughters. The mean Zarit questionnaire score was 51.4±14.2, with 63 of carers (69.2%) perceiving some overburden, and 34 (37.4%) describing the overburden as mild–moderate. The variables related to informal caregiver overburden in the multivariate study were the previous use of social resources [OR = 8.1 (95% CI = 1.03–69.9); p = 0.04], degree of mMRC dyspnea 3–4 [OR =4.7 (95% CI = 1.7–13.2); p = 0.003], and two or more admissions for AEPOC in the previous year [OR = 4.5 (95% CI = 1.7–13.2); p = 0.003]. Of the informal caregivers of patients who had presented two or more of these variables, 92.3% perceived an overburden. Conclusion: The variables associated with overburden are easily accessible in patient medical records, or can be obtained by interviewing patients or their relatives. This informa-tion would allow to detect and assess the overburden of informal caregivers to provide an early warning of this problem. © 2021 Fernández-García et al.

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Sociocultural Influences on the Feeling of Loneliness of Family Caregivers of People with Dementia: The Role of Kinship

Background: The extent to which familism, dysfunctional thoughts, and coping variables contribute to explaining feelings of loneliness in caregivers, controlling for kinship, is analyzed. Methods: Participants were 273 family caregivers of people with dementia. Sociodemographic variables, familism, dysfunctional thoughts, coping strategies for requesting and receiving help, perceived social support, and leisure activities were assessed. The fit of a theoretical model for explaining the effect of cultural and psychological variables on feelings of loneliness in each kinship group was tested. Results: No significant differences in the distribution of loneliness by kinship were found. Higher levels of familism are associated with more dysfunctional thoughts, that are linked to more maladaptive strategies for coping with caring (e.g., less social support and fewer leisure activities). This in turn is associated with higher scores in the feeling of loneliness. The model bore particular relevance to the group of daughters, husbands, and sons, yet not in the case of wives. Conclusions: Sociocultural and coping factors associated with the caring process seem to play an important role in explaining feelings of loneliness in caregivers. Sociocultural factors associated with the care process seem to play an important role in explaining feelings of loneliness in caregivers.

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Societal perceptions of caregivers linked to culture across 20 countries: Evidence from a 10-billion-word database

Background: Caregivers play an indispensable role in society. In 2017, 41 million family caregivers in the United States provided approximately 34 billion hours of care to their aging parents, spouses, partners and friends. The estimated economic value of their unpaid contributions amounted to $470 billion. Despite their invaluable contributions, caregivers often operate in a reality of inadequate social support. Little is known about the factors linked to the societal perceptions of caregivers, and our study seeks to contribute by filling this gap. Importantly, whether society honors or stigmatizes caregivers is critical as it could impact caregiving decisions and either exacerbate or ameliorate caregiver burden. Methods: We leveraged an online media database of 10 billion words collated from over 28 million articles, across 20 countries, to analyze societal perceptions of caregivers. Results: Of the 20 countries, 18 evidenced neutral to positive perceptions of caregivers. Bangladesh and Ghana had the most positive perceptions, while Sri Lanka and Tanzania had the most negative perceptions. Aging demographics and culture (individualism, masculinity and uncertainty avoidance) were significantly associated with perceptions of caregivers. Conclusions: Findings suggest that positive perceptions of caregivers can be better cultivated when caring is lauded as a virtuous act that aids in reducing the care deficit. This study is among the first to analyze the societal perceptions of caregivers globally, and lays the groundwork to design culturally sensitive interventions that increase society’s appreciation for caregivers.

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The Socialization of Unpaid Family Caregivers: A Scoping Review

Background: As unpaid family caregiving of older adults becomes increasingly prevalent, it is imperative to understand how family caregivers are socialized and how they understand the caregiving role. Methods: This PRISMA-ScR-based scoping review examines the published literature between 1995–2019 on the socialization of potential and current unpaid family caregivers of older adults. Results: Of 4,599 publications identified, 47 were included. Three perspectives of socialization were identified: (1) role acculturation ; (2) role negotiation and identification ; and (3) specialized role learning. The findings show how socialization involves different contexts (e.g., cultures), imperatives for action (e.g., circumstances), socialization agents (e.g., family), processes (e.g., modeling), and internal (e.g., normalization) and external (e.g., identification) consequences for caregivers. Conclusions: Future research could fruitfully explore how caregivers manage key turning points within the socialization process, disengage from the caregiving role, and negotiate the socialization and individualization processes within diverse cultural and funding contexts.

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Social support and quality of life among rural family caregivers of persons with severe mental illness in Sichuan Province, China: mediating roles of care burden and loneliness

Objective: To explore the relationship between social support and quality of life (QoL) among family caregivers of persons with severe mental illness (SMI) and examine the mediating roles of care burden and loneliness. Methods: A cross-sectional study was carried out between December 2017 and May 2018. A random sample of 256 family caregivers of persons with SMI in rural areas of Sichuan Province, China was recruited for participation. Survey data on socio-demographics, social support, care burden, loneliness, and QoL were collected via in-person interviews. Multiple linear regression analysis and structural equation modeling (SEM) were used to test the hypothesized relationships. Results: The majority (72.7%) of family caregivers of persons with SMI in this study reported having low QoL. Social support was positively associated with QoL and negatively associated with care burden and loneliness. The findings suggested the mediating roles of care burden and loneliness on the association between social support and QoL. Conclusion: The hypothesized model was found to be a suitable model for predicting QoL among family caregivers of persons with SMI. The findings can help inform the design of future interventions aimed at enhancing social support, reducing care burden and loneliness, which may be helpful to improve caregivers' QoL. Future study is required to find a causal path to promote QoL among family caregivers of persons with SMI. 

 

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Social Support and Family Functioning in Chinese Families of Children with Autism Spectrum Disorder

Background: Families caring for children with autism spectrum disorder (ASD) have reported poorer family functioning. Social support might strengthen family functioning, but limited research to date has focused on this association in China. Methods: This study conducted a cross-sectional survey of Chinese families that have children with ASD to examine the relationship between social support and family functioning. Caregivers of children with ASD from Sichuan province in China (N = 167) were surveyed concerning their perceived social support and family functioning. The Social Support Rating Scale was used to investigate caregivers’ perceived social support from three dimensions: subjective support, objective support, and the utilization of support. A Chinese version of the Family Adaptability and Cohesion Scale was used to investigate their perceptions of family cohesion and adaptability. The Pearson correlation coefficient and stepwise multiple regression were used for analyses. Results: The results suggested that social support was positively related to family cohesion and adaptability. Of the three sub-domains of social support, both subjective support and the utilization of support were positively associated with family cohesion and adaptability. Conclusion: The study’s findings evidenced the importance of different types of social support and could be used to develop a targeted support service for families that have children with ASD to improve their family functioning and sustain the family unit.

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Social Isolation Among Spousal and Adult-Child Caregivers: Findings From the Canadian Longitudinal Study on Aging

Objectives: The caregiving outcomes of spousal and adult-child caregivers are widely studied since they are the most common source of support provided to adults. However, the literature on social isolation among spousal and adult-child caregivers is very limited. In order to further elaborate and specify unique caregiving outcomes, this study focuses on social isolation, both longitudinally and comparatively between spousal and adult-child caregivers. Methods: This study was based on the Baseline and Follow-up 1 data from the Canadian Longitudinal Study on Aging. A total of 5,226 participants (1,293 spousal caregivers and 3,933 adult-child caregivers) were selected. The Linear mixed models were used to examine the effect of caregiver type and caregiving intensity on social isolation over the course of survey. Results: Spousal and adult-child caregivers reported greater social isolation over time, and spousal caregivers exhibited a steeper increase in social isolation from Baseline to Follow-up 1 than adult-child caregivers. Also, an increase in caregiving hours resulted in greater social isolation. Finally, male spousal or adult-child caregivers were more likely to be socially isolated over time than their female counterparts. Discussion: The findings of this study contribute to the existing literature on caregiving outcomes by demonstrating an association between family caregiving and social isolation. The results indicate a strong need for intervention programs that aim to enhance social connectedness among family caregivers, and especially for those who perform intensive caregiving, are older age, and are from a lower socioeconomic status.

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Social Interactions between Family and Community-Based Service Providers in Dementia Caregiving

Objectives: This study aimed to evaluate the psychosocial experiences in community-based dementia caregiving by assessing the characteristics of social interactions between family caregivers and community-based service providers and associated psychological responses. Methods: Two independent groups of participants (family caregivers and community-based service providers) completed a one-time survey to report their social interactions and psychological states. A linear regression model was fit for each outcome (satisfaction, 10-item CES-D) while controlling for significant relevant covariates. Results: Higher perceived levels of collaboration were associated with higher job satisfaction and lower depression score among service providers, and higher satisfaction with providers among family caregivers. Higher perceived social support from the provider was associated with higher satisfaction among family caregivers. Conclusions: Participants reported varying levels of provider-family collaboration. The extent of collaborations and support exchange may have implications on the psychological well-being of those providing care to individuals with dementia including families and providers. Clinical implications: It may be beneficial to identify providers and families who perceive low levels of collaboration and implement intervention to facilitate positive social interactions. Developing organizational culture and payment systems that value high-quality social interactions may help enhance the psychological well-being of service providers and satisfaction among families who receive their services. 

 

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Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying.

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Self-reported changes in physical activity, sedentary behavior, and screen time among informal caregivers during the COVID-19 pandemic

Background: Informal caregivers providing unpaid assistance may be vulnerable to changes in health behaviors due to modifications in caregiving during the COVID-19 pandemic. Therefore, this cross-sectional study explored self-reported changes in physical activity (PA), sedentary behavior, and screen time among informal caregivers providing care for older adults aged 50+ during the pandemic. Methods: Study participants were recruited via Amazon’s Mechanical Turk and reported their perceived changes (increased a lot, increased a little, remained the same, decreased a little, decreased a lot) in moderate-intensity PA (MPA), vigorous-intensity PA (VPA), sedentary behavior, and screen time (weekday and weekend) during the pandemic. For analytic purposes, response categories were categorized into three-level ordinal variables—increased (increased a lot, increased a little), no change (remained the same), decreased (decreased a little, decreased a lot). Multinomial logistic regression models assessed the likelihood of changes (vs. no change) in MPA, VPA, sedentary behavior, and screen time (weekday, weekend) based on caregiving and demographic characteristics. Results: In total, 2574 individuals accessed the study link, 464 of whom did not meet eligibility requirements. In addition, people who completed 80% or less of the survey (n = 1171) and/or duplicate IP addresse (n = 104) were excluded, resulting in an analytic sample of n = 835. The sample was 69% male, had a mean age of 34 (SD = 9.7), and 48% reported increased VPA, while 55% reported increased MPA. The majority also reported increased sedentary behavior, as well as increased screen time. Respondents living with their care recipient were more likely to report increased weekday screen time (Odds Ratio [OR] = 1.55, 95% CI 1.11–2.16) and sedentary behavior (OR = 1.80, 95% CI 1.28–2.53) than respondents not living with the care recipient. Those living with their care recipient were also more likely to reported increased MPA (OR = 1.64, 95% CI 1.16–2.32), and VPA (OR = 1.53, 95% CI 1.09–2.15), but also more likely to report a decrease in VPA (OR = 1.75, 95% CI 1.14–2.70). Conclusion The majority of respondents reported that their MPA, VPA PA, sedentary behavior, and screen time had changed during the pandemic. Living with the care recipient was associated with both positive and negative changes in behavior. Conclusions: Future research can explore factors associated with these reported changes in behavior.

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Self‐care experiences of Pakistani patients with COPD and the role of family in self‐care: A phenomenological inquiry

Background: Self‐care enables patients in improving quality of life and reducing hospital admissions. Research explored the experiences of patients about breathlessness, sleep problems and complication management in chronic obstructive pulmonary disease (COPD). However, the self‐care experiences and the role of the family in self‐care are underexplored. Objectives: This study aimed to understand the self‐care experiences of patients with COPD and explore the role of the family in self‐care. Methods: An interpretive phenomenological inquiry was used, and 13 patients were interviewed in 2019 from two hospitals in Pakistan. The inclusion criteria were patients above 30 years of age at any stage of COPD, who received a confirmed diagnosis of COPD and were receiving the treatment, and engaged in self‐care at their homes or communities. The interviews lasted for 35–60 min. Ricoeur's interpretation theory was used for data analysis comprising steps explanation, naive understanding and in‐depth understanding. Results: Self‐care emerged as a complex individual and familial endeavour affected by personal, social and economic factors. Poverty was one of the core determinants of self‐care. Patients emphasised the spiritual, cultural and traditional approaches to self‐care. Conclusions: Future research is warranted to develop better understanding of spiritual and cultural self‐care and how these dimensions of self‐care affect patients' self‐care behaviours.

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Rural-Urban Differences in Caregiver Burden Due to the COVID-19 Pandemic among a National Sample of Informal Caregivers

Objectives: The objective of this exploratory study was to explore potential associations between changes to caregiver burden (CB) due to the COVID-19 pandemic and rural-urban status using a nationally representative sample of 761 informal caregivers. Methods: Tertiles of two measures of rural-urban status were used: Rural-Urban Commuting Areas (RUCAs) and population density. Bivariate and multivariable binary and ordinal logistic regression were used to asses study objectives. Results: Using RUCAs, rural informal caregivers were more than twice as likely as urban informal caregivers to report a substantial increase in CB due to COVID-19 (OR 2.27, 95% CI [1.28–4.02]). Similar results were observed for population density tertiles (OR 2.20, 95% CI [1.22–3.96]). Having a COVID-19 diagnosis was also significantly associated with increased CB. Conclusions: Understanding and addressing the root causes of rural-urban disparities in CB among informal caregivers is critical to improving caregiver health and maintaining this critical component of the healthcare system. 

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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).

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Relationship between social cohesion and the care burden of primary family caregivers in central Tokyo, Japan

Objectives: To clarify how the care burden of primary family caregivers is associated with social cohesion in an urban area of Tokyo, Japan.Study designCross‐sectional study. Methods: A questionnaire survey of primary family caregivers was conducted in Tokyo in 2015. Social cohesion was examined using the social capital indicators of Kondo et al, and the care burden of primary family caregivers was assessed by the Zarit Care Burden Interview Scale in Japanese short version (J‐ZBI_8). Data were analyzed by multiple regression models. Ethics approval was obtained to carry out this research. Results: Seventy‐nine caregivers responded to the questionnaires. After excluding 6 caregivers who did not respond appropriately to the questionnaire, 73 caregivers were included in the analyses. The average age of the primary family caregivers was 68.9 ± 12.7 years old, and that of the patients receiving care was 83.1 ± 10.0 years old. “Receipt of instrumental support” was significantly associated with reduced burden of care for family caregivers as assessed by the J‐ZBI_8 score (P = .027). Conclusion: This study suggested that social cohesion was significantly associated with reduced burden of care for primary family caregivers. Especially, the results suggested that “social support: receipt of instrumental support” was associated with a lower burden of care after adjustment for confounding factors. It is important to understand family structure and social community differences such as informal social support for future policy making.

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Relationship Between Quality of Life of Children With Cancer and Caregiving Competence of Main Family Caregivers

Objective: The purpose of this study was to describe the caregiver's proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver's competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. Method: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). Results: The mean of the children's QoL was 102.0 points, and the caregivers' competence score was 211.24. Caregiver's competence (t = 5.814, p <.01), marital status (t = 1.925, p <.05), time as a caregiver (t = 2.087, p <.05), number of hours spent caring for the child (t = 2.621, p <.05), and caregiver's previous caring experiences (t = 2.068, p <.05) were found to influence caregiver's proxy-report of the QoL of children with cancer. Conclusions: High competence in main family caregivers positively influence caregiver's proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers' sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver's previous experiences because those aspects influence main family caregivers' proxy-report about their children's QoL.

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Reciprocity between older adults and their care-givers in emigrant households of Kerala, India

Background: The felt obligation to return a benefit, termed reciprocity, has been identified as motivating care exchanges between older adults and their younger family members. Within the context of large-scale emigration of young adults from the Indian state of Kerala, this study examines how left-behind older adults and their family care-givers recognise, interpret and give meaning to reciprocal exchanges, expectations and obligations in their care relationship. Methods: Employing a social exchange perspective, we qualitatively explore the norm of reciprocity through in-depth interviews of 48 participants (older adults and their care-givers) from emigrant households. Findings: Older adults and their care-givers identified reciprocal notions in their care exchange relationship that provided an interpretive framework for describing expectations, motivations, obligations and experiences across care-giving relationships. Spousal care-givers derived reciprocal motives and mutual care obligations through the institution of marriage. Adult children recognised filial duties and responsibilities and were in principle prepared to provide care to their parents. Reciprocating the support received and the likelihood of intergenerational transfers motivated care exchanges from adult children to their older parents. Daughters-in-law executed transferred filial roles from their emigrant husbands and bore a larger burden of care. Primary adult care-givers relied on the 'demonstration effect', hoping that children observe the care-giving process and emulate it later. Conclusions: Imbalances and non-reciprocity in the care exchange led to frustrations and threatened the care relationships.

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A randomized controlled trial evaluating the effects of a family-centered HIV care model on viral suppression and retention in care of HIV-positive children in Eswatini

Introduction: A family-centered care model (FCCM) providing family-based HIV services, rather than separate adult/pediatric services, has been proposed to increase pediatric retention and treatment adherence. Materials and methods: Eight health-care facilities in the Hhohho region of Eswatini were randomized to implement FCCM (n = 4) or continue standard-of-care (SOC) separate adult/pediatric clinics (n = 4). HIV-positive children and caregivers were enrolled; caregiver interview and child/caregiver chart abstraction were done at enrollment and every three months; pediatric viral load was evaluated at enrollment and every six months through 12 months. Because of study group differences in 12-month viral load data availability (89.4% FCCM and 72.0% SOC children had 12-month viral load), we used three separate analyses to evaluate the effects of FCCM on children's viral suppression (<1,000 copies/mL) and undetectable virus (<400 copies/mL) at 12 months. In the first analysis, all children with missing viral outcome data were excluded from the analysis (modified intent to treat, mITT). The second analysis used inverse probability of missingness weighted logistic regression to estimate the effect of FCCM on 12-month viral outcomes compared to SOC (weighted mITT). For the third approach, missing virologic outcome data were imputed as virologic failure (imputed ITT). We also examined factors associated with viral suppression at 12 months using multivariable logistic regression. Results: We enrolled 379 HIV-positive children and 363 caregivers. Among all children at enrollment, viral suppression and undetectability was 78.4% and 73.9%, respectively, improving to 90.2% and 87.3% at 12 months. In mITT and weighted mITT analyses, there was no significant difference in children's 12-month viral suppression between FCCM and SOC groups (89.2% and 91.6%, respectively). Using imputed ITT, there was a modest increase in 12-month viral suppression in FCCM versus SOC children (79.7% and 69.8%, respectively, p = 0.051) and 12-month undetectability (78.7% and 65.7%, respectively, p = 0.015). Among the 255 children suppressed at enrollment, more FCCM versus SOC children (98.0% versus 95.3%) were suppressed at 12-months, but this was not statistically significant in mITT or weighted mITT analyses, with a marginally significant difference using imputed mITT analysis (p = 0.042). A higher proportion of children suppressed at enrollment had undetectable viral load at 12 months in FCCM versus SOC children (98.0% versus 92.5%), a statistically significant difference across analytical methods. Among the 61 children unsuppressed at enrollment, achieving suppression was higher among SOC versus FCCM children, but this difference was not statistically significant and included only 38 children; and there were no significant differences in detectable viral load at 12 months. There were no significant differences between study groups in retention or ART adherence at 12 months for children or caregivers. Factors associated with lack of viral suppression/detectability at 12 months included lack of viral suppression at enrollment and having a younger caregiver (age <25 years). Conclusions: FCCM in Eswatini was associated with a modest increase in viral suppression/undetectability at 12-months; 12-month retention and adherence did not differ by study group for children or caregivers. High levels of suppression and retention in both groups may have limited our ability to detect a difference. Trial registration: NCT03397420; ClinicalTrials.gov. 

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Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China. Methods: We recruited 101 children aged 0–17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups. Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, stable course of disease, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05). Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

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Quality of life and associated factors among adults living with cancer and their family caregivers

Background: This study examined the association of needs, health literacy, and quality of life among adult Nigerians with cancer and family caregivers. Methods: A descriptive study was conducted involving 240 adults with cancer and family caregivers attending a tertiary hospital. More than two‐thirds of participants reported moderate or high needs. Results: Information (90.8%) and spiritual support (85%) were the domains of highest need among adults with cancer. Family/social support (85%) and spiritual support (81.7%) ranked the highest among family caregivers. A negative correlation was found between needs and quality of life. Stepwise regression analysis showed that needs and literacy explained 36% of the variance in adults with cancer's quality of life and 28% of the variance in family caregivers’ quality of life. Spiritual need accounted l for 9.5% and 9.1% of variation for adults with cancer and family caregivers, respectively. Conclusions: Findings suggest that interventions with a focus on social/family and spiritual needs may improve wellbeing of adults with cancer and caregivers in Nigeria. This research are generalizable to other low‐income countries where family values and spirituality are often a strong feature of daily life.

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Quality of life among caregivers of children with epilepsy: A cross‐sectional study at Eastern Nepal

Objective: To assess the quality of life among caregivers of children with epilepsy in a tertiary care center of eastern Nepal. Methods: A cross‐sectional study was conducted among primary caregivers of children with epilepsy, who accompanied their child in child neurology clinic. Consecutive sampling was done, and 106 respondents were interviewed. Data were collected using World Health Organization Quality of Life‐BREF (WHOQOL‐BREF) scale and analyzed using Statistical Package for the Social Sciences. Descriptive and Inferential statistics were applied. Results: Mean WHOQOL‐BREF score was 82.25 {standard deviation (SD) ±12. 11}. Transformed scores (0‐100) for each domain were 57.98 ± 14.55 in physical, 55.87 ± 13.16 in psychological, 53.12 ± 13.42 in social, and 52.52 ± 13.04 in environmental domain. Mean score for overall perception of quality of life (QOL) was 2.71 ± 0.79 and was 3.12 ± 0.75 for overall perception of health. Living below poverty line (P = .03) and poor seizure control status of children (P = .46) were significantly associated with lower total QOL score. Living below poverty line was significantly associated with low social relationship (P = .003) and environment domain (<0.001) scores. Conclusions: Epilepsy has a multifaceted impact on the lives of affected people. Caring children with epilepsy is associated with enormous psychosocial effects on parents and family members. Caregivers' QOL may affect the treatment and outcome of epilepsy in children. Given the consideration to scarcity of this kind of literature in Nepalese context, this study was conducted.

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A qualitative study on the needs of cancer caregivers in Vietnam

Background: Vietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer. Objectives: This study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam. Methods: Focus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam. Results: Analysis demonstrated that the burden of informal care is high with many caregivers managing patient’s severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases. Conclusions: Caregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam. 

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Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results: Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions: This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

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A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

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Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study

Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. Objectives: The objective of this study was to identify the sociodemographic and psychosocial factors that predict resilience in family caregivers of children with cancer and to define whether there are differences in the levels of resilience derived from these sociodemographic variables. Methods: Three hundred and thirty family caregivers of children with cancer, with an average age of 32.6 years were interviewed. The caregivers responded to a battery of tests that included a questionnaire of sociodemographic variables, the Measuring Scale of Resilience, the Beck Depression Inventory, the Inventory of Quality of Life, the Beck Anxiety Inventory, an interview of caregiver burden and the World Health Organization Well-Being Index. Results: The main findings indicate that family caregivers of children with cancer reported high levels of resilience, which were associated positively with quality of life, psychological well-being and years of study and associated negatively with depression, anxiety and caregiver burden. The variables that predicted resilience in families of children with cancer were quality of life, psychological well-being, depression and number of children. Family caregivers who were married and Catholic showed higher resilience scores. We conclude that being a caregiver in a family with children with cancer is associated with symptoms of anxiety and with depressive episodes. Conclusions: These issues can be overcome through family strength, well-being, quality of life and positive adaptation processes and mobilization of family resources.

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Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. Results: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33–44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. Conclusion: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.

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Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study

Background: Psychosocial adjustment to a complex and disabling long‐term condition like Parkinson´s disease is a complex, dynamic, cyclical and interactive process. Family caregivers, face multiple challenges that require a significant effort in terms of psychosocial adjustment, which must be considered by healthcare professionals in order to provide a holistic care. The patients’ self‐report version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR), which has been validated in Spain for use in Parkinson's disease, is designed to evaluate the psychosocial adjustment of patients. Objectives: Our purpose was to validate the Spanish PAIS‐SR version for caregivers of patients with Parkinson's disease. Methods: An open, national cross‐sectional study with one point‐in‐time evaluation and retest was carried out in 450 family caregivers of patients with Parkinson's disease. Data were collected in Spain from April 2016 to September 2017. Results: The psychometric analysis performed showed that the Spanish version of the PAIS‐SR for caregivers presents adequate indicators of reliability, internal and external validity, and is structured according to the seven‐domain model proposed by the author of the instrument.

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Psychometric properties of the turkish version of the revised scale for caregiving self-efficacy

Background: The self-efficacy of caregivers is an important matter that merits investigation, and this requires that the concept of self-efficacy be measured with a valid, reliable instrument. Materials and Methods: This research examined the psychometric properties of the Turkish version of the Revised Scale for Caregiving Self-Efficacy. A sociodemographic form and the Revised Scale for Caregiving Self-Efficacy were employed to collect data from April through December 2019. A total of 250 family caregivers were included in the study, which assessed the content validity, construct validity and reliability of the Revised Scale for Caregiving Self-Efficacy. Results: All 18 items had significant item-to-total correlations (p <0.05). The Cronbach’s alpha coefficient was 0.82 for the total scale, 0.76 for the self-efficacy in obtaining respite subscale, 0.82 for the self-efficacy in responding to disruptive patient behaviours subscale and 0.96 for the self-efficacy in controlling upsetting thoughts about caregiving subscale. Conclusion: The results of this study indicate that the Revised Scale for Caregiving Self-Efficacy is a valid, reliable measurement tool and suitable to the Turkish culture. 

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Psychometric Properties of the Multidimensional Scale of Perceived Social Support (MSPSS) Among Family Caregivers of People with Schizophrenia in China

Background: The Multidimensional Scale of Perceived Social Support (MSPSS) is one of the most widely used scales for social support. Although previous studies have shown good reliability and concurrent validity, conflicting evidence exists on its factor structures. Aim: To validate the MSPSS among caregivers of people with schizophrenia in China and assess its factor structure. Methods: A cross-sectional study was conducted of 449 family caregivers in 12 communities for psychometric testing, eg, internal consistency reliability, test–retest reliability, construct validity, exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Results: The MSPSS showed good internal consistency with a Cronbach’s alpha of 0.95, good test–retest reliability with intraclass correlation coefficient (ICC) of 0.91, and kappa ranging from 0.62 to 0.71. Concurrent validity was supported by its negative correlations with perceived stress, and significant positive correlations with caregiving rewarding feelings, family functioning, and coping. EFA yielded a two-factor structure (family vs non-family), while CFA generally supported a three-factor structure (family, friends, and significant others). Conclusion: Our findings show good psychometric properties of the MSPSS among caregivers of people with schizophrenia in China. EFA yields two-factor structure and CFA yields three factors consistent with the theory underlying the measure’s development.

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A psychometric evaluation of the Caregiver Contribution to Self-Care of Heart Failure Index in a Thai population

Background: Caregivers are major contributor to the self-care of patients with heart failure. The Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions across three scales: self-care maintenance (symptom monitoring and treatment adherence); self-care management (dealing with symptoms); and confidence in contributing to the self-care (self-efficacy in managing self-care) of patients with heart failure. Informal caregivers play a vital role in supporting family members with heart failure in Thailand, yet no validated tool exists to measure their contribution. We examined the psychometric properties of the CC-SCHFI in a Thai population. Methods: The CC-SCHFI was translated into Thai using a standard forward and backward translation procedure. A cross-sectional design was used to examine the psychometric properties of the Thai version of the CC-SCHFI in 100 family caregivers of heart failure patients in Southern Thailand. Confirmatory factor analysis was used to assess construct validity, and factor score determinacy coefficients were computed to evaluate internal consistency reliability. Results: The Thai version of the CC-SCHFI demonstrated acceptable internal consistency (composite reliability of each scale ranged from 0.76 to 0.99). Reliability estimates were adequate for each scale (McDonald’s omega ranged from 0.75 to 0.96). Confirmatory factor analysis supported the original factor structure of the instrument, with good fit indices for all three scales (comparative fit index = 0.98–1.00; root-mean-square error of approximation = 0.00–0.07). Conclusions: The Thai version of the CC-SCHFI appears to be a valid and reliable instrument for measuring caregiver contributions to self-care maintenance and self-care management as well as contributing to caregiver confidence in the self-care of Thai heart failure patients.

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Psychological distress and burden of care among family caregivers of patients with mental illness in a neuropsychiatric outpatient clinic in Nigeria

Background: The wellbeing of family caregivers of mentally ill persons has often been ignored, despite that family caregivers can be predisposed to psychiatric morbidities and burden in caring for their mentally ill family members. This study examined the levels of psychological distress and burden of care experienced by family caregivers who care for their mentally ill relatives in Edo State, Nigeria. Methods: This study assessed psychological distress using the General Health Questionnaire (GHQ-12). Burden of care was measured using the 22-item Zarit Burden Interview (ZBI) questionnaire. Multiple linear regression was done to determine factors associated with burden of care and psychological distress, while factor analysis was used to determine the underlying forms of burden of care and psychological distress among participants. Results: Caregivers studied were relatives of patients diagnosed for depression (25.1%), substance use disorder (22.2%), schizophrenia (20.2%) and bipolar affective disorder (11.1%). Approximately 15% experienced no-to-mild burden, 51.3% mild-to-moderate burden and 34.0% high-or-severe burden. Nearly halve (49.0%) of participants experienced psychological distress. Severe rate of psychological distress was observed among subjects caring for patients with schizophrenia (60.7%), epilepsy (60.0%), substance use disorder (52.2%) and depression (49.0%). High burden of care was more preponderant among caregivers of relatives with mental retardation and epilepsy (50% each) and schizophrenia (39.3%). Having a higher educational qualification and being self-employed was a predictor of psychological distress. Gender of caregiver and the diagnosis schizophrenia among relatives of caregivers predisposed to burden of care. Three factors including social and emotional dysfunction, psychological distress and cognitive dysfunction were identified as components of psychological health through factor analysis. On the burden scale, six factor components were identified as: personal strain, role strain, intolerance, patients’ dependence, guilt and interference in personal life. Conclusion: There is a high prevalence of psychological morbidity and burden of care among family caregivers providing care for persons with mental illness.

 

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Psychiatric morbidity among informal caregivers of children suffering from intellectual developmental disorders

Objective: To assess the presence of psychiatric morbidity and associated socio-demographic factors among informal caregivers of children suffering from intellectual developmental disorders. Method: The analytical cross-sectional study was conducted at the Neurology Department of a tertiary care hospital in Rawalpindi, Pakistan, from January 1, 2018, to December 31, 2019, and comprised informal caregiver of children diagnosed with intellectual developmental disorders presenting at the paediatric or neurology outpatient clinics of the hospital. Intellectual developmental disorder was diagnosed by consultant neurologists or psychiatrists or paediatricians on the basis of International Classification of Diseases-11 criteria. Psychiatric morbidity in the informal caregiver was assessed using the 12-item general health questionnaire. Data was analysed using SPSS 23, and binary logistic regression was applied to assess association. Results: Of the 500 informal caregivers, 323(64.6%) showed psychiatric morbidity. Increasing age and comorbid epilepsy among the patients were significantly related to the presence of psychiatric morbidity among the informal caregivers (p<0.05). Conclusion: Majority of informal caregivers of children with learning difficulties were found to have psychiatric morbidity. 

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Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers

Introduction: In the Swiss canton of Valais, the first cases of SARS-CoV-2 were detected on 28 February 2020. Discharged patients’ and their family caregivers’ experiences in relation to safety, quality of care, trust and communication during the COVID-19 hospitalisation period remain unexplored. The study aims to collect the patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers. Methods and analysis: Patients aged ≥18 years, hospitalised between 28 February and 11 May 2020 and then discharged home, plus their family caregivers will be invited to complete a self-administrated questionnaire made up of 14 closed questions and 1 open-ended question. The questionnaire will include items on the patient’s hospital trajectory and assess the interpersonal trust placed in nurses and physicians based on Krajewska-Kułak et al’s Trust in Nurse Scale and Anderson et al’s Trust in Physician Scale. Participants’ perceived stress will be assessed using Cohen et al’s Perceived Stress Scale. Feelings of safety will be examined based on Dryhurst et al’s questionnaire on Risk Perception During Pandemics. After ethical clearance, data will be collected using a postal paper questionnaire and via an online web link. Descriptive and inferential statistics will be computed, and the open question will undergo a qualitative thematic analysis. We will analyse perceptions of the different hospital trajectories experienced by patients undergoing surgery with and without a SARS-CoV-2 infection. Ethics and dissemination: The Human Research Ethics Committee of Vaud (2020-02025) authorised this study. Gathering experiences and learning about the impact of the COVID-19 pandemic on the social determinants of health among discharged patients and families fit in well with the Triple Aim framework and the PREMs survey. The study will formulate recommendations to support interventions in the face of the second wave of COVID-19 pandemic and their effects on patients’ and their family caregivers’ experiences.

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Profile and needs of primary informal caregivers of older patients in Belgian geriatric day hospitals: a multicentric cross-sectional study

Background: With the improvement of life expectancy, the world faces increasing demands for care of older persons. In this manuscript, we define the characteristics of primary informal caregivers (PIC) of patients aged 75 years and older admitted to geriatric day hospitals (GDH) in Belgium. A PIC is defined as the person who most often provides care and assistance to persons who need to be cared for. We describe PIC socio-demographic characteristics, satisfaction, burden and wishes about caring; the type of assistance provided and received, their self-rated health, socio-demographic and medical characteristics of proxies, in particular the presence of behavioural disorders. Methods: We conducted a cross-sectional study in 25 GDH. Participants Four hundred seventy-five PIC of patients ≥75 years and their proxies. PIC completed a questionnaire at the GDH assessing burden by Zarit Burden Index-12 (ZBI-12), self-rated health, social restriction due to caregiving and financial participation. We compared the characteristics of PIC with high and low burden, and the characteristics of spouses and adult children PIC. We also analyzed factors associated with a high burden in a multivariable logistic regression model. Results: PIC were mainly women (72%), adult children (53.8%) and spouses (30.6%). The mean age was 64 ± 14 years for PIC and 84 ± 5 years for care recipients. PIC helped for most of Activities in Daily Living (ADL) and Instrumental ADL (iADL). The median ZBI-12 score was 10 [IQR 5–18]. In multivariable regression analysis, a high burden was positively associated in the total group with living with the relative (p = 0.045), the difficulty to take leisure time or vacation (p < 0.001), behavioral and mood disorders (p < 0.001;p = 0.005), and was negatively associated with bathing the relative (p = 0.017) and a better subjective health status estimation (p < 0.001). Conclusion: Primary informal caregivers, who were predominantly women, were involved in care for ADL and iADL. A high burden was associated with living with the relative, the difficulty to take leisure time or vacation and the relative’s behavioral and mood disorders. Bathing the relative and a subjective health status estimated as good as or better than people the same age, were protective factors against a high burden.

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Prevalence of psychological disorders among caregivers of children with intellectual disabilities and motor disabilities in Shiraz

Introduction: The prevalence of mental disorders plays an important role in identifying the state of mental health of the community and estimate the required facilities at any time. Objectives: Therefore, the purpose of this study was to investigate the prevalence of psychological disorders in caregivers of children with intellectual disabilities and motor disabilities in Shiraz. Methods: The research was descriptive and cross-sectional survey. The statistical population consisted of all mothers of children with disabilities who were admitted to welfare centers and clinics of Shiraz in 2019. Of these families, 35 mothers with children with intellectual disability and 35 mothers with children with motor disability were selected as the sample group. SCL-90-R (1976) was used to collect of data. For analyze the data, MANOVA test was used. Results: The results of this study showed that the most common psychological disorders in caregivers of children with intellectual disability were aggression (hostility), hypersensitivity to interpersonal relationships, anxiety and depression, and in caregivers of children with motor disabilities were physical complaints, sensitivity to interpersonal relationships, paranoid thoughts and anxiety. Conclusions: According to the findings of this research, it can be concluded that caregivers of children with special needs in terms of mental health are not in a favorable situation, which is due to the lack of proper adaptation with the disability of their child and the failure to meet their needs.

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Pressure Injury Prevention Knowledge Among Family Caregivers of Patients Needing Home Care

Background: One of the complications that patients in need of home healthcare might experience is pressure injury. Given that a significant part of the care of these patients is performed by their family caregivers, they must have sufficient knowledge about prevention and treatment of pressure injuries. Methods: We investigated the knowledge related to pressure injuries among family caregivers of patients needing home care who were at risk of pressure injury. Family caregivers of patients in Iran who needed home care services and were at risk of developing pressure injuries based on the Braden scale were invited to participate. A special questionnaire designed by Arboledas and Pancorbo-Hidalgo was used to assess the caregivers' level of knowledge. This questionnaire consists of 23 items, and with total scores between 23 and 46. A higher score indicates a higher level of knowledge about pressure injuries. A total of 323 family caregivers participated, most of whom were female. Results: The mean total score of caregivers' knowledge about pressure injuries was 34.5 ± 3.4 (ranging 23 to 42). Most of the participants (n = 290) stated they did not receive adequate education related to pressure injuries. Among the demographic variables, a significant relationship was observed between the level of caregivers' knowledge with the level of education, younger age, offspring, admission in intensive care units, and male sex (p < 0.005). Conclusions: Family caregivers did not have sufficient knowledge about pressure injuries. Most of them did not receive the necessary education during the time of their patient's hospitalization. This issue should be considered by healthcare providers, and the necessary interventions should be considered to improve the situation.

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Predictors of health service use by family caregivers of persons with multimorbidity

Background: Informal caregivers of patients with multiple chronic conditions are socially good, promoting the sustainability of a large part of home care provision. However, this very demanding activity causes health problems that increase their own need for health services. This study analyses the use of health services by informal carers, comparing it with the use made by the general population with similar characteristics. Methodology: Cross-sectional analytical study carried out in the Malaga-Valle Guadalhorce Primary Health Care District (Spain). Healthcare demand and perceived health were measured in the family caregivers, compared to the general population. Strobe Statement for observational studies has been used to strength the report of the results. Results: Final sample consisted of 314 family caregivers together with a subsample of 2.290 non-caregivers taken from data of the National Health Survey. This subsample was paired by gender with our sample. Formal caregivers make fewer annual visits to the health services, with respect to the general population, regardless of the perceived level of health. The difference of the means between those who perceive their health as very poor was 0.11 (95% CI: 0.01 to 0.20) consultations with the family doctor, 0.21 (95% CI: 0.15 to 0.26) consultations with medical specialists and 1.70 (95% CI: 1.52 to 1.87) emergency room attention. Three independent factors were identified that predispose to the increased use of health services: background of greater education achievement (OR 8.13, 95% CI: 1.30 to 50.68), non-cohabitation with the care recipient (OR 3.57, 95% CI: 1.16 to 11.11) and a more positive physical quality of life component (OR 1.06; 95% CI: 1.03 to 1.09). Discussion and Implications: Intrinsic components of the caregiver reveal their independent relationship with the provision of informal care and the use of health services. A broader vision is needed for the factors that influence the health of these caregivers to develop multipurpose interventions and improve the consistency and effectiveness of the health services offered to the caregiver. 

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Predictors of Family Caregiver Burden in Shanghai

Background: This study explored predictors of family caregiver burden against the backdrop of the rapidly aging population and gradually weakening family care in urban China. Methods: It used a unique sample from the 2017 survey on older adults with functional disability and their family caregivers in Shanghai, China. A multi-pronged approach and ordinary least squares (OLS) regression were employed to identify predictors of family caregiver burden. Results: Statistical analysis revealed that approximately 25% of caregivers felt stressed. Many independent variables related to caregivers, care recipients, their relationship, and social support had statistically significant impacts on caregiver burden. This study also found that caregiver educational level, caregiver family economic status, and the number of other caregivers had significant moderating effects on the correlation between older people's ability to perform activities of daily living (ADL) and family caregiver burden. Conclusions: Policy implications derived from those findings were also discussed.

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Predictors of Depressive Symptoms among Family Caregivers of Patients with Dementia in Java, Indonesia

Objective: Depressive symptoms are common mental health problems among the family caregivers of patients with dementia. However, little is known about the prevalence of depressive symptoms among the family caregivers of patients with dementia in Indonesia. This study aimed to examine: 1) the factors predicting depressive symptoms, 2) the mediating role of social support in the relationship between burden and depressive symptoms, and 3) the association between depressive symptoms and healthcare utilization among family caregivers. Methods: This was a cross-sectional study involving 250 family caregivers of patients with dementia recruited from four hospitals in Java, Indonesia. Data were collected by Zarit Burden Interview (ZBI); the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Mastery scale, the Multidimensional Scale of Perceived Social Support, and the Center for Epidemiologic Studies Depression (CES-D) Scale. Descriptive statistics, chi-square test, hierarchical multiple linear regression, and Baron and Kenny’s regression method were used to analyze the data. Results: The results revealed that about a quarter of the participants (24.8%) experienced depressive symptoms. Caregiver burden, mastery, behavioral and psychological symptoms of dementia, and social support explained 45.5% of the variance in the prevalence of depressive symptoms among family caregivers (R2=0.455). Social support also partially mediated the association between caregiver burden and depressive symptoms. There was no association between depressive symptoms and the use of healthcare services among the family caregivers. Conclusion: The findings revealed that social support is a mediating factor affecting the relationship between caregiver burden and depressive symptoms. Interventions targeting social support to help alleviate caregiver burden would be effective in helping reduce depressive symptoms in the family caregivers of patients with dementia. 

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Pilot test of a learned resourcefulness program for older family caregivers in Taiwan

Background: Learned resourcefulness, a theory-based education intervention, can be applied to provide strategies to improve the health status and reduce caregiver burden for older family caregivers. Methods: We developed a culturally relevant SOURCE program and designed a pilot study to its effect and feasibility for older family caregivers living in Taiwan. Using a quasi-experimental study with one-group, pre-test and post-test design, we recruited a convenience sample of 30 older family caregivers who received home-care services from a regional hospital in southern Taiwan. The older family caregivers participated in and completed the four-week SOURCE program. Effectiveness and feasibility data were collected after the completion of the program. Findings: Results indicated that the SOURCE program significantly improved caregiving burden (t = 3.05, p = .005) and revealed that the program was helpful and useful to older family caregivers. The next step will be to use the SOURCE program with more older family caregivers. 

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Physical, Psychological, Social, and Spiritual Well-Being of Patients with Chronic Lymphocytic Leukemia and Their Caregivers: A Scoping Review

Background: Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults, and it has been shown to cause considerable symptom burden in both patients and their caregivers. Recently, studies have focused on quality-of-life (QOL) measures and the relationship with health outcomes. However, to date, the breadth of QOL domains and measures is not well represented in the literature, diminishing the ability to form specific questions and to develop a systematic review. Objective: The objective of this scoping review was to investigate and analyze articles related to CLL patient and caregiver physical, psychological, social, and spiritual well-being published between January 1, 2015, and June 15, 2020. These articles will be used to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following a CLL diagnosis and throughout the continuum of care. Methods: This scoping review considered all studies that addressed physical, psychological, social, and spiritual well-being of patients diagnosed with CLL or their caregivers. A 3-step search strategy was undertaken: (1) an initial limited search of PubMed; (2) an extensive search using all identified keywords and index terms; and (3) a hand search of the reference lists of included articles. This review was limited to studies published in English between January 1, 2015, and June 15, 2020. Reviewers extracted data independently; disagreements that arose between the reviewers were resolved via discussion or with a third reviewer. Results: A total of 5629 articles were screened, 937 full-text publications were reviewed, and 75 relevant articles were identified. Most studies focused on physical well-being. Several review articles discussed treatment algorithms and consideration for treatment of patients with CLL. No articles evaluating the patient/ caregiver relationship were identified, and only a single study was designed to assess caregiver health status. Conclusion: The most commonly evaluated QOL component was physical well-being, whereas only a single article discussed spiritual well-being. Social well-being was discussed in 4 articles. Overall, 8 articles spanned the psychological and physical domains. Inclusion of all 4 QOL components will be beneficial for developing a patient education platform for patients and their caregivers following a diagnosis of CLL and throughout the care continuum.

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Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers

Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically. Data were analysed deductively with reference to these a priori principles. Results: 11 consented persons with dementia and 36 family/carers participated. A total of eight core VIPS concepts were derived from the data. While many occasions of person-centred care occurred, there was variability in staff expertise, interest and aptitude for dementia care work. Neglect of person-centred principles more frequently occurred for the usual care group, where staff failed to place the person and their family/carer at the centre of service. Conclusions: person-centred services for persons with dementia requires that hospital executive equip staff with the relevant knowledge, skills and support to adhere to person-centred care guidelines. Hospitals must address workplace cultures and procedures that favour organisational systems over person-centred services.

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Perceived caregiving preparedness and quality of life among Indonesian family caregivers of patients with life-limiting illness

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver s quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient s socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236 0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person s preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management. 

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Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials? Methods: The characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial. Results: Overall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P < 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving. Conclusion: The benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.

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Parkinson’s symptoms and caregiver affiliate stigma: A multinational study

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson’s disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer’s disease are discussed. Methods: Survey data were collected in PD clinics at public, academic medical centers. Informal caregivers of an individual with PD from the US (n = 105) and from Mexico (n = 148) participated in the study. Caregivers completed a questionnaire that included the MDS Unified PD Rating Scale to describe the symptoms of the individual with PD, as well as the Affiliate Stigma Scale and demo-graphic information. Results: A series of multiple regressions was run to examine whether PD symptoms were associated with affiliate stigma and if these differed by country. These regressions suggested that different patterns of PD symptoms predicted affiliate stigma in each country. Stigma was higher in the US compared to Mexico, and the relationship between bowel/bladder symptoms and affiliate stigma was significantly stronger in the US. Conclusion: Symptoms of individuals with neurodegenerative diseases are related to affiliate stigma experienced by caregivers, and these relationships may differ cross-culturally. Negative public attitudes concerning bowl and bladder issues and the physical symptoms that accompany PD re-main a source of stigma for caregivers and families, particularly in the US. Interventions for caregivers of individuals with neurodegenerative diseases should include strategies for coping with stigma concerning bladder and bowel problems, as well as other physical and mental health issues. 

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Parents' and caregivers' satisfaction with community‐based rehabilitation (CBR) services for children with disability in east coast states in Peninsular Malaysia

Background: The Community‐Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre‐based and home‐based care since 1984. Methods: A cross‐sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi‐staged sampling, and simple randomisation at CBR level. Respondents self‐administered the Physical Therapy Satisfaction Questionnaire (PTSQ) and provided sociodemographic data. Results: A total of 297 respondents were recruited and all the questionnaires were returned complete, making the response rate 100%. Total satisfaction scores and factors influencing respondents’ satisfaction for both groups were analysed. The mean total satisfaction score for centre‐based and home‐based were 84.69 (SD = 10.01) and 75.30 (SD = 12.23; t = 7.160, p ≤ .001) respectively. Ninety‐eight per cent of centre‐based and 89% of home‐based respondents were satisfied with the current services. There were significantly mean differences in the satisfaction level of respondents of different states respectively (Kelantan mean 84.92 10.83, Terengganu mean 77.49 11.16 and Pahang mean 77.47 12.93, p ≤ .001). Factors associated with satisfaction were education (p = .002), occupation (p = <0.001), monthly income (p = .001) and source of income (p = .001). Conclusions: In conclusion, majority of parents and caregivers were satisfied with current services provided at CBR and satisfaction with services was dependent on CBR centre location and education and financial earning capacity.

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Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study

Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers’ experiences of managing their child’s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child’s health, (4) emotional impact of the intervention, (5) child’s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.

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Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life

Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient's disease course and at the end of life. These include personal patient factors and SDM factors. It has been identified that spiritual and community group support is a powerful, but inadequately used resource for these discussions. It can improve patient-SDM-provider communications, decrease psycho-social distress, and avoid unnecessary interventions at the end of life.

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The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.

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The Role of Beliefs and Psychological Factors in Caring of Patients With Cancer

Background: Cancer affects not only the patient but also family members as informal caregivers. In order for family caregivers to achieve balance and improve their caregiving roles, it is essential to identify the beliefs and psychological aspects affecting them. Methods: The present study was carried out qualitatively with a descriptive phenomenological design in 2020. The main participants in this study were selected from one of the major referral centers for cancer patients in West Azerbaijan Province, located in northwestern, Iran. Twenty-two family caregivers were selected through a purposive sampling method. Findings: Data analysis showed that the 3 main themes of “emotional and religious preconceptions,” “feeling committed to caring for beloveds,” and “resilience” played a prominent role in family caregivers. These factors led to caregivers' commitment to and responsibility for care. Holistic care necessitates consideration of all aspects of human life. The results of this study led to an understanding of the complex tendencies and feelings of family caregivers. Conclusions: Based on the results, it was found that care is influenced by beliefs, religious preconceptions, sociocultural, and psychological factors. Identifying these variables helps medical staff share planning, interventions, and counseling with family caregivers and address issues that affect them.

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The Relationship Between Health-Related Quality of Life and Saliva C-Reactive Protein and Diurnal Cortisol Rhythm in Latina Breast Cancer Survivors and Their Informal Caregivers: A Pilot Study

Introduction: To date, no study has explored associations between objective stress-related biomarkers (i.e., inflammatory markers, diurnal rhythm of cortisol) and health-related quality of life (HRQOL) in Latina breast cancer survivors and their informal caregivers (i.e., family, friends). Method: This cross-sectional feasibility study assessed saliva C-reactive protein, saliva diurnal cortisol rhythm (cortisol slope), and self-reported HRQOL (psychological, physical, and social domains) in 22 Latina survivor–caregiver dyads. Feasibility was defined as ≥85% samples collected over 2 days (on waking, in afternoon, and in evening). Associations between biomarkers and HRQOL were examined with correlational analyses. Results: Collection of saliva was feasible. Strongest associations were observed between survivor evening cortisol (as well as cortisol slope) and fatigue, a component of physical HRQOL. Discussion: Associations presented may help promote investigations of mechanisms linking stress-related biomarkers and HRQOL in Latina breast cancer survivor–caregiver dyads, which will facilitate development of culturally congruent interventions for this underserved group.

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The place of family caregivers for older adults with Alzheimer’s disease: a literature review in Brazil and the United States

Background: This is a review of the literature on family caregivers of patients with Alzheimer’s disease from 2013 to 2017 available in the BVS, Scopus, and PubMed databases. Methods: The descriptors used (translated from Portuguese) were Alzheimer’s disease, caregivers, elderly health, by combination. Findings: Of the 163 papers analyzed, after applying the relevance test, we selected 26 papers presented from five thematic units: 1- Literature reviews; 2- Prevalence profiles of AD caregivers; 3- Qualitative research that analyzes the feelings and sufferings of caregivers; 4- Comparative studies and objective tests; 5- Evaluation studies of intervention programs. The comprehensive and comparative analysis of the investigations highlighted differences and similarities, advantages, and disadvantages of the samples and methodologies adopted in Brazil and the US. The articles analyzed factors that influence family caregivers’ impact with Alzheimer’s disease, identifying the affective bonds involved, the expected reciprocity, the physical, emotional, and social costs associated with a prolonged chronic illness and requiring increasingly complex care. Conclusions: Family caregivers and older adults with AD require a broad, accessible, or articulated support network inside and outside the family.

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The Perceptions of Nurses and Nursing Students Regarding Family Involvement in the Care of Hospitalized Adult Patients

Background: Over the past few decades, there have been concerns regarding the humanization of healthcare and the involvement of family members in patients' hospital care. The attitudes of hospitals toward welcoming families in this respect have improved. In Arab culture, the main core of society is considered to be the family, not the individual. Objectives: The objective behind involving family in patient care is to meet patients' support needs. Consequently, this involvement affects nurses and their attitudes toward the importance of family involvement in patient care. Objectives: To describe nurses' and nursing students' perceptions of family involvement in the care of hospitalized adult patients in Saudi Arabia. Design: This study used a quantitative descriptive cross-sectional design. The data were collected using a convenience sampling survey via social media. Results: A total of 270 participants (staff and students) took part in this study, including 232 (85.9%) females and 38 (14.1%) males. Moreover, a high percentage of participants (78.8%) acknowledged that family presence strongly affected the improvement of the patient's condition. However, 69.3% of participants thought that involving family members during special care processes or cardiopulmonary resuscitation (CPR) would be traumatizing for these individuals. Moreover, there was a significant diffidence between the attitudes of the nurses and nursing students toward family involvement and the number of years of employment (F = 3.60, p < 0.05). On the contrary, there were insignificant differences between the attitudes of the nurses and nursing students toward family involvement and their gender, nationality, age, education level, and years of work experience in Saudi Arabia (p > 0.05). Furthermore, the regression analysis showed a significant negative correlation between nurses' years of employment and their support of family involvement in patient care (ß = −0.20, SE = 0.08, t = −2.70, p = 0.01). Conclusions: Nurses with more experience showed no support for family involvement in patient care. We have to consider the clinical barriers that affect nurses' support for family involvement in patient-centered care, such as hospital polices, guidelines, and the model used for family-centered care integration in the hospital system to facilitate the interaction between healthcare providers and family members.

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The Patterns of Caregiving Activities for Family Caregivers of Older Adults in Hong Kong: An Exploratory Latent Class Analysis

Objectives: This study identified the classes (i.e. patterns) of caregivers' activities, based on their engagements in caregiving activities, and explored the characteristics and the caregiver burden of these classes. Methods: This study was a secondary analysis of a cross-sectional survey on the profiles of family caregivers of older adults in Hong Kong. A latent class analysis approach was adopted to classify family caregivers (N = 932) according to their routine involvements in 17 daily caregiving activities: 6 activities of daily living (ADLs) and 8 instrumental activities of daily living activities (IADLs) in addition to emotional support, decision making, and financial support. Multinomial logistic regression and multiple linear regression illuminated the characteristics of the classes and compared their levels of caregiver burden. Results: The family caregivers fell into 5 classes: All-Round Care (High Demand, 19.5%), All-Round Care (Moderate Demand, 8.2%), Predominant IADLs Care (High Demand, 23.8%), Predominant IADLs Care (Moderate Demand, 32.5%), and Minimal ADLs and IADLs Care (Low Demand, 16.0%). These classes exhibited different characteristics in terms of care recipients' cognitive statuses and caregiver backgrounds. The levels of caregiver burden differed across classes; the All-Round Care (High Demand) class experienced the highest levels of caregiver burden. Discussion: This study contributes to existing scholarship by turning away from a predefined category of care tasks to explore the patterns of caregiving activities. By identifying caregiving activity patterns and understanding their associated characteristics and caregiver burden, prioritizing and targeting caregiver support interventions better is possible.

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Older Caregivers With HIV: An Unrecognized Gap in the Literature

Background: Although the number of older people living with HIV (PLWH) is growing, prior research has focused on older PLWH as care recipients and psychosocial factors (e.g., stigma, social support) associated with their HIV care. Literature on HIV caregiving mainly focuses on family members providing care to PLWH or children of parents with HIV. There is a gap in the literature in terms of older PLWH's roles as caregivers to their family members. Thanks to combination antiretrovirals that helpPLWHlive longer and have healthier lives, many olderPLWHnow find themselves in a position to provide care to family members. To help olderPLWHage successfully, it is important to understand their role as caregivers while they juggle responsibilities with their own health care needs. Objectives: This article elucidates this gap in the literature on older PLWH who are caregivers and provides direction for a research agenda and potential clinical implications.

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Non-spousal family support, marital status, and heart problems in adulthood

Background: Support from one's spouse has long been documented as a significant determinant of health for married individuals. However, non-spousal family support may play an important role in health particularly for unmarried individuals. Objectives: Therefore, this study examined whether the association between non-spousal family support and diagnosis of heart problems differed by marital status and whether gender and education moderated these associations. Results: Data came from the first two waves of the Midlife in the United States (MIDUS) study. This study selected respondents who participated in both waves of MIDUS and were not diagnosed with a heart problem at Wave 1 (N = 3,119). Participants reported whether they had any heart trouble. Discrete-time event history analysis was used to examine the risk of heart problems between MIDUS Waves 1 and 2. A higher level of non-spousal family support was associated with a lower risk of developing a heart problem only among unmarried women and unmarried individuals with high school education or less, and not for married individuals. Conclusions: Findings highlight the importance of considering specific sources of family support when studying heart health, and the health-protective role of non-spousal family support for those who are not married.

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Needs of Dementia Family Caregivers in Spain during the COVID-19 Pandemic

Background: We explored the experience from caregivers of people with dementia (PwD) during mandatory confinement due to the COVID-19 pandemic in Spain. Methods: An online survey, which studied the perceptions of the main problems and consequences experienced during confinement, was answered by 106 family caregivers of PwD. Results: Results showed that family caregivers of PwD experienced psychological problems, like anxiety, mood, sleep, or eating disorders during confinement and felt less supported when they had to handle challenging behaviors or offer meaningful activities. Conclusions: An innovative multi-Tiered supportive approach is needed which considers a post-pandemic reality and ensures the continuity of quality care for PwD and their family careers. 

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Namaste care delivered by caregivers of community‐dwelling older adults with moderate to advanced dementia: A mixed methods study protocol

Aim: The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community‐dwelling older adults with moderate to advanced dementia. Design: A multiphase mixed methods design combining quantitative and qualitative methods will be used. Methods: This study is composed of two phases. Phase 1 is guided by a qualitative description approach. Small group workshop sessions with 8–10 caregivers of community‐dwelling older adults with moderate to advanced dementia will be conducted to adapt Namaste Care. In Phase 2, 10–20 caregivers will receive training and implement the adapted Namaste Care approach at home. A one group, before‐after design will be used to evaluate feasibility, acceptability and preliminary effectiveness of the approach over 3 months. Feasibility will be assessed using quantitative measures and acceptability will be explored using qualitative methods. Outcomes to evaluate preliminary effectiveness include quality of life (QoL), positive perceptions of caregiving, self‐efficacy, and caregiver burden. Discussion: There are currently few skill‐building interventions that can be delivered by caregivers of people with moderate to advanced dementia at home. Caregivers should be involved in developing programs to enhance program relevance. This research will be the first to explore the feasibility of implementing the Namaste Care approach at home by caregivers. Impact: Study results will provide important information about the feasibility and preliminary effects of an adapted form of Namaste Care. This program has the potential to improve the QoL of caregivers and may prevent hospitalization or long‐term care placement of older persons with moderate to advanced dementia. The revised Namaste Care program supports building the skills of caregivers so that their needs and the needs of older persons with dementia living at home are being addressed.

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‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

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The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients with Advanced Cancer and Family Caregivers

Background: Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner. Methods: This study used the Actor-Partner Interdependence Model as the conceptual model to investigate the mutual effects of perceived spiritual needs on the quality of life in patients with advanced cancer and their family caregivers after being admitted to hospice. Findings: This cross-sectional study used the baseline data of a large clinical trial and identified that patients with cancer and their family caregivers perceived similar spiritual needs associated with the community and outlook needs and had fewer unmet spiritual needs. After controlling for partner effects, perceived outlook needs shown in patients significantly predicted their own functional well-being and social/spiritual well-being. Outlook and community needs perceived by family caregivers also significantly predicted their own mental health. Conclusion: Although partner effects were not shown as expected, the findings provide insight into the mutuality of spirituality and demonstrate the necessity of providing timely and ongoing spiritual assessment and care. 

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Modifiable factors associated with behavioural and psychological symptoms of dementia among patients residing at home: The impacts of patient, caregiver and environmental variables

Objectives: The present study aimed to explore the modifiable factors of behavioural and psychological symptoms of dementia (BPSD) among patients residing at home in terms of patient, caregiver and environmental factors. Methods: A cross-sectional survey of 193 patients with dementia residing at home and their caregivers who visited the memory clinic of the Department of Neurology in a tertiary (the highest level) hospital in China from November 2018 to May 2019 was performed. Results: Exacerbated BPSD were associated with patient (old age, high education level, increased dementia severity, and the use of psychotropic drugs), caregiver (low positive aspects and high expressed emotion) and environmental (poor home environment) factors. The use of psychotropic drugs by the patient, positive aspects and expressed emotions of the caregiver, and home environment were modifiable factors that provided evidence for the direction of intervention for BPSD among patients residing at home.

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Modeling types of informal care dyads by gender, primary condition, and relative age

Background: While women remain the majority of caregivers, gender parity is reported among Millennials, people of color, and LGBTQ caregivers. Such dynamics of care dyads are rarely explored in relationship with caregiver selection, social support, or care outcomes, and without standardized measures we are uncertain whether this trend is associated with youth, demographic changes, or a societal shift. Methods: Utilizing the Caregiving in the US 2015 data set, this exploratory, quantitative study examines relationships between gender, primary condition, and two social designations around age (kinship generations and birth cohorts) to develop a preliminary categorization of informal caregivers in the United States by reviewing descriptives and correlations, then testing with multivariate regression. Results: A model combining Millennial caregivers, same-generation dyads, and two primary conditions (mental illness and stroke) successfully predicts variance as to whether a dyad will comprise one woman caring for another woman, the most common dyad. Conclusions: Findings demonstrate the interconnectedness of caregiving generational models, suggesting that categorizing dyads from such variables is viable. This study deepens inquiry into intergenerational caregiving and makes a case for generationality and caregiving to be studied together.

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mHealth-Supported Delivery of an Evidence-Based Family Home-Visiting Intervention in Sierra Leone: Protocol for a Pilot Randomized Controlled Trial

Background: Past trauma and exposure to violence have been related to poor emotion regulation and household violence, which can have persistent mental health effects across generations. The Family Strengthening Intervention for Early Childhood Development (FSI-ECD/called Sugira Muryango in Rwanda) is an evidence-based behavioral home-visiting intervention to promote caregiver mental health, positive parenting practices, and early childhood development among families facing adversity. In Sierra Leone and other lower- and middle-income countries, mobile health (mHealth) technology has the potential to improve health care delivery and health outcomes. Objective: This study aims to (1) apply a user-centered design to develop and test mHealth tools to improve supervision and fidelity monitoring of community health workers (CHWs) delivering the FSI-ECD and (2) conduct a pilot randomized controlled trial of the FSI-ECD to assess feasibility, acceptability, and preliminary effects on caregiver mental health, emotion regulation, caregiving behaviors, and family violence in high-risk families with children aged 6-36 months in comparison with control families receiving standard care. Methods: We will recruit and enroll CHWs, supervisors, and families with a child aged 6-36 months from community health clinics in Sierra Leone. CHWs and supervisors will participate in 1 problem analysis focus group and 2 user interface/user experience cycles to provide feedback on mHealth tool prototypes. Families will be randomized to mHealth-supported FSI-ECD or standard maternal and child health services. We will collect quantitative data on caregiver mental health, emotion regulation, caregiving behaviors, and family functioning at baseline, postintervention, and 3-month follow up. We will use a mixed methods approach to explore feasibility and acceptability of mHealth tools and the FSI-ECD. Mixed effects linear modeling will assess FSI-ECD effects on caregiver outcomes. Cost-effectiveness analysis will estimate costs across FSI-ECD versus standard care. Results: Funding for this study was received from the National Institutes of Mental Health on August 17, 2020. Institutional Review Board approval was received on September 4, 2020. Data collection is projected to begin on December 15, 2020. Conclusions: This study will provide important data on the feasibility, acceptability, and preliminary efficacy of mHealth-supported delivery of an evidence-based family home-visiting intervention in a postconflict LMIC. Trial Registration: ClinicalTrials.gov NCT04481399; https://clinicaltrials.gov/ct2/show/NCT04481399. International Registered Report Identifier (IRRID): PRR1-10.2196/25443

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Mental Health and Neurodevelopmental Disorders: Examining the Roles of Familism, Social Support, and Stigma in Latinx Caregivers

Background: Those caring for someone diagnosed with a neurodevelopmental disorder are at risk of experiencing depression and anxiety. However, limited research has examined risk and predictive factors associated with internalizing symptomatology in caregivers from ethnic and culturally diverse backgrounds. Aims: We aimed to identify predictive factors for internalizing symptomatology. Methods: Using standardized scales, anxiety and depression levels were measured in a predominantly Latinx sample along with their endorsed levels of familism, perceived social, and support affiliate stigma. Multivariate regression analyses were used to test the hypotheses that familism, perceived social support, and affiliate stigma are associated with self-reported depression and anxiety symptoms, separately. Results: The results indicated a significant effect of perceived social support and affiliate stigma on depression and anxiety symptoms, but no such effect of familism. Findings indicate that higher perceived social support scores predicted lower rates of anxiety and depression in caregivers. Conversely, higher affiliate stigma scores predicted higher rates of anxiety and depression. Conclusions: Results provide important clinical implications when working with Latinx families and caregivers of a family member diagnosed with a neurodevelopmental disorder.

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Mediating effects of family functioning on the relationship between care burden and family quality of life of caregivers of children with intellectual disabilities in Mongolia

Background: Intellectual disabilities are characterized by constant and complex needs for care that place a heavy burden on the families of affected individuals and affect their overall quality of life. We evaluated the mediating effects of family functioning on the relationship between care burden and the family quality of life of caregivers of children with intellectual disabilities in Mongolia. Methods: Data were collected from a sample of 150 caregivers of children with intellectual disabilities from October 2017 to November 2017. Multiple linear regression analyses were performed to examine the mediating effects of family functioning. Results: Family functioning had a partial mediating effect (β =.702, p <.001) on the relationship between care burden and family quality of life. Conclusion: Family functioning should be considered when developing a social support intervention to improve family quality of life among caregivers of children with intellectual disabilities.

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Measuring the Burden on Family Caregivers of People With Cancer: Cross-cultural Translation and Psychometric Testing of the Caregiver Reaction Assessment--Indonesian Version

Background: The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver's burden in Indonesia. Objective: To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA--Indonesian version (CRA-ID) with family caregivers of patients with cancer. Methods: Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured. Results: A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%.Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81. Conclusions: The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia. Implications for Practice: Nurses can use the CRA-ID to measure family caregivers' burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.

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Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

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The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Background: The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. Methods and findings: As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. Conclusions: To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

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The lived experience of family members who care for children with cancer: An interpretative phenomenological approach

Objectives: This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Methods: Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Findings: Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. Conclusions: This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations. 

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Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim. A thematic analysis was performed to determine the themes and subthemes in the results. Findings: The results revealed that participation in programmes and activities was not the single factor leading to transformative outcomes; family support, self-adjustment, the ability to cope, and coordinated intervention in accordance with individual preferences and needs also facilitated transformative outcomes for nonparticipants. Conclusions: Further studies should focus on interventions modifying factors of perceived caregiver burden, for instance, by providing psychological support to informal caregivers, offering programmes and activities targeting the management of neuropsychiatric symptoms in patients with dementia, and supporting quality of life. 

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The Latino Family Caregiving Experience Along the Trajectory of Dementia

Background: The number of people affected by dementia continues to increase. Dementia is progressive and affects the ability of the person to care for themselves with time. The persons living with dementia have cognitive changes that worsen over time and affect their physical function. Latino families are known for being a collectivist culture who value family. There are studies that describe the experience of caregivers caring for someone with dementia; however, vi few are focused on multiple family members. There is also a need for further research, specifically on Latino families going through this experience. Methods: Qualitative descriptive design with grounded theory strategies was used for this study. The Chronic Illness Trajectory Framework was used as a sensitizing framework. Bilingual and monolingual (Spanish/English) Latino/Hispanic dementia caregivers were recruited. A total of 11 families were interviewed. Constant comparative analysis was used. Initial codes were created and then grouped into categories which were further broken into themes. Results: Five categories emerged from the data analysis. These categories included: (a) culture in caregiving, (b) learning about dementia, (c) relationships, (d) emotional responses, and (e) challenges and strengths. Each category had an impact on family caregivers throughout the trajectory of dementia. Culture was shown to have a large impact on the overall experience. Conclusions: This study contributes to the body of knowledge surrounding Latino family dementia caregivers. These findings facilitate a better understanding of the experiences of these families. One of the more significant findings was that of conflict within these families and how it affects the caregiving experience. In time, this information can enable the creation of interventions for this population and improve their experiences. These interventions, in turn, can promote better outcomes for caregivers and their loved ones. 

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Is the grass greener on the other side? The health impact of providing informal care in the UK and the Netherlands

Background: Facing rapidly ageing populations, many Western countries aim to stimulate informal care provision as a way to meet the growing long-term care (LTC) demand. While various studies report the impact of providing informal care on the health of caregivers, it is less clear whether and to what extent this impact differs across countries. Methods: Using propensity score matching we match caregivers to similar non-caregiving individuals using four waves of the Dutch Study on Transitions in Employment, Ability and Motivation and the UK Household Longitudinal Study. The samples consist of 8129 Dutch and 7186 UK respondents, among which respectively 1711 and 1713 individuals are identified as caregivers. We explore whether the health impact of providing informal care differs by country once similar caregivers, in terms of the intensity of provided care, are compared. Results: In both countries we find negative mental health effects of providing informal care. While these effects slightly differ by country, the main differences arise between subgroups of caregivers. Individuals that provide more than 20 hours of informal care per week, and those who face a double burden of care and full-time employment experience the most severe negative mental health effects. Conclusions: These results indicate that health effects of providing informal care are mediated by the specific caregiving context, allowing policymakers to use information on this context to provide targeted aid. In addition, it suggests that previously reported differences of caregiving effects across countries could be driven by differences in the population of informal caregivers which are shaped by countries’ LTC policies. 

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Is informal care sufficient to meet the long-term care needs of older people with disabilities in China? Evidence from the China Health and Retirement Longitudinal Survey

Background: Rapid demographic shifts and socio-economic changes are fuelling concerns over the inadequate supply of informal care - the most common source of care-giving for older people in China. Unmet long-term care needs, which are believed to cause numerous adverse effects on health, continue to increase. Methods: Drawing data from the 2015 wave of the China Health and Retirement Longitudinal Survey, this study explores the relationship between informal care provision and unmet long-term care needs among older people in China. We first examine the availability of informal care among older people with disabilities. We then analyse whether a higher intensity of informal care leads to lower unmet needs. Findings: Our findings suggest that the majority of older people with disabilities receive a low intensity of care, i.e. less than 80 hours per month. Besides, a higher intensity of informal care received could significantly lower the probabilities of unmet needs for the disabled older adults who have mainly instrumental activities of daily living limitations. Our study points out that informal care cannot address the needs of those who are struggling with multi-dimensional difficulties in their daily living. Conclusions: Our findings highlight a pressing need for the government to buttress the formal care provision and delivery systems to support both informal care-givers and disabled older people in China. 

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Involving families in psychiatric treatment and rehabilitation

Introduction: Psychiatric rehabilitation promotes recovery in individuals with mental disabilities. Its mission is to engage patients and families or caregivers in a collaborative treatment process. The vision of recovery is more likely to become a reality when patients and families are actively involved in treatment. Numerous factors have converged during the past decades to facilitate development and refinement of evidence-based approaches for strengthening families coping with mental disorders. Objectives: To review current knowledge on the importance of involving families in psychiatric treatment and rehabilitation, addressing effectiveness of family interventions, role of family coping skills in neutralizing stress and vulnerability, and family burden of mental illness. Methods: Non-systematic review of literature through search on PubMed/MEDLINE database for publications up to 2020. Textbooks were consulted. Results: Given the unpredictability of major mental disorders, families assume responsibility for extensive monitoring and supervision of a severely and chronically mentally ill relative. Clinical, social, family and economic benefits are achieved by adding psychosocial family interventions to a comprehensive array of services required by patients. Family interventions are not stand-alone modalities: they are coordinated with pharmacotherapy, illness management, crisis intervention, clinical case management, skills training and supportive services. Family interventions show benefits, such as fewer psychotic/affective episodes of exacerbation or relapse by the patient, reduced hospitalizations and improved family morale and less emotional burden. Conclusions: The new and effective family interventions do not stigmatize families as being ‘sick’ or in need of therapy to ‘straighten them out’. Family interventions are viewed as conferring added therapeutic protection to the patient and relatives.

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Internet Access and Usage Among Stroke Survivors and Their Informal Caregivers: Cross-sectional Study

Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers. Methods: A cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables. Results: Overall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001). Conclusions: Future feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.

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Intention to use respite services among informal care-givers of frail older adults in China: the role of care needs change

Background: Population ageing in China calls for evidence-based solutions, especially in terms of fulfilling long-term care needs among frail older adults. Respite services are identified as effective resources for alleviating care-giver burden and promoting the wellbeing of both older adults and their family care-givers. However, respite care is often under-used in China. Objectives: This research aimed to examine factors associated with intention to use respite services among informal care-givers in Shanghai, mainland China. Methods: This study was part of the Longitudinal Study on Family Caregivers for Frail Older Adults in Shanghai. Pairs of older adults and their care-givers (N = 583) who successfully completed the 2013 and 2016 waves were included in the data analysis. Two logistic regression models were conducted, one with time-invariant and one with time-variant factors. Results: The model with time-variant factors had greater explanatory power than the original Andersen model with time-invariant factors influencing intention to use respite services among care-givers. Care-givers had higher odds of intending to use respite services if they had higher care-giving burden, were caring elderly people who experienced care-giver transitions, or were caring for elderly people with increased function of ambulation or decreased function of feeding. Conclusion: The findings imply that change in functional health was a significant determinant of intention to use respite care. Relevant policy and service implications will be discussed.

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Integrated health and social care in the community: A critical integrative review of the experiences and well‐being needs of service users and their families

Background: A need for people‐centred health and social support systems is acknowledged as a global priority. Most nations face challenges in providing safe, effective, timely, affordable, coordinated care around the needs and preferences of people who access integrated health and social care (IHSC) services. Much of the current research in the field focuses on describing and evaluating specific models for delivering IHSC. Fewer studies focus on person‐centred experiences, needs and preferences of people who use these services. However, current international guidance for integrated care sets a precedence of person‐centred integrated care that meets the health and well‐being needs of people who access IHSC services. Methods: This integrative literature review synthesises empirical literature from six databases (CINAHL; MEDLINE; AMED; TRIP; Web of Science and Science Direct; 2007–2019). This review aims to better understand the experiences and health and well‐being needs of people who use IHSC services in a community setting. Results: Twenty studies met the inclusion criteria and results were thematically analysed. Three overarching themes were identified, including relationships, promoting health and well‐being and difficulty understanding systems. Findings of this review indicate that relationships hold significance in IHSC. People who access IHSC services felt that they were not always involved in planning their care and that there was a lack of clarity in navigating integrated systems; subsequently, this impacted upon their experiences of those services. However, service user and informal carer voices appear to be underrepresented in current literature and studies that included their views were found to be of low quality overall. Conclusions: Collectively, these findings support the need for further research that explores the person‐centred experiences and needs of people who access IHSC.

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Institutionalization of older French adults with dementia: Role of the informal carer's degree of kinship

Background: The institutionalization of a patient with Alzheimer's disease or other dementia (ADOD) is the last resort for the latter's family and/or caregivers. We hypothesized that the degree of kinship between the patient and his/her caregiver would influence the likelihood of institutionalization. Objective: To assess the association between institutionalization of patients with ADOD and the degree of kinship with the family caregiver. Methods: A cross‐sectional study of patients with ADOD aged 75 or over attending a memory center in France for the first time between 2011 and 2014, as recorded in the French National Alzheimer Database. Multivariable logistic regression was used to assess factors associated with institutionalization after adjustment for age, sex, the Mini‐Mental State Examination score, educational level, and type of dementia. Results: A total of 52,874 patients were included. The primary caregiver was most often a child (54.8%) or the spouse (36.7%). Compared with the "spouse" reference category, all the other caregiver categories were associated with a significantly greater likelihood of institutionalization; the odds ratio [95% confidence interval] was 4.68 [3.67–5.92] when the carer was a grandchild, 5.48 [4.93–6.09] for a child, 4.93 [4.11–5.91] for a daughter‐/son‐in‐law, 8.76 [7.15–10.70] for a sibling, and 8.93 [7.48–10.65] for a niece/nephew. Conclusion: The likelihood of institutionalization of older patients with ADOD varied with the degree of kinship. Compared with the "spouse" reference category, the likelihood was higher for all other types of caregivers but was especially high when the caregiver was not a direct descendant of the patient.

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Informal Family Caregiving at the End of Life: A Discursive Analysis

Background: Shifts in locations and levels of care and changing demographics have created a high demand for informal family caregivers. The U.S. healthcare system could not sustain the financial or human resources necessary to meet the needs of care recipients who are dying without the assistance of informal family caregivers. End-of-life caregivers pay a price— emotional, social, financial, and physical—throughout the caregiving process. Many factors contribute to the cost of caregiving, such as caregiver distress and burden. Despite the extensive scientific literature on caregiving at the end of life, necessary evidence to inform nursing science in ways that adequately and appropriately support and sustain those healthy informal family caregivers providing end-of-life care remains unknown. No research to date has approached this problem from a linguistic standpoint. Methods: This study used discourse-based analysis to examine a qualitative secondary dataset to understand which aspects of self (caregiver) and other (care recipient) are revealed through caregiver discourse and how a caregiver’s perception of self and the care recipient change over time. Principles of discourse analysis were applied to develop an analytic framework and explore the linguistic cues (i.e., grammar, reference, identity, deixis, stance, indexicality and agency) expressed by a caregiver in their role as caregiver. Findings: Findings demonstrated the usefulness of a discourse-based analytic method as a new approach in the reuse of large qualitative secondary datasets. In addition, linguistic cues were revealed about how a caregiver perceives self and the care recipient over time. Results established an analytic framework that can be applied to a larger sample of this dataset to more deeply and precisely reveal discursive cues within one End-of-Life Caregiving Trajectory (expected-death) and across all three trajectories (expected-death, unexpected-death and mixed-death). Understanding a caregiver’s discursive cues may give clinicians the ability to better identify subtle yet important expressions of caregivers’ perception of self and others in the caregiving role. Conclusions: Further analysis is needed to identify how these linguistic patterns can lead to interventions that support informal family caregivers. Timely and appropriate interventions in times of uncertainty can mitigate negative outcomes for the caregiver and care recipient, resulting in a healthy caregiving workforce.

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Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income

Background: Informal caregivers are those who provide care for others without compensation. In the US, 85 % of elderly individuals receive care from an informal caregiver, and this number is expected to increase. Caregivers often experience different types of strain, stemming from physical, emotional, and financial demands. Methods: Guided by intersectionality theory, this study explores the relationships between informal caregiving strains and gender, race, and income, along with various control variables, including age, marital status, education, number of hours spent providing care, and employment status. Data from the 2015 Caregiving in the US survey (N = 1248) were used. Results: Findings indicated male informal caregivers reported more financial strain compared to females. White women reported more emotional strain than women of color, and those with higher incomes reported less financial strain. Gender, race, and income were not significantly related to physical strain among informal caregivers. Conclusions: Implications, limitations, and suggestions for future research are discussed. 

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Informal caregivers’ quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review

Objectives: Globally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers. Methods: Following the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted. Results: Of the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: “challenges of caregiving”. In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: “self-adjustment” and “seeking for formal and informal support”. Conclusions: Cancer caregiving influences informal caregivers’ QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers. 

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Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties

Background: Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Methods: Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Results: Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. Conclusion: It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers.

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Informal Care of Dependent Older People—Support Services and Funding Schemes

This chapter is dealing with aspects regarding informal care of dependent older people. Based on the analysis of the information obtained from the good practice and the informal care regulatory status in Romania, the authors proposed a set of support services and funding schemes that could be implemented in our country as follows: care leave and care allowance; palliative care leave; prolonged care leave; the employment of a personal assistant under the terms of the Framework Law no. 153/2017; allowance for long-term care; pension for severe dependence; flexible working arrangements for the informal caregiver; the possibility of early retirement up to 2 years before reaching the standard retirement age, without penalizing the amount of pension rights; respite care. The methodology was based on the good practices research, using qualitative and quantitative information from bouth primary and secondary sources of information.

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Informal care in the context of long-term health care for the elderly in Slovenia: A qualitative study

Background: Slovenia is an aging society. Social security expenditures for the elderly are rising steadily, and the majority of Slovenians are firmly convinced that the state must provide elder care. This situation means that informal caregivers face many challenges and problems in their altruistic mission. Objectives: To explore the experiences and feelings of informal caregivers and to provide an understanding of how informal caregivers support the elderly and what challenges and difficulties they face in Slovenian society. Methods: The study is based on qualitative semi-structured interviews with 10 caregivers. In addition to descriptive statistics, we conducted a qualitative study using the qualitative content analysis method. Findings: We identified four themes among health caregivers’ experiences with challenges and problems in providing long-term health care for the elderly. Caregivers pointed out that they are mostly left to themselves and their altruistic mission of giving informal long-term care to their elderly relatives and friends. Systemic regulation of the national public health care system is the source of many problems. Other social systems determine and limit the position of informal caregivers in Slovenia. Conclusions: This qualitative study should be understood as useful stepping-stone to future research and real improvement in this area.

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Informal care and the impact on depression and anxiety among Swedish adults: a population-based cohort study

Background: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers. Methods: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18–65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression. Results: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63–2.47 for depression; aOR 2.07, 95% CI 1.57–2.74 for anxiety) compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27–3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06–3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. Conclusion: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.

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Influence of gender determinants on informal care and health service utilization in spain: Ten years after the approval of the equality law

Background: The existence of gender inequalities in health, in the use of health services, and in the development of informal care has been demonstrated throughout scientific literature. In Spain, a law was passed in 2007 to promote effective equality between men and women. Despite this, different studies have shown that the previous gender inequalities are still present in Spanish society. Objectives: For all these reasons, the objective of this paper is to study the differences by sex in informal care and in the use of emergency care, and to identify the existence of gender inequalities in Spain 10 years after the adoption of the aforementioned equality law. Methods: In this case, we development a cross-sectional study based on the 2017 Spanish National Health Survey of the Spanish population aged 16 and over. To analyze the influence of gender determinants on informal care and emergency care utilization, logistic regressions were performed, model 1 was adjusted for age, and model 2 was further adjusted too by the variables of the Andersen care demand model. Results: The results showed that informal care and the use of the emergency care continues to be higher in women than in men. Informal care in women was related to a higher level of education. In emergency care, the older the age, the lower the probability of utilization, and living in a rural municipality was related to a higher probability of utilization for both sexes. Conclusions: Finally, we concluded that there is still a need for studies that analyze gender inequalities in different contexts, such as the informal care and the use of health services. This is especially relevant in Spain, where economic changes have led to a change in roles, mainly for women, and new management strategies are needed to achieve equity in care and effective equality between men and women. 

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The Influence of Family Caregivers’ Experience of Interprofessional Care on Their Participation in Health Checkups as Preventive Health Behavior in Japan—A Cross-Sectional Analysis

Background: The role of family caregivers has been vital, especially in superaging societies like Japan’s. The caregivers’ experience of interprofessional care is a key aspect in their evaluation of the quality of integrated care. We sought to explore whether family caregivers’ experience of interprofessional care is associated with their own participation in health checkups as preventive health behaviors. Methods: We used cross-sectional data obtained during the development of the Japanese version of the Caregivers’ Experience Instrument (J-IEXPAC CAREGIVERS). Participants who had provided care for at least one year were surveyed (n = 251). We assessed family caregivers’ experience of interprofessional care using J-IEXPAC CAREGIVERS and their participation in health checkups. Results: Multivariate logistic regression analysis revealed that the J-IEXPAC CAREGIVERS total score was significantly associated with the caregivers’ participation in health checkups [odds ratio per 1-point increase = 1.05; 95% confidence interval 1.01–1.09]. Two domain scores (attention for the patient and attention for the caregiver) of J-IEXPAC CAREGIVERS were significantly associated with the outcome. Conclusions: Family caregivers with more positive experiences of interprofessional care were more likely to participate in health checkups. These results support the significance of family caregivers’ experience of care, which may promote preventive health behaviors.

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The Influence of Confucianism on the Perceptions and Process of Caring Among Family Caregivers of Persons With Dementia: A Qualitative Study

Background: Scant evidence reveals the influences of Confucianism on family caregiving in dementia. The purpose of this study was to explore the influence of Confucianism on the perceptions and process of caring among the Chinese family caregivers. Method: A qualitative study was conducted using semistructured interviews with 15 Chinese family caregivers of persons with dementia in three elderly care centers in Hong Kong. The interviews were audiotaped and transcribed, while a thematic analysis was performed to analyze the transcript at the latent level. Results: Three themes emerged from the interviews: (a) setting family as a top priority, (b) growth and development in families, and (c) enhancing family relationships. Discussion: Our findings provided insights into how Confucianism influences the experience of family caregivers in caring persons with dementia in Chinese communities. These findings help develop culturally adapted interventions to improve the support for family caregivers of persons with dementia.

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Influence of a Child’s Cancer on the Functioning of Their Family

Background: A child’s cancer affects their entire family and is a source of chronic stress for a sick child, as well as for their parents and siblings. It deprives them of the feeling of security; introduces uncertainty, fear and anxiety; and destabilises their life. It mobilises the family since they have to reconcile the treatment and frequent appointments at the hospital with the hardships of everyday life. The emotional burden they have to deal with is enormous. Recognition of the needs of such a family allows for the implementation of support, psychosocial care and psychoeducation, as well as the provision of reliable information. Patients and Methods: A population survey was conducted between 2015 and 2020. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems and needs. Results: All respondents in their legal status were parents of children with cancer. The study included 800 people, where women accounted for 85% and men accounted for 15%. The mean age of the mother was 38.09, SD = 7.25, and the mean age of the father was 41.11, SD = 7.03. The occurrence of problems negatively correlated with both the age of the parents (p < 0.0001) and the level of education (p < 0.0001). Parents who admitted having financial problems more often reported problems of a different kind; moreover, financial problems were more often reported by parents of children who were ill for a longer time (p = 0.01). Conclusions: Parents of children suffering from cancer reported numerous psychological, social and somatic problems. The identification of problems through screening should translate into specific interventions, thus creating support for the families of children with cancer. Promoting coping with difficult emotions and the ability to solve problems when a child is ill has a positive effect on the functioning of the family.

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The importance of familiarity with caregiving for public caregiver stigma: Evidence from a cross-sectional study in Germany

Objectives: This study aimed to investigate the association between familiarity with caregiving and public stigma towards informal caregivers of older individuals. Material and methods: The sample for this Online-Survey was identified using a quota-system based on German micro census data (N=1037; aged 18 years and older, living in Germany). Familiarity with caregiving was assessed by asking whether the participant has experience in or has friends or relatives with experience in informal or professional caregiving for individuals aged 65 years or older. Public caregiver stigma was assessed by analyzing the emotional, behavioral and cognitive reactions towards caregivers as described in a vignette. Results: Adjusted regressions analyses indicated that experience in providing informal care was associated with increased appreciative feelings and statements, and decreased social distance. Experience in providing professional care was associated with increased devaluing statements. Having friends or relatives who have experience in informal caregiving was associated with decreased social distance. Having friends or relatives who have experience in professional caregiving was associated with decreased devaluing feelings, increased appreciative feelings and decreased social distance. Conclusions: Results indicate that familiarity with caregiving, through one's own informal care experience or through contact with informal or professional caregivers, reduced public stigma towards informal caregivers. Moreover, experience with informal care or contact with professional caregivers increased appreciation of informal caregivers. However, increased negative stigmatizing statements were indicated among participants with experience in professional caregiving. Fostering contact and cooperation between informal caregivers and non-caregivers, as well as with professional caregivers may help reduce stigmatizing reactions. 

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Importance of Day-Care Centers in Dementia Care: A case Study From India

The caregivers of persons living with dementia (PLwD) have to provide full-time caregiving to the individual, in addition to other responsibilities in their own life. Providing care to a PLwD affects their quality of life and mental health. In such a context, clinicians have to guide caregivers in decreasing caregiver's burden through appropriate referrals. Day-care centers can be one such service, which is illustrated with the support of a case here.

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The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used. Respondent’s demographic, socioeconomic, health, and caregiving-related characteristics were described using complex samples analysis. Logistic regression analysis was performed to examine the factors affecting health, daily and social activities of caregivers, accounting for caregiving intensity. Results: Five point one percent of adults in Malaysia provided informal care. High intensity caregivers were more likely to be actively employed and provided longer duration of care compared with low intensity caregivers. For low intensity caregiving, females, those aged 35–59 years, and those with long-term condition were more likely to have negative effects on health. Daily activities of non-Malays were more likely to be affected, while no factor was found significantly associated with effect on social activities. For high intensity caregiving, caregivers aged 60 and over, those received training and those without assistance were more likely to have negative effects on health. Daily activities of those without assistance were more likely to be affected. Social activities of non-Malays, those received training and those providing care for 2 years or more were more likely to be affected. Conclusions: Our study indicates that both low- and high-intensity caregivers have common features, with the exception of employment status and care duration. Caregiving, regardless of intensity, has a significant impact on caregivers. In order to reduce the negative consequences of caregiving responsibilities, all caregivers need assistance from the community and government, that is customised to their needs. By addressing the factors contributing to the negative effects of caregiving, a continuation of informal caregiving can be sustained through policies supporting the growing demand for informal care necessitated by an ageing population and higher life expectancy in Malaysia.

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Impact of Social Isolation on People with Dementia and Their Family Caregivers

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries. 

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Impact of relative mental illness on caregivers

Introduction: Belarus is undergoing legislative shifts towards community-based mental health care. Responding effectively to support this process requires an understanding of the experiences and challenges facing families caring for a relative affected by mental illness. Objectives: To identify how caring for a person with severe mental illness impacts on family carers, and what carers identify as their support needs. Methods: Semi-structured interviews were undertaken with 17 caregivers of people affected by severe mental illness (diagnosis of F06.8, F20, F25, F7, and/or F 84) in Belarus between March - June 2019. Results: Care-giving for a family member was usually undertaken on a full time basis with no option for respite. Whilst caring did, in cases, strengthen family solidarity, it also resulted in intensive stress and burnout, financial pressures, and high levels of family tension, exacerbated when the person living with mental illness was perceived as a potential safety risk. High levels of societal stigma meant that care-givers commonly felt unable to discuss their circumstances, travel in public spaces, or participate in community activities. Stigma also deterred carers from seeking professional support. Priorities for support amongst carers included better information, public awareness raising and sensitization, advocacy to support patient integration into social and economic life, peer support and respite for family carers, and an increase in mental health specialists. Conclusions: Caregiving affected family carers on multiple levels with predominantly negative consequences. Priorities identified by carers need to be considered and acted upon if community-based care is to become an effective option.

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The impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure: A systematic review and meta-analysis

Background: Heart failure is a global health care problem that causes a significant economic burden. Despite medical advancements, it's prognosis remains poor as many patients with heart failure experience symptoms that negatively impact Quality of Life. Caregivers are often responsible for helping and supporting family members manage their heart failure symptoms at home. In addition to managing their own medical problems and maintaining social and personal lives, significant burden and stress can occur. At present, caregivers receive little guidance or information to support them in their caregiving role. Objectives: This review aims to determine the impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure. Design: Systematic review and meta-analysis. Data source Five electronic databases: PsycINFO, Medline, CINAHL Plus, EMBASE and SCOPUS were searched from June 2007 to August 2019. Review methods The conduct and reporting of this review was based on the Cochrane Handbook for Systematic Reviews of Interventions and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The Cochrane Risk of Bias Tool was used to assess the risk of bias amongst randomised controlled trials, and the Newcastle Ottawa Scale was used to assess risk of bias in one quasi-experimental study. Results: Ten articles met the inclusion criteria, consisting of seven studies, with a total sample size of 953 participants. The pooled result from two studies, conducted in America and China, reported that psychoeducational interventions significantly reduced depression at six months' follow-up (SMD -0.82; 95% CI -1.17 to -0.47; p = 0.73, I2 =0%). The pooled result from two studies conducted in Sweden and Taiwan showed a significant improvement in heart failure knowledge at six months' follow-up (SMD 0.97; 95% CI 0.70 to 1,25; p < 0.00001, I2 =0%). Finally, pooled results from three studies conducted in Sweden, China and Taiwan found a significant improvement in Quality of Life at 3 months' follow- up (SMD 0.25; 95% CI 0.25 to 0.48; p = 0.03). The three most common intervention components included: group based educational sessions, telemonitoring and telephone support, and written resources. Conclusions: There was no specific type of psychoeducational intervention found to have a significant impact on caregiver outcomes, as interventions were heterogeneous consisting of multiple components. Further research is needed to determine the effectiveness of individual and combined components to identify the ideal intervention format and design for caregivers of patients with heart failure.

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The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis

Objective: Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Methods: Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers. Results: Nine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment‐related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and “survivor guilt.” Conclusions: Our results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.

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Impact of medical home-consistent care and child condition on select health, community, and family level outcomes among children with special health care needs

Objectives/Methods: Using the 2009/2010 National Survey of Children with Special Health Care Needs (CSHCN), we investigated the impact of medical home-consistent care and child condition on five outcomes for CSHCN (n = 32,299). Results: Models suggested that medical home-consistent care predicted increased odds of preventive services receipt, no unmet health or family support needs, ease of use of community-based services, and shared decision-making. Despite these positive effects, disparities persisted based on insurance, condition complexity, and household income. Conclusions: These findings illustrate the positive impacts of medical home-consistent care on children yet remind health professionals of the unique family circumstances that ultimately impact health and wellbeing.

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The Impact of Long-Term Care Policy on the Percentage of Older Adults With Disabilities Cared for by Family Members in China: A System Dynamics Simulation

Background: This study examined the impact of current and future long-term care (LTC) policies on the family caregiving burden in China. System dynamics (SD) methodology was used to construct an LTC delivery system model that simulates the demand of LTC, living options, and LTC service use for disabled older adults. Methods: The model was based on three policy variables including the proportion of payment from LTC insurance, the growth rate of beds in LTC institutions, and the time to adjusting the capacity of community-based care. Results: Results showed that the percentage of older adults with disabilities cared for by family members was projected to increase from 92.6% in 2015 to 97.8% in 2035, assuming no policy changes; under the mixed policy scenario, this percentage would reduce significantly to 63.8% in 2035. Conclusions: These findings illustrate that changes in LTC policy and delivery system have a significant impact on family care.

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Impact of COVID-19 on the Mental Health and Well-Being of Latinx Caregivers of Children with Intellectual and Developmental Disabilities

Background: The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. Methods: In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD. Results: Specifically, we (1) identified which social determinants of health are correlated with maternal caregivers perceived general health, mental health, and well-being; (2) explored the impact of the pandemic on families’ overall eating and physical activity routines; and (3) identified emergent themes from caregivers’ experiences during the pandemic. Thirty-seven Latinx caregivers participated in three interviews in which several validated instruments were administered. The results indicated that perceived social support, annual family income, food security, and receipt of financial benefits were correlated with fewer depressive symptoms. Annual family income was also significantly correlated with perceived general health. Most caregivers reported that the pandemic had placed a strain on their economic situation; increased their isolation; and disrupted their child’s therapeutic supports, online education, eating routines, and engagement in physical activity. Meanwhile, some caregivers reported positive changes as a result of the pandemic. Conclusions: Implications for future research and practice are discussed.

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Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic. 

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Impact of Alzheimer’s Dementia on Caregivers and Quality Improvement through Art and Music Therapy

Background: Dementia is a general term for a series of medical conditions that affect the brain and evolve progressively. According to the literature, there are over 200 subtypes and causes of dementia, with Alzheimer’s disease (AD) being the most common in elderly people. AD is an irreversible progressive neurodegenerative condition that leads to a decline in mental function, enough to disrupt daily life. Thinking skills slowly deteriorate, which, in advanced stages, makes it impossible to perform simple tasks. Besides the change in the quality of life of AD patients and their families, there is a considerable alteration in the quality of life of their caregivers, whose health can be negatively affected by the development of mental and somatic disorders. Methods: This article reviews the literature in order to reveal the benefits of applying non-pharmacological interventions such as music and art therapy to improve quality of life. This article also aims to shed light on the impact of this disease on the caregiver’s life. Findings: Music and art therapy have produced reliable results in the treatment of patients with AD, and the best effects are related to increased socialization and the maintenance of social status.

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Identifying the Unmet Supportive Care Needs, with Concomitant Influencing Factors, in Family Caregivers of Cancer Patients in China

Objective: The objective of the study is to assess the unmet needs of cancer caregivers and to identify the possible predictors of their supportive care needs in China. Methods: This multicenter, cross-sectional study enrolled 449 cancer patients' family caregivers' dyads. Patients provided general information and Karnofsky performance status (KPS); caregivers provided general information and completed a survey of Chinese version of the Supportive Care Needs Survey-Partners and Caregivers Scale. The independent samples t-test, one-way analysis of variance, and multiple stepwise regression were used to analyze the factors that influence the needs of caregivers. Results: A proportion of caregivers who had no needs were 5.6%. A proportion of caregivers with ≥ 5 moderate or high unmet needs and with ≥ 10 moderate or high unmet needs were 77.7% and 63.2%, respectively. Healthcare services and information needs and communication and relationship needs were the most prominent areas of caregivers' unmet needs. The item "Finding out about financial support and government benefits for you and/or the person with cancer" was the highest level of unmet needs at 78.6%. The level of unmet needs was related to the patient's physical function (KPS score), caregiver's educational levels, financial burden of healthcare, as well as the level of burden related to caregiving (working status, caring for others, caregiving experience, and total caregiving time). Conclusions: The level of unmet needs of family caregivers of cancer patients in China was higher. In clinical practice, more attention should be paid to family caregivers who take care of the patient with poor physical function, those who are highly educated, faced with higher financial burden of healthcare, and are currently working, as well as those who need to take care of others, spend more time caregiving, and have no caregiving experience.

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"I Wish I Could Die So I Would Not Be in Pain": A Qualitative Study of Palliative Care Needs Among People With Cancer or HIV/AIDS in Vietnam and Their Caregivers

Background: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress-including sadness, depression, worry, and a feeling of having no future-was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings: highlighted patients' and family caregivers' desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.

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'I try my best ... I try to relieve the burden of my mum': a narrative analysis of the everyday care-giving experiences for five intergenerational Singapore-Chinese families where one member has dementia

Background: Singapore is experiencing a rapid growth in its ageing population with most of the islands' inhabitants living in high-rise apartments due to the scarcity of land. The Chinese community living in Singapore comprises the largest ethnic group and they are more likely to live together under one roof in an intergenerational family grouping. Currently, there are gaps in understanding intergenerational Singapore-Chinese families and their approach to caring at home for a family member with dementia. Objectives: The aim of this longitudinal qualitative study was to understand better this everyday care-giving experience. Methods: Using semi-structured biographical interviews and digital photographs to elicit family stories, five intergenerational Singapore-Chinese families were visited at home for a period of between six and 15 months. Each recruited intergenerational family was treated as a 'case'. Narrative analysis of the data was applied within and between cases and resulted in the emergence of three themes that represented various dynamics in the data. Findings: The three themes were identified as: (1) family values, which is about the cultural context in which everyday care takes place, the religious beliefs and practices of the intergenerational Singapore-Chinese families, and the practice of filial piety; (2) family support, which is about everyday access to family and service networks, including the contribution of the live-in maid in caring for the family member with dementia; and (3) family bonds, which is about the maintenance of intergenerational family relations in the Chinese family kinship system.

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I heard it on the radio: supporting Pacific family carers through the development of culturally appropriate resources, a descriptive qualitative study

Background: New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Objectives: Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. Methods: This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. Findings: The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.

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"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme. Method: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. Results: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. Conclusion: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. 

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“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

Background: Public health and care policies across OECD (Organisation for Economic Co-operation and Development) countries increasingly encourage aging in place, enabled by both formal care networks, and informal (family) care and social solidarity in the neighborhood. However, little is known about how a person’s neighborhood might affect their aging in place. The COVID-19 crisis unintendedly offered a good opportunity to observe the neighborhood’s role in the provision of care. Since formal care services were often limited during the lockdown, informal caregiving may have increased. However, intergenerational contacts in and outside of the household were strongly discouraged by governments worldwide, adding another layer of complexity to caregiving. Objectives: The aim of this qualitative study was to assess how informal caregivers in Flanders managed to provide care to their care receivers, and what role the neighborhood played in this provision of care. Methods: Sixteen qualitative Skype and telephone interviews with informal caregivers were conducted between June and December 2020 to understand their experiences and coping strategies. Findings: Overall, most respondents increased their frequency of caregiving during the first lockdown. They took on the extra care needs during the lockdown themselves, and did not actively invoke any kind of neighborhood support. The significance of the neighborhood seemingly remained limited. This was often not because no help was offered, but rather due to a sense of pride or the fear of infection, and an increased effort by family caregivers. 

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How Transitions in Dementia Care Trajectories Affect Health Problems in Partners: A Longitudinal Analysis With Linked Health and Administrative Data

Objectives: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices. EHRs were also the data source on their health problems, which were linked to the Dutch population registry and health administration data with demographic characteristics, date of institutionalization, and date of death. Differences in the prevalence of 16 groups of health problems and of specific health problems in partners during the year before and the year after the 3 transitions were examined using a generalized estimating equation. Results: About 1,110 partners of persons with dementia were identified. Problems related to the illness and/or loss of the person with dementia were significantly more prevalent in the year after the dementia diagnosis (32% vs. 17%) and in the year after the death of the person with dementia (59% vs. 41%) than in the years before. Unspecified health problems were more prevalent in the year after the diagnosis than in the year before (30% vs. 22%). After institutionalization, an increase was found in digestive problems and urological problems (30% vs. 18% and 24% vs. 17%). Conclusions: Transitions during the dementia care trajectory, namely, the diagnosis, institutionalization, and death of the person with dementia, significantly affect the cohabiting partner's health.

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How do middle-aged chinese men and women balance caregiving and employment income?

Background: Unpaid family caregivers might suffer losses in income as a result of care provision. Methods: Here we used data from the baseline survey of the China Health and Retirement Longitudinal Study to assess the relationship between hours of weekly caregiving provided to grandchildren/parents/parents-in-law and individual’s monthly employment income. Our study sample comprised 3718 middle-aged Chinese adults who were of working age (45–60 years). For women and men separately, we used a likelihood-based method to determine a caregiving threshold in a two-stage Heckman selection procedure. Instrumental variables were used to rule out the endogeneity of caregiving hours. Results: Our analysis revealed a negative association between caregiving and income for women that depended on a caregiving threshold of 63 h per week. There was an absence of caregiving-income relationship among men. Conclusions: These results offer new insights into the opportunity costs of unpaid caregiving and support tailored policies to protect the financial well-being of female caregivers. 

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Home Visit Based Mindfulness Intervention for Vietnamese American Dementia Family Caregivers: A Pilot Feasibility Study

Background: Healthcare disparities continue to exist among the Vietnamese American (VA) community and many factors (e.g., fear of social stigma) deter family caregivers of persons with dementia (PWD) from seeking assistance. Purpose: To pilot-test a language-specific and culturally appropriate mindfulness intervention to improve dementia VA family caregiver well-being. Methods: Bilingual, trained research assistants administered a mindfulness exercise (i.e., deep breathing) to family caregivers and provided continuous support and care resources through weekly home visits for a month. Weekly surveys measured changes in emotion, feelings of connectedness to the PWD, and mood (i.e., happiness) before and after the intervention. Results: A total of nine VA family caregivers of PWD participated in this pilot study. Positive affect showed an increasing trend (Mpre = 16.0 (SD = 3.48), Mpost = 17.1 (SD = 3.06)) and negative affect showed a decreasing trend (Mpre = 6.44 (SD = 3.31), Mpost = 5.22 (SD = 0.359)). Happiness showed an increasing trend (Mpre = 4.30 (SD = 0.767), Mpost = 4.44 (SD = 0.873)). Conclusions: These findings suggest that a home-based dementia family caregiver intervention with mindfulness exercises may potentially increase positive affect and decrease negative affect in Vietnamese American family caregivers of PWD. Similar interventions may help reduce caregiver burden in dementia family caregivers of other cultures.

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Health Promotion Behavior among Older Korean Family Caregivers of People with Dementia

Background: People adopt health promotion behaviors to promote their health as they interact within the environment. Objective: The purpose of this study was to examine factors influencing health promotion behaviors among older adults caring for family members with dementia. Methods: For this cross-sectional study, data from 135 older adults who were the main caregivers were collected at an outpatient clinic at a university hospital in the capital city of South Korea between September and October in 2020. Sociodemographic characteristics, caregiver-related characteristics, dementia knowledge, fear of dementia, and health promotion behaviors were measured. Results: Univariate analysis revealed that the level of health promotion behaviors differed by age, sex, educational level, monthly income, relationship with the family member with dementia, and cohabitation with family members with dementia. In the multivariate analysis, a hierarchical multiple regression model explained 33.9% of the variance. Sex, duration of caregiving, use of long-term care service, and fear of dementia predicted health promotion behavior. Conclusion: A strategic tailored care plan for target population is needed to improve the health promotion behavior of older adults caring for family members with dementia.

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Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study

Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake. Methods: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018–2020). Thematic analysis was used. Results: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non‐verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective. Conclusion: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs. Impact: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity.

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Gendered caregiving and structural constraints: An empirical ethical study

Background: The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential. Objectives: To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences. Research design: This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry. This article focused on three cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.  Approval was obtained from the university ethics committee. Findings: The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers. Conclusion: This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people.

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Gender, Class and the Cost of Unpaid Care: An Analysis of 25 Countries

Background: This article examines the relationship between gender, class and unpaid care for children and elderly household members across twenty-five countries. Methods: Using the microdata files of the 2015–2017 Luxembourg Income Study, we demonstrate that household income quintile shapes the relationship between resident caregiving and a) women's diminished share of household income and b) the associated "wage penalty" women experience in paid employment, examining dual-headed heterosexual households and grouping countries at varying levels of GDP per capita. Results: Our analyses demonstrate that both eldercare and childcare have a negative impact on women's economic outcomes, yet the effects of both types of unpaid care vary across class. Overall, childcare has a larger impact for women in lower income households, while eldercare has a larger impact for women in higher income households. However, the wage penalties experienced by wealthier women due to either type of potential care responsibilities are considerably less than those experienced by women in poorer households. Conclusions: Together, these data suggest that unpaid resident caregiving has effects that are both highly gendered and highly classed, leading to intersectional disadvantages for women performing unpaid care within poorer households across countries, and with effects that, in some cases, are further amplified within low-GDP countries. 

 

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Formal and Informal Care: Complementary or Substitutes in Care for Elderly People? Empirical Evidence From China

Background: To integrate the care resources of the elderly, while promoting the development of formal social care resources, some countries have gradually turned to the development of family informal care resources. In China, informal family care has a more important role, whereas social formal care resources are far from meeting the needs of older people. Thus, this strategy can only be effective if there is a clear complementary relationship between informal care and formal care. Methods: Empirical analysis is selected from the China Health and Nutrition Survey (CHNS) database, which conducted 10 follow-up surveys in 12 provinces and municipalities in China. A two-tier stochastic frontier (TSFA) model was used to analyze the relationship between three different kinds of formal care and informal family care. Results: The formal complementary and substitute effects on informal care eventually led to higher actual informal care level. The net effect of formal care on informal care is positive, and the complementary effects of formal care are still dominant even in different regions. Conclusions: Increasing informal care does not crowd out or reduce formal care; thereby, facilitating the return of care to families can effectively reduce public service expenditures. 

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‘Food for Life and Palliation (FLiP)’: a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia

Objectives: With ‘eating’ posited as Singapore’s domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the ‘food voices’ of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications. Setting: Homes of patients within the Singaporean palliative care setting. Participants: A subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families. Results: Framework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment. Conclusions: Clinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

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Family relations of older people: Personal and practical support

Summary: In this study, we examined older people's views and experiences of family relations in Iceland. Objectives: The goal was to explore the frequency and kinds of contact, and the support older people received from their adult biological children and stepchildren. Methods: We performed cluster sampling covering community centers in municipalities nationwide in Iceland. The questionnaire was answered by 273 older people, including 193 women (75%) and 64 men (25%). The average age was 79 years. About 200 (74%) lived in the capital area of Reykjavik, while 70 (26%) lived in the countryside. Findings: Older people received more support from biological children than stepchildren. Specifically, differences were found in both frequency and quality of contact. The results revealed gender differences; daughters offering more help and support than sons. Older women have more frequent contact and closer relationships with their biological children than with other children. Relationships with stepchildren were weaker in all respects. These results are discussed in connection to structural and cultural factors, with a focus on the implications of changes in family structure, new communication styles, and effects of media. Applications: Although the increased frequencies of divorce and stepparenting can affect connections within families, communities commonly disregard the different needs of stepfamilies, sometimes called "stepblindness". Policy makers and professionals such as social workers need to concede different needs of older people in stepfamilies. Conclusions: Conclusions are drawn from the perspective of welfare policy issues, such as the need of more precise law provisions and implementations on social services for families.

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Family members of Veterans with mental health problems: Seeking, finding, and accessing informal and formal supports during the military-to-civilian transition

Introduction: For some Canadian Armed Forces Veterans who are released, the military-to-civilian transition (MCT) process may be complicated by significant mental health problems (e.g., posttraumatic stress disorder, depression, anxiety). Family members (i.e., spouses, adult children, parents) who serve as the primary caregivers for Veterans with mental health problems devote significant energy to seeking and finding social support as they navigate the MCT. Objectives: The primary purposes of this qualitative study were to 1) hear from these family members and learn about the obstacles to and successes in accessing formal and informal social supports during the MCT and 2) understand how accessing such supports was affected by the Veteran's mental health problems. Methods: A sequential, multiple qualitative design was used, involving both in-depth individual interviews and focus groups with English- and French-speaking family members (N =36) living in Eastern, Central, and Western Canada (i.e., individual, n = 27; focus groups, n = 9). Data coding was facilitated through the qualitative data analysis sot ware MAXQDA, and data analysis was conducted using grounded theory strategies. Results: Amid numerous indicators of significant resolve and commitment to health, family members revealed significant issues (e.g., mental health stigma of the Veteran, caregiver burden and burnout) that contributed to notable barriers in accessing both informal (i.e., extended family, friends, online support groups) and formal (i.e., Operational Stress Injury Social Support, Military Family Resource Centres) support systems helpful in navigating the MCT. Discussion: Results are discussed in the context of how the Veteran's mental health compounded barriers for family members who sought to access informal and formal support services that would provide comfort, financial aid, respite, and counsel to the Veteran family in the MCT. Conclusions: Building on the resilience of military-connected families, gaps in the systems of formal and informal care are discussed in the context of how bold and creative changes (e.g., proactive signposting) might facilitate the MCT for Veterans with mental health problems.

 

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Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome

Background: Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Methods: Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Results: Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Conclusions: Individually tailored psychosocial support is needed.

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Family Focused Therapy for Family Members of Patients with Bipolar Disorder: Case Reports of Its Impact on Expressed Emotions

Background: Caregivers of patients with bipolar disorder (BD) undergo a considerable amount of burden. In India, family caregivers are the primary source of support and care for their ill relatives. The burden faced by family members of patients with BD often results in physical and mental health consequences. This may lead to negative interaction patterns such as hostility, criticality, and overinvolvement, termed as expressed emotions (EE). Methods: Here, we report how we addressed the EE in family members, using a single-subject design that involved the family caregivers (n = 2) of two adults who presented with a diagnosis of BD with a current episode of mania. Results: An assessment of family caregivers, using the family questionnaire, revealed high EE. Family focused therapy (FFT) of 12 sessions was delivered over 3–4 weeks on an inpatient basis, with positive outcomes of reductions in EE and family stress and improved psychosocial functioning in patient that were sustained over 9–10 months. Conclusions: FFT can be an important add on psychosocial therapy to reduce EE and stress and to facilitate functioning and communication. 

 

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Family factors and health‐related quality of life within 6 months of completion of childhood cancer treatment

Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. Methods: One hundred fifty‐four caregivers (of patients’ ages 0–18 years) and 52 youth (ages 7–18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment‐related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. Results: Family factors were associated with self‐ and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self‐reported neurocognitive difficulties and HRQL were not supported. Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.

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Family dermatology life quality index in patients with pemphigus vulgaris: A cross-sectional study

Background and Aims: Pemphigus vulgaris is a rare autoimmune intraepidermal vesiculobullous disease involving the skin and mucosa. It impacts the quality of life of both patients and their families. Methods: A total of 70 patients with pemphigus vulgaris (either outpatient or hospitalized) were enrolled using the simple sampling method between 2016 and 2017 from the dermatology clinic at Faghihi Hospital, Shiraz, Iran. A validated Persian version of the Family Dermatology Life Quality Index (FLDQI) questionnaire was filled by a family caregiver. The questionnaire contained 10 items assessing the quality of life of the family. Demographic variables were recorded in a separate form. Results: The mean age of the patients was 51 ± 11.3 years and that of the family caregivers was 32 ± 8.8 years. The FLDQI score was higher (poorer quality of life) if the patient was male, older, had shorter disease duration or had fewer disease recurrences (P = 0.046, 0.01, 0.001 and >0.001, respectively). Higher scores were also obtained in the less-educated caregivers (P = 0.026) but there was no association with either gender or age (P = 0.399, 0.1). Conclusion: Pemphigus vulgaris significantly affects the Family Dermatology Life Quality Index. Education and counseling of family caregivers by various support groups such as Pemphigus Family Associations could be effective in improving the quality of life of the caregivers.<bold>Limitations: </bold>This study did not assess the effect of comprising domain analysis, severity of disease, patients' Dermatology Life Quality Index (DLQI), mucosal involvement, response to treatment, outpatient or admitted status, socioeconomic status, or the quality of life among the various family members. 

 

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Family Caregiving During the COVID-19 Pandemic

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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Family caregivers of patients with Alzheimer's disease during the COVID‐19 journey

As is the whole world, we are also fighting the coronavirus (COVID‐19) pandemic in Turkey, which complicates and affects all aspects of life. The pandemic can negatively psychosocially affect every segment of society. To successfully get through this pandemic, it is important to consider all individuals in society, including ourselves. Patients with Alzheimer's disease are considered vulnerable, more helpless; they do not have the capacity to make the right decisions and they need the care and help of someone else. The needs of relatives who provide care for these patients may have been forgotten during this pandemic.

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Family Caregiver Partnerships in Palliative Care Research Design and Implementation

The article discusses the effectiveness of family caregiver partnerships in the design and implementation of pediatric palliative care (PPC) research. Also cited are the importance of the perspectives of family caregivers, clinicians and researchers in improving research, and the principles of patient- and family-centered research like honesty, cultural competency, and transparency.

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Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey

Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.

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Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda

Background: In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Methods: Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Results: Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Conclusions: Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.

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Family achievements in struggling with schizophrenia: life experiences in a qualitative content analysis study in Iran

Background: The challenges of living with and taking care of a patient with schizophrenia can lead to positive changes depending on the experiences and reactions of family caregivers. Such changes may directly affect the family performance and the patient’s recovery stage. Aims: Present study aimed to explain the positive experiences reported by family caregivers of patients with schizophrenia. Methods: The present study is a qualitative study of content analysis. Data were collected using semi-structured and in-depth interviews with 15 family caregivers of patients with schizophrenia referring to one of the psychiatric hospitals in Zahedan, Southeast part of Iran. Purposive sampling method was applied and data analysis was conducted using conventional content analysis proposed by Graneheim and Lundman. Results: Data analysis created a theme entitled “family achievements in struggling with schizophrenia”. This theme included four categories including Developing positive personality traits in family members, Strengthening family ties, developing insight into the life, and social mobility. Conclusions: The results provided insights that the experience of taking care of patients with schizophrenia led to positive consequences for family caregivers. Thus, it is recommended that psychiatrists or consultants help families rely on positive experiences and share these experiences with families with a newly-suffered patient.

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Faith-sensitive end of life care for children, young people and their families

This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the most prevalent religions within the UK. This article is intended to give points for discussion and consideration, but health professionals are encouraged to speak to every patient and family on an individual level to ensure an understanding of their personal beliefs. Although there is a range of literature discussing faith during end-of-life care, there is litte that outlines the practical specifics and for this reason some of the supporting literature in this article is dated and, where possible, this has been supported with contemporary sources.

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Factors related to the use of religious coping by informal caregivers: an integrative review

Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.

 

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Factors influencing scales of burden, coping mechanisms, and quality of life in caregivers of hemodialysis patients in Andhra Pradesh, India

Background: Evaluation of factors influencing scales of burden, coping mechanisms, and quality of life (QOL) in caregivers of hemodialysis (HD) patients may lead to the revision of interventions aimed at the betterment of QOL of caregivers of HD patients. In this study, we investigated the influence of demographic, social, and clinical variables on burden, coping mechanisms, and QOL in caregivers of HD patients. Methods: In this prospective study, 150 caregivers of HD patients were recruited. Assessment of burden, coping strategies, and QOL were made by the Zarit Burden Interview, Revised Ways of Coping, and Short Form-36 QOL. The role of age, gender, and social and clinical variables on these constructs was investigated using multivariate analysis of variance. Results: The mean age was 43.86 ± 1.11 years. Males outnumbered females. Most were Hindu, married, primary school educated, unemployed, spouses, caring the patients, and suffering from chronic diseases for <5 years. In multivariate analysis of variance, effect of age on physical functioning (PF), general health (GH), and physical component summary (PCS) score (P < 0.01); gender on burden, distancing, seeking social support, role limitation due to emotional problem, and pain (P < 0.05); role limitations due to physical health, energy/fatigue (EF), emotional well-being, PCS, and mental component summary (MCS) score (P < 0.01); religion on PF (P < 0.05); marital status on burden and GH (P < 0.05); PF and PCS (P < 0.01); relationship of caregiver with the patient on PCS (P < 0.05); EF and MCS (P < 0.01); and presence of chronic diseases on GH and social functioning (P < 0.01) were observed. Conclusion: The role of demographic, social, and clinical variables should be taken into consideration while initiating therapies for reducing the burden and improving the QOL of caregivers.

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Factors facilitating positive outcomes in community-based end-of-life care: A cross-sectional qualitative study of patients and family caregivers

Background: Delivery of community-based end-of-life care for patients and family members has been recognized as an important public health care approach. Despite differences in different healthcare settings and the significance of a person-centered approach, little research has investigated facilitators of community-based end-of-life care from the perspective of service recipients. In particular, there has been limited exploration of strategies to ensure positive outcomes at an operational level. Aim: To explore factors facilitating positive end-of-life care provision in community-based settings and how these are achieved in practice, from the perspectives of patients and family caregivers. Design: A qualitative cross-sectional descriptive study was undertaken through semi-structured interviews with patients and family caregivers subjected to thematic analysis. Setting/participants: Ten patients and 16 family caregivers were recruited from an end-of-life community care program provided by four non-governmental organizations in Hong Kong. Results: Seven core themes were identified: positive emotions about the relationship, positive appraisals of the relationship, care through inquiring about recipients’ circumstances, instrumentality of care (i.e. information, coaching on care, practical help, psychological support, multiple activities), comprehensiveness of care (i.e. diversity, post-death care, family-level wellbeing), structure of care (i.e. timely follow-up, well-developed system), and qualities of workers. Conclusions: Improvement in service quality might be achieved through alternating the perceptions or emotional reactions of care recipients toward care providers and increased use of sensitive inquiry. Comprehensive care and positive outcomes might be facilitated by addressing the dualities of care by providing diverse choices in pre-death and post-death care.

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Factors associated with post-traumatic stress disorder in family caregivers of psychotic patients

Introduction: An association can be found between patient with psychosis and perpetrating acts of violence. So, the caregiving role can impact negatively on psychosis carer psychological health and wellbeing. Objectives: The aim of this study was to identify the factors associated with post-traumatic stress disorder (PTSD) in family caregivers of psychotic patients following exposure to aggression. Methods: This cross-sectional study was carried out involving 95 family caregivers of psychotic patients followed in psychiatry. Data were gathered from caregivers about their experiences in providing care. Sociodemographic and clinical data of patients were collected from medical records.We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: The caregivers were male in 51.6% and with low educational level in 46.3% of cases. A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD. Decreased contact with patient (p=0.01), male gender (p=0.00), older age (p=0.00), living far from patient (p=0.00), parent relationship of caregivers (p=0.00), diagnosis of schizophrenia or schizoaffective disorder (p=0.00) and poor adherence to treatment (p=0.00) in affected relatives were associated with the presence of PTSD following exposure to moderate to severe aggression. Conclusions: These findings highlight the need for interventions to promote family psychoeducation and to provide psychosocial support for caregivers of patients in order to prevent the traumatic impact of violence on them.

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Factors associated with informal caregiving and its effects on health, work, and social activities of adult informal caregivers in Malaysia: findings from the National Health and Morbidity Survey 2019

Background: The increase in the elderly population, chronic and degenerative diseases, as well as accidents at work and on the road in Malaysia would result in an increased demand for informal care. This paper aimed to determine the associated factors of informal caregiving and its effects on health, work and social activities of adult informal caregivers in Malaysia. Methods: The data from the 2019 National Health and Morbidity Survey (NHMS), a nationwide cross-sectional survey with a two-stage stratified random sampling design, was used in this research. The study included respondents who were 18 years and older (n = 11,674). Data were obtained via face-to-face interviews using validated questionnaires. Descriptive and complex sample logistic regression analyses were employed as appropriate. Results: 5.7% of the adult population were informal caregivers. Provision of informal care were significantly associated with the female sex (OR = 1.52, 95% CI [1.21, 1.92]), those aged 36–59 years (OR = 1.61, 95% CI [1.15, 2.25]), and those who reported illness in the past 2 weeks (OR = 1.79, 95% CI [1.38, 2.33]). The risk of having their health affected were associated with female caregivers (OR = 3.63, 95% CI [1.73, 7.61]), those who received training (OR = 2.10, 95% CI [1.10, 4.00]) and those who provided care for 2 years or more (OR = 1.91, 95% CI [1.08, 3.37]). The factors associated with the effects on work were ethnicity, received training and had no assistance to provide the care. In terms of effect on social activities, female caregivers (OR = 1.96, 95% CI [1.04, 3.69]) and caregivers who received training were more likely (OR = 2.19, 95% CI [1.22, 3.93]) to have their social activities affected. Conclusion: Our study revealed that sex, age, and self-reported illness were factors associated with being an informal caregiver in Malaysia. Informal caregivers faced effects on their health, work, and social activities which may be detrimental to their well-being. This understanding is crucial for planning support for caregivers.

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Factors Associated with Health Check-up and Cancer Screening Participation among Family Caregivers of Patients with Dementia: A Cross-Sectional Study

Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels. 

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Factors associated with caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy: A cross-sectional study

Background: The number of patients on home mechanical ventilation (HMV) worldwide has been steadily rising as medical technological advanced. To ensure the safety and quality care of the patients receiving HMV with tracheostomy, caring behavior of family caregivers is critical. However, studies on caring behavior of family caregivers and its associated factors were remained unexplored. This study aimed to describe the caring behaviors of family caregivers for patients receiving home mechanical ventilation with tracheostomy and to identify factors associated with their caring behaviors. Methods: This was a cross-sectional study for 95 family caregivers for patients with invasive home mechanical ventilation in South Korea. Caring behaviors were assessed by the Caring Behavior Scale with 74 items with 5-point Likert scale. Data were analyzed using multiple regression analysis. Results: Caring behaviors score of caregivers was 304.68±31.05 out of 370. They were significantly associated with knowledge on emergency care (β = 0.22, p = .011), number of required instruments for care (β = 0.21, p = .010), frequency of home visit care (β = 0.19, p = .017), experience of emergency situation for the last six months (β = 0.19, p = .009) and activities of daily living of patient (β = 0.27, p = .002). Conclusion: Development of standardized multidisciplinary discharge education for improving the caring capacity of caregivers is required for successful and healthy application of home mechanical ventilation.

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Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore

Background: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. Methods: Two hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. Results: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. Conclusion: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.

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Factor analysis of the relationship between PANSS score and family burden of patients with schizophrenia

Objective: This study aims to investigate the burden of family caregivers of patients with schizophrenia, and its influencing factors. Methods: A total of 105 patients with schizophrenia and their caregivers were investigated using the positive and negative symptom scale (PANSS) and family burden scale of disease (FBS). Results: There was a strong correlation between the patient's recovery and family burden, especially between positive and negative symptoms and family financial burden, family daily activities, family recreational activities, and family relationship. Conclusion: There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities, and family relationship. Medical staff should pay attention to the psychological characteristics of patients and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities and family relationship. Medical staff should pay attention to the psychological characteristics of patients, and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. 

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Exposure to violence and risk of post-traumatic stress disorder in family caregivers of psychotic patients

Introduction: Family caregivers of psychotic patients are exposed to violence and stress. However, associated psychological outcomes are poorly characterized in this population. Objectives: The aim of this study was to clarify the relationship between violence directed towards caregivers of patients with psychosis and developing post-traumatic stress disorder (PTSD). Methods: Participants were family caregivers of psychotic patients (n=95). They completed a questionnaire assessing sociodemographic characteristics. Sociodemographic and clinical data of patients were collected from medical records. We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. Decreased contact with patient (p=0.00), male gender (p=0.00), older age (p=0.00) and parent relationship (p=0.01) of caregivers, diagnosis of schizophrenia or schizoaffective disorder (p=0,00) and poor adherence to treatment (p=0,00) in affected relatives were associated with experiences of moderate–severe aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD which correlated with the level of aggression (p=0.00). Conclusions: Our findings suggest that a large proportion of family caregivers of patient-initiated violence in psychosis reported experiencing a great distress and a high level of PTSD symptomatology. So, more attention should be paid to the support needs of caregivers who are faced with potentially life threatening aggressive behaviour by psychotic family members.

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Exploring the meaning of dignity at end of life for Chinese Canadians caregivers: A qualitative cross-cultural study

Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.

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Exploring the experiences of family caregivers with people with drug-resistant tuberculosis

Background: The South African health system faces major challenges: crumbling infrastructure, shortage of beds and health professionals, and a high burden of diseases such as Tuberculosis and HIV/AIDS. The emergence of Drug Resistant Tuberculosis has made matters worse, as some of the burden of care for patients was transferred from nurses at hospitals to families in communities after patient discharge. Objective: This study explores and describes experiences of family caregivers caring for family members with Drug Resistant Tuberculosis living at home. Methods: The data from purposively selected family caregivers, caring for family members living with Drug Resistant Tuberculosis, were collected through in-depth interviews using a pretested interview guide. Saturation was reached at the 11th interview. All interviews were audio-taped, transcribed verbatim, analysed using Tech’s Eight Steps for Data Analysis, and emerging themes reported. Findings: Three themes that emerged were: issues in relation to provision of care, caregiver’s attitudes towards caregiving, and community attitudes and practices towards family caregivers. The study showed that respondents experienced challenges such as buying and preparing of nutritious food, attending to hygiene needs and management of treatment of side effects. Poverty, finance and time were barriers to caregiving roles. Participants experienced physical and psychological exhaustion, social exclusion, and stigmatisation. Conclusions: There is a need to increase coverage of the Ward-Based Outreach Teams and Community Healthcare Workers, and intensification of TB and HIV/AIDS health education in communities. Training and education on infection control, palliative treatment, and home-based medical care should be provided to families before a patient is discharged. Stakeholder relations need to be improved and collaboration fostered. 

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Exploring the barriers to pulmonary rehabilitation for patients with chronic obstructive pulmonary disease: a qualitative study

Background: The complexity of chronic obstructive pulmonary disease (COPD) and its different physical, mental, familial, occupational, and social complications highlight the necessity of pulmonary rehabilitation (PR) for afflicted patients. However, PR for patients with COPD usually faces some barriers. The aim of this study was to explore the barriers to PR for patients with COPD. Methods: This qualitative descriptive study was conducted in January 2019 to October 2020. Participants were 19 patients with COPD, 11 family caregivers of patients with COPD, and 12 healthcare providers, who all were recruited purposively from two teaching hospitals in Isfahan, Iran. Data were collected through semi-structured interviews and were analyzed through conventional content analysis. Results: The barriers to PR for patients with COPD fell into three main categories, namely barriers related to patients and their families, inefficiency of PR services, and inappropriate organizational context for PR. Each category had four subcategories, namely patients' and families' lack of knowledge, complexity and chronicity of COPD, heavy financial burden of COPD, patients' frustration and discontinuation of PR, lack of patient-centeredness, lack of coordination in PR team, inadequate professional competence of PR staff, lack of a holistic approach to PR, limited access to PR services, inadequate insurance for PR services, ineffective PR planning, and discontinuity of care. Conclusion: PR for patients with COPD is a complex process which faces different personal, familial, social, financial, organizational, and governmental barriers. Strategies for managing these barriers are needed in order to improve the effectiveness and the quality of PR services for patients with COPD. 

 

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Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient–Caregiver Dyads—A Mixed-Methods Study

Methods: A parallel mixed-methods study on 20 patient–caregiver dyads in an Asian population was conducted to explore the differential perceptions and barriers to ACP in dementia. We recruited English-speaking patients with mild dementia and their caregivers. A trained ACP facilitator conducted ACP counseling. Patient–caregiver dyads completed pre–post surveys and participated in post-counseling qualitative interviews. We used mixed-methods analysis to corroborate the quantitative and qualitative data. Differential perceptions of ACP were reported among dyads, with caregivers less inclined for further ACP discussions. Post-ACP counseling, caregivers were significantly more likely to acknowledge barriers to ACP discussions than patients (57.9% versus 10.5%, p = 0.005). Results: Thematic analysis of the interview transcripts revealed four themes around barriers to ACP: patient-related factors (transference of decision making, poor cognition and lack of understanding, and dis-inclination to plan for the future), caregiver-related factors (perceived negative impact on the patient, caregiver discomfort, and confidence in congruent decision making), socio-cultural factors (taboos, superstitions, and religious beliefs), and the inappropriate timing of discussions. Conclusions: In a collectivist Asian culture, socio-cultural factors pose important barriers, and a family-centric approach to initiation of ACP may be the first step towards engagement in the ACP process. For ACP in dementia to be effective for patients and caregivers, these discussions should be culturally tailored and address patient, caregiver, socio-cultural, and timing barriers.

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Exploring dementia family carers’ self-initiated strategies in managing behavioural and psychological symptoms in dementia: a qualitative study

Objectives: Carer’s self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers’ BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers. Design: Qualitative study using thematic framework method. Setting: Community setting in Hong Kong. Participants: 16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement. Results: Six overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers’ distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers’ self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Conclusions: Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.

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Explanatory models of stroke in Ghana: perspectives of stroke survivors and their caregivers

Objective: This study examines explanatory models (EMs) of stroke and its complications among people living with stroke, and their caregivers, in two urban poor communities in Accra (Ga Mashie) and Korle Bu Teaching Hospital (KBTH), Accra. Methods: Twenty-two stroke survivors and 29 caregivers were recruited from 2 urban poor communities in Accra and KBTH. Qualitative data were obtained using semi-structured interviews that lasted between 45 minutes and 2 hours. The interviews were audiotaped, transcribed and analysed thematically, informed by the concept of EMs of illness. Results: Participants referred to stroke as a sudden event and they expressed different emotional responses after the stroke onset. Stroke survivors and their caregivers attributed stroke with poor lifestyle practices, high blood pressure, unhealthy diet and dietary practices, supernatural causes, stress, family history, other chronic diseases, and delay in treatment of symptoms. While the stroke survivors associated stroke complications with physical disability and stigmatisation, the caregivers associated these with physical disability, behavioural and psychological changes, cognitive disability and death. These associations were mostly influenced by the biomedical model of stroke. Conclusion: The biomedical model of stroke is important for developing interventions that will be accepted by the stroke survivors and the caregivers. Nevertheless, sociocultural explanations of stroke need to be taken into consideration during delivery of medical information to the participants. This study proposes an integrated biopsychosociocultural approach for stroke intervention among the study participants.

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Experiences of family caregivers with day-care centers for elders in Southern China: a qualitative study

Background: With its massive older population, China faces challenges related to elderly support and care. One of the proposed solutions is to diversify elderly support systems. Towards this goal, the establishment of day-care centres is a new Chinese endeavour. Methods: This qualitative study was conducted among the family caregivers of elderly residents enrolled in day-care centres in Shenzhen, a Southern Chinese city, to explore and understand the experiences and factors that might affect family caregivers of frail elders enrolled in day-care centres. Twenty participants were recruited from these centres. Data were collected through in-depth interviews and were analysed via thematic analysis. Findings: The three major themes were: 'I am a traditional person': the impacts of ren and xiao, 'caring made me tired': mobility and environment barriers, and 'I am not young': relaxation feelings of family caregivers. Conclusions: The findings indicated that the day-care centres presented both challenges and opportunities to family caregivers, and the psychological and cultural services at these centres must be further enhanced.

 

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The experiences of family caregivers of people with severe mental illness in the Middle East: A systematic review and meta-synthesis of qualitative data

Background: There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. Methods: A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). Results: The review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences. Conclusions: The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.

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Experiences of family caregivers of patients with borderline personality disorder of social stigma

Background: Social stigma is the most common and challenging burden of care on the family of people with Borderline Personality Disorder (BPD) In Iran, despite the cultural and social influences, this issue has been less studied. Therefore, present study was conducted to determine the lived experiences of caregivers of patients with BPD of social stigma. Materials and Methods: This qualitative study was performed at Ibn Sina hospital in Mashhad, Iran from 2017 to 2019. Participants were selected by purposive and snowball sampling method. Data were collected through semi-structured interviews. Data saturation was achieved after 16 interviews. Finally, the data were analyzed by the method proposed by Diekelmann (1989). Results: In data analysis, one main theme and two sub-themes emerged. The main themes include Black shadow. Two sub-themes consisted of society dagger and secrecy. The sub-theme of society dagger included the two common meanings (inner turmoil in response to the stigma of others and weakening of family status among relatives and acquaintances). The sub-theme of secrecy comprised of the three common meanings (concealment of disease, hide hospitalization, and seclusion). Conclusions: An understanding of the experience of family stigma can lead to the development of supportive strategies to manage this problem among caregivers of patients with BPD. Nurses can support caregivers by offering them opportunities to discuss how stigma is disrupting their caregiving roles. They can also support the caregivers in negotiating the experienced social and emotional distress and when necessary, refer them to the other members of healthcare teams. 

 

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The Experience of Working With a Faith Community Nurse Liaison of Care in a Primary Care Practice Among Older Adult Clients and Their Informal Caregiver

Background: Informal caregivers of older adults aging in place are at risk for adverse health and financial consequences. This descriptive qualitative study explored the experience of working with a faith community nurse (FCN) liaison of care in a Catholic health care system affiliated primary care practice among older adult clients and their informal caregiver. Methods: Semistructured face-to-face interviews were conducted with nine older adult client–informal caregiver dyads, three clients, and one caregiver (n = 22). Interviews were audio recorded, transcribed, and analyzed using Braun and Clarke's reflexive thematic analysis method. Findings: The analysis generated one overarching theme, I'm Sorry the Study and FCN Visits Are Coming to an End, and two key themes, The FCN Was Always There to Help Us (older adult clients) and The FCN Took the Pressure Off of Caregiving for Awhile (informal caregivers). Participants viewed the FCN as an instrumental member of their health care team and considered prayer and spiritual support offered by the FCN an essential element of care.

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'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis'

Introduction: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. Objective: This meta‐synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. Methods: A systematic review was performed in six databases, and 14 studies were included in this meta‐synthesis. Results: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end‐of‐life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. Conclusion: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi‐professional psychosocial care.

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Estimating Service Demand for Intermediary Care at a Community Integrated Intermediary Care Center among Family Caregivers of Older Adults Residing in Chiang Mai, Northern Thailand

Background: Thailand’s population is currently the third most rapidly aging in the world, with an estimated 20 million ageing population by 2050. Sustainability of the family based long-term care model is challenged by the chronic burden on family caregivers and by smaller family sizes. We aimed to introduce a new service model, Community Integrated Intermediary Care (CIIC), TCTR20190412004, including free of charge intermediary care services at CIIC centers in the local community, to help older adults whose caregivers are temporarily unable to sustain care at home. Since Thai society upholds values of gratefulness, it is better to estimate willingness to use such an intermediary care service first, before introducing the service. Methods: A total of 867 pairs of senior citizens and their family caregivers were interviewed with structured-questionnaires in 2019. Descriptive analysis and binary logistic regression were applied to determine the predictors of family caregivers’ willingness to use the CIIC service, guided by Anderson’s model of health services use. Results: About 26.8% of elderly participants and 24.0% of family caregivers were willing to use an intermediary care service. The family caregiver determinants of predisposing factors (kinship: spouse caregivers, other relatives, maid or friends; job types: own business and private company staff), enabling factors (original community residents and monthly income ≤9000 baht), and need factors (caregiver burden total scores ≥24, taking leave for caregiving, and having diabetes), were found to be significantly associated with willingness to use the CIIC service. Conclusions: The baseline survey data noted that caregivers’ sociodemographic factors and burden determined their willingness to use the intermediary care service, although the dependency of care recipients was low in this study. This, nonetheless, indicated that there is need for a backup respite care to strengthen current family based long-term aging care in Thailand.

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Empowering Families to Take on a Primary Caregiver Role for Patients with Cancer in India: Promising Strategies, Persistent Challenges, and Tradeoffs (SCI928)

Objectives: 1. Identify the challenges and trade-offs for family members assuming a primary caregiving role to patients with cancer nearing the end of life in India. 2. Consider strategies for supporting family members assuming a primary palliative caregiving role in India. Background As the population on the Indian subcontinent is aging, so too is the incidence of cancer and the need for access to palliative care. Research Objectives Identify provider perspectives on empowering patient family members to assume a palliative caregiving role. Methods: This is a secondary analysis from the PC-PAICE (Palliative Care- Promoting Access & International Cancer Experience) study where we captured the perspectives of 44 interdisciplinary providers from 7 geographically diverse palliative care sites throughout India using a semi-structured interview guide. We identified emergent themes using qualitative content analysis methods with team consensus. Results: Theme 1: Challenge: Cultural beliefs exist that handing off or sharing any primary caregiving is a "sin" and "if they don't take care of the patient then they have done some mistake." Theme 2: Trade-off: Caregivers are overwhelmed with navigating the expectation to take on the caregiver role, when they feasibly cannot, given financial and time constraints. Theme 3: Strategies: Facilitate caregiver buy-in to the idea of palliative care includes linking caregivers to financial resources (e.g. NGO sponsored income-earning opportunities "conduct rehabilitation camps where they teach the patient or the family to make some products"), connecting caregivers to mental health support, and working with caregivers in accommodating other constraints. Conclusion: In India, family members are already primed with the expectation to assume the role of palliative caregiver; this expectation in the face of financial constraints creates a challenging situation for caregivers. Implications for Research, Policy, or Practice: Striking the right balance of what family caregivers in India take on requires acknowledging the trade-offs they might make in other parts of their lives, empowering them through training and linkage to resources, and facilitating a cultural shift to accept palliative care or help from others. Future work should explore these provider themes in interviews with caregivers and patients themselves.

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Embarking to Caregiving Role: A Thematic Analysis of Malay Caregivers of Older Adults with Mental Health Problems Perspectives

Background: Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. Methods: This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. Findings: The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.

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Eldercare in Transnational Families and the Swiss Immigration Regime

International migration research increasingly addresses the complex mobility that occurs in transnational contexts. Authors who study ties between migrants and their parents often focus on money transfers and financial investments. However, exchanges within transnational families are broader and multifaceted, and include an important care dimension that is shaped by gendered and cultural social codes. Studies show that women are often engaged in caring for their older parents even from a great distance. They develop strategies to attend to the well-being of their parents, including relocating them in order to bring them in closer proximity. While the economic aspects of care work within transnational family networks are well-researched, we lack knowledge about the impacts of national migration regimes on the abilities of migrants to take care of the parents that they have left behind. This chapter points to some areas in need of conceptual development in addressing this gap. We draw on existing literature and legal documentation to explore how some legal contexts (e.g., selective immigration policies, limited family reunification) restrict care circulation within transnational families and tend to reinforce inequalities between advantaged and disadvantaged migrants, particularly women. We emphasise the need for research concerning transnational family care circulation that focuses more on South-North migrants whose economic and legal situations are particularly precarious.

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The Effects of Patients’ and Caregivers’ Characteristics on the Burden of Families Caring for Stroke Survivors

Background: Vascular strokes are the leading cause of long-term disability for adults. They impose high levels of burden on the patient, the family, and national healthcare systems worldwide. This study aimed to assess the effects of patients’ and caregivers’ characteristics on the perceptions of burden in families caring for a loved one living with stroke in Greece. Methods: Using purposive sampling, 109 dyads of patients and their respective caregivers were recruited from the Attica region. Patients completed a questionnaire that included personal characteristics and the Barthel Index, while caregivers completed a set of questionnaires—personal characteristics, revised Bakas Caregiving Outcomes Scale (BCOS), Personal Resource Questionnaire (PRQ 2000), and Center for Epidemiological Studies-Depression (CES-D). Results: Caregiving burden was linked to both patients’ and caregivers’ characteristics. A patient’s educational level, the number of family members living in the same house, the existence of equipment and facilities in the house, and the duration of provided care were associated with perception of greater burden. Regarding caregivers’ characteristics, those in good health had a significantly lower perception of burden. Higher PRQ 2000 scores were significantly associated with higher BCOS scores (less burden), and higher CES-D scores were significantly associated with lower BCOS scores (more burden). Conclusion: Caring for a loved one affected by stroke places a considerable burden on the caregiver. Systematic assessment and intervention strategies can help to identify caregivers at risk so that suitably targeted assistance may be provided.

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Effects of Caregiver Status, Coping Styles, and Social Support on the Physical Health of Korean American Caregivers

Purpose: This study investigated direct and indirect effects of caregiver status on the physical health of Korean American caregivers in terms of caregiver coping styles and the quantity and the quality of informal social support. Design and Methods: Using a sample of 87 caregivers and 87 matched noncaregivers, we analyzed a path model, employing both subjective (self-reported general health) and objective (blood pressure and cortisol levels) health indicators. For the intervening variables the path model employed coping styles and two aspects of social support (the quantity of informal social support and the quality of informal social support). Results: Our findings supported the association of caregiver status with poor health outcomes among Korean American caregivers. Of interest, the adverse effects of caregiver status on the physical health of caregivers were reported only with objective health markers (blood pressure and cortisol levels), not with subjective health indicators. The proposed indirect effects of caregiver status were supported only for cortisol levels, through the quality of informal social support. Implications: The demonstration of the physical health effects of caregiving in one of the nation's fastest growing ethnic groups, and the finding that these physiological effects occur without self-reported poor health, call attention to a potentially serious health problem in an understudied group providing family care to frail older family members. 

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Effects of an educational peer-group intervention on knowledge about dementia among family caregivers with a Turkish or Moroccan immigrant background: A cluster randomised controlled trial

Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. 

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The effect of socioeconomic status on informal caregiving for parents among adult married females: evidence from China

Background: Married female caregivers face a higher risk of an informal care burden than other caregivers. No study has explored the effect of socioeconomic status (SES) on the intensity of informal care provided by married female caregivers in China. The purpose of this study is to empirically examine how the SES of married female caregivers affects the intensity of the informal care they provide for their parents/parents-in-law in China. Methods: The data for this study were drawn from 8 waves of the China Health and Nutrition Survey (CHNS). The respondents were married women whose parents/parents-in-law needed care and lived in the same city as them. SES was defined based on four indicators: education, economic status, employment status, and hukou (China’s household registration system). Informal caregivers were divided into three categories: non-caregivers (0 h/week), low-intensity caregivers (less than 10 h/week), and high-intensity caregivers (10 h/week and above). Multinomial logistic regression analysis was used to examine the relation between SES and the likelihood of a low- and high-intensity caregiving among married female caregivers, adjusting for age, family characteristics and survey wave. Results: Of the 2661 respondents, high-intensity and low-intensity caregivers accounted for 16.35 and 21.27%, respectively. The multinomial logistic regression results showed that the likelihood of being a high-intensity caregiver versus (vs. a non-caregiver) increased as the caregiver’s educational attainment increased (p < 0.05), and that high economic status was related to the likelihood of being a high-intensity caregiver, but this relationship was only significant at the 10% level. Urban females were 1.34 times more likely than their rural counterparts to provide low-intensity care vs. no care (p < 0.05) and were 1.33 times more likely to provide high-intensity care vs. no care (p < 0.05). Employed females were 1.25 times more likely than those unemployed females to provide low-intensity care vs. no care (p < 0.05). Conclusions: Differences in SES were found between high-intensity caregivers and low-intensity caregivers. Women with high educational attainment and urban hukou were more likely to provide high-intensity informal care, and women who were employed and had urban hukou were more likely to provide low-intensity care.

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The Effect of Language Barriers at Discharge on Pediatric Adenotonsillectomy Outcomes and Healthcare Contact

Objective: Effective delivery of discharge instructions and access to postoperative care play a critical role in outcomes after pediatric surgery. Previous studies in the pediatric emergency department suggest that caregivers with language barriers have less comprehension of discharge instructions despite use of interpretation services. However, the impact of language barriers during discharge on surgical outcomes in a pediatric surgical setting has not been studied. This study examined the effect of parental language during discharge on number and mode of healthcare contact following pediatric adenotonsillectomy. Methods: A retrospective cohort study was conducted on children who underwent adenotonsillectomy at a tertiary care pediatric academic medical center from July 1, 2016 to June 1, 2018. Data were collected on consecutive patients with non-English-speaking caregivers and a systematic sampling of patients with English-speaking caregiver. Surgery-related complications and healthcare contacts within 90 days after discharge were collected. Two-tailed t tests, χ2 tests, and logistic regression were performed to assess the association between parental primary language and incidence of healthcare contact after surgery. Results: A total of 136 patients were included: 85 English-speaking and 51 non-English-speaking. The groups were comparable in age, sex, and comorbidities. The non-English group had more patients with public insurance (86% vs. 56%; P <.001). Number of encounters and types of complications following discharge were similar, but the non-English group was more likely to utilize the emergency department compared to phone calls (OR, 9.3; 95% CI, 2.3-38.2), even after adjustment for insurance type (OR, 7.9; 95% CI, 1.6-39.4). Conclusion: Language barriers at discharge following pediatric otolaryngology surgery is associated with a meaningful difference in how patients utilized medical care. Interventions to improve comprehension and access may help reduce preventable emergency department visits and healthcare costs.

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Effect of handholding on heart rate variability in both patients with cancer and their family caregivers: a randomized crossover study

Background: Many family caregivers of patients with cancer feel guilty about self-care. A meaningful relationship with patients reduces such negative feelings and functions as self-care for family caregivers. Moreover, handholding improves autonomic functions in non-cancer patients. However, the effects of handholding on both patients with cancer and family caregivers remain unknown. Methods: We evaluated the effects of handholding on heart rate variability (HRV) in patients with cancer and their family caregivers. This randomized crossover study divided patients with cancer and their family caregivers into two trial groups: Handholding trial (the family caregiver holds the patient’s hand for five minutes) and Beside trial (the family caregiver stays beside the patient without holding their hand). The study included 37 pairs of patients with cancer who received treatment in the cancer department of a university hospital in Japan and their family caregivers (n = 74). The primary end-point was the change in HRV before and during the intervention. Results: The median performance status of the patients was 3. An interaction was observed between trials in the standard deviation of the normal-to-normal interval (SDNN) of HRV for family caregivers (F = 7.669; p = 0.006), and a significant difference in time course was observed between the trials (before p = 0.351; during p = 0.003). No interaction was observed between trials in the SDNN for patients (F = 0.331; p = 0.566). Only a main effect in time course (F = 6.254; p = 0.014) was observed. SDNN increased significantly during the intervention in both trials (Handholding trial: p = 0.002, Beside trial: p = 0.049). Conclusions: Handholding improves autonomic functions of family caregivers and may function as self-care for family caregivers. Trial registration: UMIN000020557. Registered on January 15, 2016. 

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Economic Distress in Families with a Member Suffering from Severe Mental Illness: Illness Burden or Financial Crisis? Evidence from Greece

Objectives: The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. Methods: In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica. Relatives completed a self-reported questionnaire consisting of the Index of Personal Economic Distress, the Family Burden scale and the Family Rituals scale. Information on financial strategies for tackling recession and income loss due to the recession was also gleaned. Results: Regarding economic distress, only 15% had frequent difficulty meeting routine financial demands in their household. The preponderant strategy was spending savings (56.8%). Income category and spending less on basic needs were the main predictors of economic distress. Conclusions: Objective poverty indices rather than burden predicted economic distress to a greater extent.

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Dying within dyads: Stress, sense of security and support during palliative home care

Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping. 

 

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Dyadic effects of family resilience on post-traumatic stress symptoms among breast cancer patients and their primary family caregivers: A cross-sectional study

Objectives: The aims of this study were to verify actor and partner effects, by examining the effects of family resilience on post-traumatic stress symptoms (PTSS) among Chinese breast cancer patients and their primary family caregivers. Methods: In this cross-sectional study, 104 breast cancer patients (age range 20–75, Mean = 47, Standard Deviation = 10), and their principal caregivers (n = 104), were recruited from a comprehensive cancer center of a public hospital in China. The patients and their caregivers self-reported sociodemographic, family resilience, and PTSS factors. The actor-partner interdependence model were adopted to examine whether the patients and caregivers' perceived family resilience could contribute to their own ("actor effect") and each other's ("partner effect") PTSS. Results: There were significant correlations between patients' and caregivers' shortened Chinese version of Family Resilience Assessment Scale scores (r = 0.58, p < 0.01) and Post-traumatic Stress Disorder Checklist-Civilian Version scores (r = 0.69, p < 0.01). Caregivers' perceived family resilience was negatively related to their PTSS (actor effect), and the patients' PTSS (partner effect). However, the patients' perceived family resilience was not significantly related to their or the caregivers' PTSS. The primary caregivers' perceived family resilience had both actor and partner effects on patient/caregiver PTSS within the first year of breast cancer diagnosis. Conclusions: Family-based interventions should be designed to enhance family resilience to decrease PTSS within families dealing with cancer patients. Supportive care should focus on the primary family caregivers within the first year of breast cancer diagnosis. 

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Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects. The caregivers also completed the PedsQL survey, which showed the most important problems. The survey received 55 responses from caregivers of patients with DS (aged 2–25 years). Results: Prior to the diagnosis of DS, 85% of patients presented with status epilepticus lasting more than 30 min, and the frequency of seizures (mostly tonic-clonic or hemiconvulsions) ranged from 2 per week to hundreds per day. After the diagnosis of DS, patients remained on polytherapy (drugs recommended in DS). Before diagnosis, some of them had been on sodium channel blockers. Most patients experienced many adverse effects, including aggression and loss of appetite. The frequency of adverse effects was related to the number of drugs used in this therapy, which had an impact on the results of the PedsQL form, particularly in terms of the physical and social spheres. Intensive care unit stays due to severe status epilepticus also had an influence on the results of the PedsQL form. Conclusions: Families must be counseled on non-pharmacologic strategies to reduce seizure risk, including avoidance of triggers that commonly induce seizures (including hyperthermia, flashing lights and patterns, sleep abnormalities). In addition to addressing seizures, holistic care for a patient with Dravet syndrome must involve a multidisciplinary team that includes specialists in physical, occupational and speech therapy, neuropsychology, social work.

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Do-not-resuscitate decision making for terminally ill older patients in the emergency department: An explorative, descriptive inquiry of Chinese family members

Background: This study increases our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in the emergency department. Emergency medical staff should keep abreast of the attitudes and wishes of family members and terminally ill older adults regarding DNR, and initiate DNR decision-making discussions as early as possible. Emergency nurses should pay more attention to the desire of family members to improve the quality of life of terminally ill older adults with DNR. Many terminally ill older adults depend on family members to make medical decisions in China. Many family members find it difficult to make do-not-resuscitate (DNR) decisions in emergency departments (ED). Currently, factors that affect DNR decision making by family members for older adults needing emergency care have not been well studied. Methods: This qualitative inquiry explores factors influencing DNR decision-making among family members of terminally ill older adults in ED. Semi-structured in-depth interviews were conducted for a 12-family member of terminally ill older adults at ED in China. Results: Results of the conventional content analysis showed that family members made DNR decisions based on a wide of reasons: (a) subjective perception of family members, (b) conditions of the terminally ill older adults, (c) external environmental factors, and (d) internal family factors. The findings of this study expand our knowledge and understanding of factors influencing DNR decision-making by family members of terminally ill older adults in ED.

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Do Informal Caregivers Expect to Die Earlier? A Longitudinal Study with a Population-Based Sample on Subjective Life Expectancy of Informal Caregivers

Introduction: Subjective life expectancy is a good predictor of health and could therefore be a relevant factor in the informal caregiving context. However, no research has been conducted on the perception of life expectancy by informal caregivers. This is the first study that examines the association between transitioning into, and out of, informal caregiving, and subjective life expectancy, and the relevance of employment status and gender for these associations. Methods: A longitudinal study was conducted with data from the German Ageing Survey (waves 2008, 2011, 2014, and 2017). Up to 20,774 observations pooled over all waves were included in the main models. In total, 1,219 transitions into and 1,198 transitions out of informal caregiving were observed. Fixed effects (FE) regression analysis was used. Moderator and stratified analyses were conducted with gender and employment status used as moderator variables and to stratify the sample. Sociodemographic information, health, and lifestyle factors were controlled for. Results: Results of adjusted FE regression analyses indicated a significant reduction of subjective life expectancy when transitioning into informal caregiving. No significant change was found when transitioning out of informal caregiving. Subjective life expectancy was significantly decreased when employed individuals transitioned into informal caregiving and significantly increased when they transitioned out of caregiving. Findings for women transitioning into informal caregiving indicated a significant decrease in subjective life expectancy, while no significant change was found among men. Conclusion: The study's findings indicate that informal caregivers, female and employed caregivers in particular, perceive informal care provision as dangerous for their longevity and expect to die earlier when transitioning into informal caregiving. Thus, supportive interventions for informal caregivers, particularly employed and female informal caregivers, are recommended. 

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Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Objectives: This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. Methods: A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Results: Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. Conclusions: The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis. 

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Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

Background: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. Methods: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. Results: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. Conclusion: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

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Diabetes‐by‐Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes

Background: Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. Methods: We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child's glucose as a stress‐path to the virtual embodiment of their child's condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. Findings: These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Conclusions: Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.

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Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

Background: In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. Methods: In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers. This study recruited 103 participants from five branches of one municipal hospital system. The reliability and validity of the RHBPCS was evaluated using expert validity examination, confirmatory factor analysis (CFA), and item analysis. Results: The results showed that the RHBPCS had strong goodness-of-fit and good reliability and validity. Conclusions: In summary, the RHBPCS is suggested for assessing the readiness for home-based palliative care of primary family caregivers.

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Development and validation of a caregiving needs inventory for family members before their older relative's knee joint-replacement surgery

Objectives: This study had two purposes: to develop an instrument for assessing family members' caregiving needs before their older relative's knee joint-replacement surgery and to determine instrument psychometrics. Methods: In phase 1 of this validation study, we generated 34 items based on previous interviews with 138 family caregivers of patients with knee osteoarthritis (OA), an intensive literature review, and the authors' clinical experiences. In phase 2, we examined the content and face validities of the 34-item Family Members' Caring Needs Inventory (inventory) to develop a 32-item inventory. In phase 3, 150 family members of outpatients with knee OA were recruited from three hospitals in northern Taiwan and surveyed with the inventory to determine its internal consistency reliability and test–retest reliability. Results: The final 30-item inventory had excellent content and face validities. Its factor analysis yielded a five-factor solution, accounting for 82.9% of the variance. The inventory had Cronbach's α = 0.97 and intraclass correlation coefficient = 0.93, indicating very high internal consistency reliability and test–retest reliability. The inventory was perceived as easy to complete and yielded highly acceptable validity and reliability levels. After cross-cultural adaptation, this tool may be used to assess family members' caregiving needs before their relative's knee-replacement surgery. The role of family members and spouses in supporting patients with osteoarthritis (OA) is crucial. After cross-cultural adaptation, the Family Members' Caring Needs Inventory may be used by health care providers to assess and provide relevant information to meet the needs of family members caring for an older relative with knee OA. Conclusions: This assessment and specific caregiving information for family members of older knee OA patients may promote patients' quality of life and decrease their OA-related burden.

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Development and psychometric testing of the Spanish version of the Caregiver Preparedness Scale

Aim: To psychometrically test the Spanish version of the Caregiver Preparedness Scale (CPS) and document the preparedness level of caregivers. Design: A descriptive and validation study.MethodPurposive sampling method was used to select 171 family caregivers Spain. The scale was cross‐culturally adapted through a process that included translation, comparison with versions in other languages and back‐translation, review, pre‐testing and validity, and reliability tests. Results: The Spanish family caregivers are mainly female (79%) and married (75%). The Spanish version of the CPS presents changes with respect to the original. Confirmatory factor analysis supported the single‐factor model. Analysis of internal consistency yielded a Cronbach's α of 0.89. Significant correlations (p < .01) with other scales supported convergent validity. A descriptive analysis of the validated scale showed average levels of preparation (2.16 out of 4). Caregivers felt better prepared to attend to the patient's physical needs than emotional or spiritual needs.

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Determinants of caregiving burden among informal caregivers of adult care recipients with chronic illness

Aims and Objectives: This study examined the predictors of caregiver burden based on patient and caregiver characteristics in a sample of Spanish caregivers looking after adult patients with chronic disease. The effect of task type and patient–caregiver interaction is also analysed. Background: Specific predictors of caregiver burden have been widely examined in the literature. Few studies, however, jointly analyse a wide range of factors, including the effect of task type and patient–caregiver interaction. Design: Correlational study.MethodsOne hundred and thirty five informal caregivers for 148 care recipients were recruited from primary health care centres. The caregivers responded to the short version of the Zarit Burden Interview (ZBI), the DEPendency index‐6 Dimensions (DEP‐6D), and reported how long they spent on caregiving on a daily basis. Sociodemographic and health characteristics were also recorded. Linear and logistic regression models were used to evaluate factors associated with ZBI scores and the likelihood of being severely burdened, respectively. This research complies with STROBE guidelines for observational studies. Results: Severe burden was present in 62% of the caregivers. Regression analysis shows that burden severity increases significantly with the level of dependence when the latter is measured either by DEP‐6D or by time spent on basic activities. Care related to incontinence and mobility has the greatest effect on burden, which is aggravated when the patient has behavioural problems. Poor caregiver health or not being retired also contributes to burden levels. Conclusions: These results establish that caregiver burden is related to characteristics of both the caregiver and the care recipient as well as to their interaction.Relevance to clinical practiceThe findings indicate that the socio‐sanitary attention focused on reducing caregiver burden must address the caregiver and patient as a dyad. Identifying the dependence level and the patient's aggressive behaviour can be a good predictor of caregiver burden.

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Design and Evaluation of a Novel Mobile Phone Application to Improve Palliative Home-Care in Resource-Limited Settings

Context: Mobile health (mHealth) provides an opportunity to use internet coverage in low- and middle-income countries to improve palliative care access and quality. Objectives: This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods: A codesign process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda, and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N = 149 caregivers participated and uploaded n = 837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n = 355 occasions. Results: Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) a need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion: An outcomes-focused app and data dashboard are acceptable to caregivers and health-care professionals. They are beneficial in identifying, monitoring, and communicating patient outcomes and in allocating staff resource to those most in need.

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Depressive Symptom Trajectories in Family Caregivers of Stroke Survivors During First Year of Caregiving

Background: The purpose of this study was to identify patterns of depressive symptom trajectory and examine the associations of the symptom trajectory with caregiving burden, family function, social support, and perceived health status of caregivers of stroke survivors during the first year of caregiving after discharge from rehabilitation center. Methods: Caregivers of stroke survivors completed a survey of depressive symptoms, caregiving burden, family function, perceived availability of social support, and perceived health status at postdischarge and 1 year. Patterns of depressive symptom trajectory (ie, symptom-free, symptom relieved, symptom developed, and persistent symptom groups) were identified by grouping depressive symptoms based on 2 assessments using the Center for Epidemiologic Studies-Depression. Repeated-measures analysis of variance and multinomial logistic regression were used to examine the associations. Results: Of the 102 caregivers, 57.8% were symptom-free, 20.6% experienced persistent depressive symptoms, 11.8% relieved depressive symptoms, and 9.8% developed depressive symptoms. There were significant changes in family function (Wilks A = 0.914, P = .038) and perceived health status (Wilks A = 0.914, P = .033) among the groups during the first year of caregiving. The persistent symptom group reported the highest level of burden and the lowest level of family function and perceived availability of social support at both assessment times. Compared with symptom-free caregivers, caregivers with persistent depressive symptoms were 7 times more likely to have fair/poor health rather than excellent/very good health at 1 year (odds ratio, 7.149; P = .012). Conclusion: Caregivers with persistent depressive symptoms are the most vulnerable to negative psychosocial outcomes and poor perceived health status during the first year of caregiving from discharge for stroke survivors.

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Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Objectives: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. Methods: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35–80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. Results: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. Discussion: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

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Dementia and revivalist Islam: New perspectives to understanding dementia and tackling stigma

Background: The notion of stigma and its influence on the understanding of dementia has commonly been recognized as a great challenge to seeking healthcare services for South Asians in England. Aim: The aim of this commentary is to examine how Muslims view, understand and tackle dementia stigma in the context of revivalist Islam, especially among Bangladeshi Muslims within their British communities. This article reflects on the interrelationship between dementia and revivalist Islam among Bangladeshi family caregivers and addresses the question of how revivalist Islam is a significant source of understanding dementia and tackling stigma. Bangladeshi caregivers show a practical attitude toward dementia which is generally acknowledged as a medical symptom, and for which family caregivers voluntarily seek healthcare support. This piece highlights underlying principles of caregivers religious beliefs in the acceptance of dementia as a disease, and in help‐seeking which is influenced by Qur'anic verses and Prophetic traditions. Bangladeshi caregivers' religious beliefs intertwine with their knowledge, perception, and attitudes toward caregiving for their relatives with dementia. Conclusions: Revivalist Islam offers family caregivers an opportunity to explore their inner wisdom through the challenging journey of caregiving for their family members with dementia.

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Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19: Considerations for Case Managers

Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.

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The Cultural Diversity of Dementia Patients and Caregivers in Primary Care Case Management: a Pilot Mixed Methods Study

Background: The Canadian reality of dementia care may be complicated by the cultural diversity of patients and their informal caregivers. Objectives: To what extent do needs differ between Canadian- and foreign-born patients and caregivers? What are their experiences with the illness in primary care case management? Methods: Mixed methods, sequential explanatory design (a cross-sectional study, followed by a qualitative descriptive study), involving 15 pairs of patients and caregivers. Results: Foreign-born patients had more needs compared to their Canadian-born counterparts. Foreign-born caregivers reported more stress, more problems, and increased need for services. However, the reported experiences of Canadian- vs. foreign-born individuals were similar. Conclusion: The results remain hypothesis-generating. The present pilot illustrated the suitability of mixed methods to this area of study, which deserves further investigation to better serve all members of a population already vulnerable by age and disease.

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Could Caregivers’ Stressful Care Experiences Be Related to Their Attitudes towards Advance Care Planning? A Cross-Sectional Descriptive Study

Background: Previous research has shown that care experiences influence the willingness for advance care planning (ACP). Family caregivers have increased contact with medical providers and procedures in the process of caring, and they have also witnessed the disability and suffering of patients. However, few studies have focused on family caregivers to understand their attitudes towards ACP. Objective: The aim of this cross-sectional study was to acknowledge family caregivers’ attitudes towards ACP and the related factors, especially care stress and experiences during the care process. Methods: We interviewed 291 family caregivers, and the demographics of the caregivers and care recipients, the clinical condition of care recipients, and the caregivers’ stress and care experiences were collected via anonymous questionnaires. Multiple logistic regression was performed to determine the factors associated with the attitudes towards ACP. Results: We found that the caregiver having private health insurance (p < 0.001) and a completed DNR (p < 0.001) and the experience of recipients admitted to the ICU (p = 0.019) are associated with caregiver’s positive attitudes towards ACP. The greater the stress of conflict within a family over care decisions, the more participants think that ACP is important (p = 0.011). Conclusion: It is suggested that (1) in a family-centered culture, a public strategy for promoting ACP could be to emphasize the benefits of ACP in reducing family conflicts, and (2) when people make financial plans, they should also be provided with information about ACP to enable them to form a more integral plan for their future.

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Components of Empowerment Among Family Caregivers of Community-Dwelling People With Dementia in Japan: A Qualitative Research Study

Background: Family caregivers of people with dementia (PWDs) experience significant physical, psychological, and social burdens. Empowerment, which refers to the process of gaining power in society through behavioral change, is important to coping successfully with care-related burdens. The high burden of care faced by family caregivers in Japan often makes accepting social support difficult for caregivers of PWDs, resulting in feelings of isolation. Clarifying what components constitute empowering experiences for family caregivers of PWDs is necessary to gain a better understanding of their empowerment experiences and to develop relevant support schemes. Purpose: This study was developed to describe the components of empowerment experienced by family caregivers of community-dwelling PWDs in Japan. Methods: This qualitative descriptive study used semistructured in-depth interviews to explore components of empowerment experienced by family caregivers of adults/older adults with dementia. Purposive sampling was used to recruit 20 family caregivers (age range: 50–87 years) from four self-help groups. A qualitative content analysis method was used to analyze the data. The components derived from the interviews were reviewed by three nursing researchers not directly involved in this study who are specialists in qualitative research and geriatric nursing. Results: Four categories and 12 subcategories were derived to illuminate the components of empowerment among family caregivers of PWDs. Specifically, these categories were as follows: (a) proactive aspects of dementia care that were acquired through the caregiving experience, (b) creating a relationship that respects PWDs, (c) Building relationships based on mutual understanding of one's surroundings, and (d) understanding the social aspects of dementia care. Conclusions/Implications for Practice: The findings of this study provide additional understanding of the components of the empowerment experiences of family caregivers of PWDs in Japan and in other East Asian countries experiencing increasing dementia diagnoses and population aging. In addition, the structural components of empowerment offer a useful perspective for health professionals on assessment and intervention that is framed on the cultural characteristics of East Asia. Ultimately, the results suggest that healthcare professionals should develop intervention programs that are tailored to the needs of caregivers at different levels of empowerment.

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Community and informal care providers at the heart of universal health coverage in sub-saharan africa: A position paper

Globally, increased demand on often scarce healthcare resources and those challenges incumbent in responding to the coexistence of infectious and non-communicable diseases warrant the need to address persistent health inequities. Understanding the complex intersectionality of vulnerability and reaching those in most critical need of healthcare lies at the heart of fostering and sustaining resilient healthcare systems. Harnessing the long-recognised value of Community and Informal Care Providers (CICPs) is instrumental to Universal Health Coverage (UHC). The present COVID-19 context serves as a poignant example of where access to formal healthcare services by many has become increasingly difficult. Here, the value of informal or volunteer-led health services has been a lifeline for many. For several decades, formal reportage has evidenced the established role of CICPs, particularly across Sub-Saharan Africa with quantifiable efficacy across a number of domains, such as, maternal and child health, neglected tropical disease prevention, tuberculosis care and malaria control. CICPs have been sustainable and effective as a conduit between the formal and informal health sectors, and between health facilities and the remotest of communities. Maximising the function of CICPs relies on socio-culturally, geographically sensitive, and bespoke support; psychosocial, practical, and logistical capacitation coupled with situationally and culturally appropriate monitoring and evaluation. The Astana Declaration highlights the centrality of building on existing knowledge, insight and resource. We therefore argue that CICPs are indispensable in Africa’s move towards UHC, and hold promise for acceptable, accessible, affordable, and quality healthcare to everyone who needs to get, be and stay healthy. 

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Common ethical dilemmas of family caregivers of palliative patients in Indonesia

Background: Family caregivers, especially in Asian countries, have a profound role in caring for a sick family member. However, there are wide variations between the Asian and western world in terms of culture and facilities. Therefore, the problems and needs of family caregivers between those two regions may also be distinct, and it is important to explore and elaborate based on our empirical evidence. In Indonesia, motives and values in caregiving and religion become the wheel-power of the family caregivers in providing care. This affects action and consequences for caregivers. Aims: This paper attempts to elaborate on common ethical dilemmas that usually face by family caregivers in Indonesia. Conclusions: Unfortunately, family caregivers typically are not prepared to make those challenging decisions. Therefore, we recommend not only that family caregivers need to be involved in the caring process, but also their issues and ethical dilemmas should be assessed and addressed by health care professionals, especially nurses, who have the most frequent contact with patient and family caregiver. 

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Clinging to My Child: Mothers' Experiences Taking Care of a Child Hospitalized with Leukemia

Aims: The purpose of this study was to investigate, within the sociocultural context of Korea, mothers' experiences caring for their child being treated in a hospital for leukemia. Method: Study participants included 11 mothers who visited a hospital for their child's follow-up care after treatment for leukemia. The researchers investigated the mothers' experiences in caring for their children using a qualitative study design. Through interviews, the researchers identified five categories of experiences among participants, including, "Death anxiety," "Feeling guilty," "Fulfilling responsibilities as a mom," "Feeling overwhelmed by life," and "Feeling grateful." Findings: In the course of treatment, mothers tended to feel pressured to be a good mother, and sometimes felt overwhelmed by life. Conclusions: Healthcare providers need to grasp the difficulties faced by mothers taking care of their children hospitalized for treatment of leukemia, and must develop programs to reduce the burden on mothers and increase their families' functioning.

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Chinese Parents' Understanding of Autism Spectrum Disorder

Background: This study investigated family perceptions of Autism Spectrum Disorder (ASD) in China. Design: A survey with open-ended questions assessing knowledge of ASD and its causes was distributed via nine ASD organisations across five different cities in Southern China. Results: Results were analysed from a total of 104 Chinese caregivers who reported on their children or grandchildren with an ASD diagnosis. The results suggested that a large proportion of these families had limited understanding of ASD. A number of misconceptions were also evident within the sample. A tendency to blame themselves for their child's condition may have been further exacerbated by cultural expectations of the parental role. Discussion: The implications of these findings in addressing misconceptions about ASD in China are discussed.

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Children With Special Health Care Needs and Forgone Family Employment

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at _$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

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Changes in the balance between formal and informal care supply in England between 2001 and 2011: Evidence from census data

Background: Informal care plays a crucial role in the social care system in England and is increasingly recognised as a cornerstone of future sustainability of the long-term care (LTC) system. This paper explores the variation in informal care provision over time, and in particular, whether the considerable reduction in publicly-funded formal LTC after 2008 had an impact on the provision of informal care. Methods: We used small area data from the 2001 and 2011 English censuses to measure the prevalence and intensity (i.e. The number of hours of informal care provided) of informal care in the population. We controlled for changes in age structure, health, deprivation, income, employment and education. The effects of the change in formal social care provision on informal care were analysed through instrumental variable models to account for the well-known endogeneity. Results: We found that informal care provision had increased over the period, particularly among high-intensity carers (20+ hours per week). We also found that the reduction in publicly-funded formal care provision was associated with significant increases in high-intensity (20+ hours per week) informal care provision, suggesting a substitutive relationship between formal and informal care of that intensity in the English system. 

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Challenges Facing Family Caregivers of Children With Disabilities During COVID-19 Pandemic in Palestine

Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time. 

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Challenges Experienced by Family Caregivers of the Adult Intensive Care Unit Patients in Korea: An Integrative Review

Background: Consistent with global trends, population aging in South Korea is necessitating increasing admissions to intensive care units (ICU). Design: This integrative review describes the challenges experienced by family caregivers of ICU patients in South Korea and evaluates relevant intervention studies. Using Whittemore and Knafl's methods, we identify and synthesize findings from 20 (14 descriptive and 6 experimental design) articles and evaluate study quality. Findings: South Korean ICU family caregivers reported challenges such as feelings of powerlessness and vulnerability, difficulty in maintaining their own health and well-being, and mixed feelings regarding patients' transition to the general ward. Intervention studies, which were based on quasi-experimental design, examined modified visiting hours, information provision strategies, nurse-led transitional care programs, and educational support. Conclusions: Findings highlight the current state of the science in this topic area in South Korea. Future studies should use more robust methods, such as longitudinal cohort studies and randomized controlled trials.

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Caring for those who care for dependent older adults: for a necessary and urgent policy

The situation of caregivers and family caregivers of dependent older adults is presented and discussed, highlighting their dedication, problems, and possible recommendations to value them. The task of caring is known to be eminently feminine, invisible, unpaid, but affects society as a whole. Policies of some European countries, Canada, and the United States in favor of male and female caregivers are described. However, most existing support models have gaps. The laws and regulations enacted have been poorly comprehensive, inorganic, and the family remains responsible for long-lived relatives who have lost their autonomy. In many countries, besides other measures, the tendency is to integrate the family care as the first PHC level, universalizing support to caregivers. One must not be forgotten that the tendency to keep dependent older adults at home is acquiescence to their desire, but it also hides the delegation of responsibility from the State to families through dehospitalization and deinstitutionalization policies. In Brazil, the issue has not yet entered the public policy radar, although it is urgent because of the accelerated increase of the elderly population, particularly those aged 80 and over. 

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“Caring for the Elderly is Very Difficult”: Challenges and Coping Strategies of Caregivers in Urban Poor Accra, Ghana

Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed. A phenomenological analysis was conducted using NVivo 10. Findings: Primary and secondary caregivers experienced economic, physical, social, and psychological burdens. Also, caregivers used spirituality and perseverance to cope with their challenges. Conclusions: The findings demonstrate that caregivers’ challenges varied by type of caregiver. Researchers and policymakers should consider the type of caregiver when designing interventions to mitigate the negative impacts of family caregiving on caregivers.

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“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Background: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

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Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

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Caregiving burden and depressive symptoms among ultra‐orthodox Jews: The moderating role of sense of community

Background: Individuals who care for aging parents or relatives often experience caregiving burden, which is associated with various negative psychological outcomes. During the current COVID‐19 pandemic, the conflict between caring for older relatives and taking the necessary personal precautions against infection may be exacerbated among individuals who belong to social groups, which perceive caring for others as an indispensable cultural construct. Accordingly, the current study examined whether feeling a part of one's community moderates the association between caregiving burden and depressive symptoms among the ultra‐orthodox society in Israel. Methods: A convenience sample of 358 ultra‐orthodox participants was collected (age range 30–70; M = 49.50, SD = 10.24), all of whom completed scales assessing caregiving burden, sense of community, and depressive symptoms. Results: Results demonstrated that high caregiving burden and low sense of community were associated with increased depressive symptoms. Moreover, sense of community moderated the caregiving burden‐depressive symptoms link, as the latter positive association was significant only among individuals reporting low levels of sense of community. Conclusions: The discussion highlights the importance of sense of community as a beneficial personal and social factor, which mitigates the negative psychological consequences of caregiving burden among such societies.

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Caregivers’ Nutrition Knowledge and Dietary Intake of Type 1 Diabetic Children Aged 3–14 Years in Uganda

Purpose: This study aimed to assess the association between caregiver’s level of type 1 diabetes (T1D) nutrition knowledge with children’s dietary diversity score (DDS), mean intake of macronutrients, nutrient adequacy ratios (NARs) and mean adequacy ratio (MAR). Research Design and Methods: A cross-sectional analytical study design was used. The study was conducted at 6 diabetes clinics in Uganda among 59 caregivers and 61 children. T1D nutrition knowledge survey (NKS) was used to assess the caregiver’s nutrition knowledge, and the 24-hour dietary recall and dietary diversity score (DDS) questionnaires were used to collect data on the child’s dietary intake. Results: Majority (93.2%) of the caregivers had low T1D nutrition knowledge. Carbohydrate counting was the least performed nutrition knowledge domain. The children’s mean DDS, calorie intake and MAR were 5.7 ± 1.6, 666.7 ± 639.8 kcal and 0.7 ± 0.3, respectively. The mean NARs of carbohydrate, protein, and fat were 0.9 ± 0.3, 0.9 ± 0.4, 0.5 ± 0.5, respectively. There was a significant association between DDS with NARs of carbohydrate, protein, fat, vitamins A, B2, B3, B5, B12, folic acid, zinc and MAR. No formal education was significantly associated with a lower mean NKS score among caregivers (p = 0.039). Caregivers’ T1D nutrition knowledge, age and family size explained 14% of variation in the child’s dietary diversity (p = 0.041). Conclusion: Despite poor nutrition knowledge among caregivers especially on carbohydrate counting, dietary diversity among children with T1D remained favorable. Excess carbohydrate intake was observed with inadequate intake of proteins, fats and micronutrients (vitamin A, B vitamins and calcium). Caregivers with low education were more likely to register poor nutrition knowledge; therefore, there is need to develop and tailor nutrition education programmes to enhance comprehensive learning among caregivers for improved outcomes.

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Caregivers of Older Persons in Jamaica: Characteristics, Burden, and Associated Factors

Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.

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Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities

Objective: Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health‐care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities. Design: The 2019 National Survey of Children's Health dataset, which collected data on adolescents' and caregivers' demographic characteristics and health and well‐being, was used. The study sample consisted of 368 caregivers of adolescents, 12–17 years of age with physical disabilities. Results: No direct association between caregivers' difficulty paying their child's health‐care bills and bullying victimization was found. However, caregivers' frustration and adolescents' internalizing problems were shown to have an indirect association with bullying victimization, which was mediated by difficulty making friends. In addition, adolescents' difficulty making friends was positively associated with bullying victimization. Conclusions: Practitioners working with adolescents with physical disabilities are encouraged to foster collaborative processes across various ecological systems of the adolescent and family to address caregivers' frustration and promote positive social and emotional development of the adolescent with physical disabilities, which can decrease their risk of bullying victimization.

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Caregiver Social Status and Health-Related Quality of Life in Neurologically Impaired Children on Home Enteral Nutrition

Background: We aimed to investigate the association between caregiver social status and health-related quality of life (HRQoL) in children with neurological impairment (NI) on home enteral nutrition (HEN). Methods: This was an ancillary study of a multicenter, cross-sectional study which explored HRQoL in 75 NI children on HEN. All the caregivers from the original cohort were contacted, and data on education level, occupation and marital status were collected. The association between social status and HRQoL was investigated using a multiple Poisson Generalized Linear Model. In total, 93 caregivers were included, responsible for the care of 71 children. The caregivers of four children of the original cohort did not answer the questionnaire. Results: Mothers with high-level education presented lower HRQoL in comparison to mothers with low-level (β: −5.97; 95% CI −11.51, −0.10; p = 0.027) or medium-level education (β: 4.85; 95% CI −9.87, 0.53; p = 0.044). The analysis of the subgroup of cases in which the main caregiver was represented by both parents gave similar findings, with education level of the father being negatively correlated with HRQoL. Conclusions: Our data showed that higher education level may negatively affect quality of life of caregivers of NI children. This could be helpful in identifying at-risk families and addressing supportive efforts.

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Caregiver Characteristics and Outcomes Associated With Level of Care Complexity for Older Adults

Background: Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. Method: In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Results: Characteristics associated with high level of care include Hispanic or “other” race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. Conclusions: These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care. 

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Caregiver burden versus intensity of anxiety and depression symptoms in parents of children with cerebral palsy as well as factors potentially differentiating the level of burden: a cross-sectional study (Poland)

Objectives: To assess the relationship between caregiver burden and severity of symptoms of anxiety/depression in parents of children with cerebral palsy (CP), and to identify factors differentiating the level of caregiver burden. Setting: Regional rehabilitation centres in South-Eastern Poland.ParticipantsThe study involved 190 parents of children with CP, that is, 138 women and 52 men. Primary and secondary outcome measures: Caregiver burden was assessed using Caregiver Burden Scale (CBS), while the intensity of anxiety and depression symptoms was measured using Hospital Anxiety and Depression Scale (HADS). Potential predictors were examined using Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Barthel Index (BI) as well as a questionnaire focusing on the characteristics of the child, the parent and the family. The analyses applied Pearson’s linear correlation coefficient as well as multiple regression analysis. Results: All the CBS measures are significantly correlated to HADS-A (anxiety) and HADS-D (depression). Intensity of anxiety is most visibly linked to CBS measures of disappointment and environment (p<0.0001), while severity of depression is related to emotional involvement and general strain (p<0.0001). The factors differentiating caregiver burden measure in the subscales of general strain (p<0.0001) and social isolation (p<0.0001) include the child’s age and BI, and the parent’s health status; in the subscale of disappointment (p<0.0001)—the child’s age, BI, GMFCS, as well as the parent’s age and health status; in the subscale of emotional involvement (p=0.0007)—BI, and the parent’s health status; in the subscale of environment (p=0.0002)—the child’s age and BI. Conclusions: There is a positive linear relationship between the caregiver burden measures and severity of anxiety and depression. Effort should be made to relieve caregiver burden in parents of children with CP.

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Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.

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Caregiver Burden for People with Schizophrenia in Medan, Indonesia

The article focuses on the Caregiver Burden for People with Schizophrenia in Medan, Indonesia. Topics discussed include Caregiving for a family member with a chronic and/or major illness is held as an obligation in many cultures; and interviews were digitally recorded and transcribed, with transcriptions checked for accuracy; and participants were deidentified in the transcripts, and analysis was performed using thematic analysis.

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Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

Objective: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design: A cross-sectional survey. Setting: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). Conclusions: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.

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Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

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Caregiver burden and associated factors amongst carers of women with advanced breast cancer attending a radiation oncology clinic in Nigeria

Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role. 

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Care of stroke survivors in community: a case study of rural Thai community

Purpose: This study aims to describe survivors of stroke circumstances, issues with providing care for survivors of stroke and services expected by caregivers and survivors of stroke. Design/methodology/approach: A qualitative research design was conducted in Singburi Province. Data collection methods included in-depth interviews, focus groups and participatory observations. Semi-structured in-depth interview guides, quality-of-life scale and depression scale were used to collect data from survivors of stroke, their caregivers, health personnel, local governors and village health volunteers. Naturalistic research tradition was used for qualitative data analysis and descriptive statistics for quantitative data analysis. Findings: The majority of survivors of stroke had hemiplegic limb and severe deficits in their activities of daily living. Caregivers were family members, and they often developed depression. Issues with providing care to stroke survivors included lack of knowledge about stroke and home care, inadequacy and discontinuity of care and the shortage of stroke care personnel in the community. A stakeholder's expected stroke services included the provision of effective continuing care, community participation in care and enhancing the village health volunteer's capacity. Originality/value: This study illustrated the stroke service systems in rural Thai communities. The study's findings could be applied when planning future research using community participation to test a model of care for stroke survivors to promote better outcomes and be responsive to the needs of stroke survivors, especially those who are disabled.

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Burdens on caregivers of children ages one to sixteen years living with sickle cell disease attending a specialised clinic in urban, Jamaica

Background: Sickle cell disease (SCD) requires continuous familycentred management due to its chronicity and severity. Affected children depend greatly on their caregivers for assistance. SCD is the fourth leading cause of hospitalisation in children in Jamaica, with an incidence rate of 1:150 births. This strong dependence, frequent hospitalisation, medical visits and along with the unpredictable nature of the disease may cause financial strain and caregiver burden. This study seeks to determine the level of caregiver burden experienced by caregivers of children living with sickle cell disease attending a clinic in urban Jamaica. Design: A cross-sectional study was conducted among 180 caregivers of children ages 1 to 16 years living with SCD, attending a specialised sickle cell clinic. Data were collected using the Zarit Burden Interview (ZBI) Version 1.0. Descriptive statistics were utilised to summarise data. Results: The majority (79%) of respondents were females between the ages of 20 and 49 years old. Majority (76%) were employed, with 13% earning less than $10,000 which is below minimum wage. 48% of caregivers reported that they rarely or never experienced burden of care with their children. The ZBI overall burden score was M = 27.2, which indicate mild -- moderate burden. The highest burden was future expectations for child (41%). Majority (73%) indicated they often did not have enough money to care for the child. Conclusion: In this study, caregivers are younger and experienced burden mild to moderate; factors such as stable income and family support helped to reduce burden.

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Burden on family caregivers of children and adolescent in immediate post hematopoietic stem cell transplantation

Objective: To evaluate the burden on family caregivers of children and adolescents in immediate post hematopoietic stem cell transplantation. Method: Study of quantitative nature, of analytical and traverse type, accomplished in two institutions of health with 31 caregivers of children and adolescents in immediate post transplantation. The data collection was accomplished between October of 2018 and June of 2019. The caregivers' social demographic profile was characterized, and the burden was evaluated by Caregiver Burden Scale. The descriptive statistics and the Spearman correlation were used. Results: It was obtained a burden global score of 2.4/4; the domains with larger scores were: general stress and frustration, both with 2.8/4. Conclusion: The understanding of how the family faces the challenges imposed by the immediate post hematopoietic stem cell transplantation guides the multiprofessional team a care centered in the family and to offer maximum support and guidance to the caregiver.

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Burden and depression among Jordanian caregivers of hemodialysis patients: A cross-sectional study

Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units. 

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Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community

Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.

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Association between primary caregiver type and mortality among Chinese older adults with disability: a prospective cohort study

Background: Socio-demographic transitions have dramatically changed the traditional family care settings in China, caused unmet care needs among older adults. However, whether different primary caregiver types have different influences on disabled older adults’ health outcomes remain poorly understood. We aimed to examine the association between the type of primary caregiver (e.g., spouse and children) and death among community-dwelling Chinese older adults disabled in activities of daily living. Methods: We used data from Chinese Longitudinal Healthy Longevity Survey. The analytic sample comprised 4278 eligible adults aged ≥ 80 years. We classified primary caregiver type into five categories: spouse, son/daughter-in-law, daughter/son-in-law, grandchildren, and domestic helper. We used Cox regression model to examine the association between primary caregiver type and all-cause mortality. Covariates included age, sex, residence, years of education, co-residence status, financial independence, whether living with children, number of ADL disability, number of chronic conditions, and self-reported health, cognitive impairment, and caregiving quality. Results: Married older adults whose primary caregivers were son/daughter-in-law had a 38% higher hazard of death than those who had spouse as the primary caregiver. Married men who received care primarily from son/daughter-in-law or daughter/son-in-law had a 64 and 68% higher hazard of death, respectively, than those whose primary caregiver was spouse. The association between primary caregiver type and mortality among widowed older adults differed between urban and rural areas. Urban residents who had domestic helpers as the primary caregiver had an 16% lower hazard of death, while those living in rural areas had a 50% higher hazard of death, than those having son/daughter-in-law as the primary caregiver. Conclusions: The quality of care of the primary caregiver may be a risk factor for mortality of disabled older adults in China. Interventions are necessary for reducing unmet needs and managing care burden.

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Assessment of the Psychological Burden among Family Caregivers of People Living with Alzheimer's Disease Using the Zarit Burden Interview

Background: In China, family caregivers play a major role in caring for people living with Alzheimer's disease (PLWAD), but little is known about the burden this creates. Objective: This study aimed to investigate the burden among family caregivers of PLWAD and the factors influenced it. Methods: Family caregivers of PLWAD were recruited from a hospital in China from January 2018 to July 2018. All data were collected online using the Chinese version of the Zarit Burden Interview (ZBI), and the participants' sociodemographic and caregiving details were obtained. T-tests and Kruskal-Wallis H (K) tests were used to compare ZBI scores between groups. Factors related to the caregiver psychological burden were analyzed using multiple linear regression analysis. Results: A total of 300 participants were assessed, of which 213 (71.00%) were female. More than half of the caregivers were the patient's daughter (51.0%, n = 153). The average ZBI score of the caregivers was 43.05 (13.42). The level of burden was influenced by age, the relationship of the caregiver to the patient, the severity of AD, the caregiver's retirement status, the income level of the caregiver, and the caring time. Regression analysis showed that retired caregivers were more likely to have higher levels of burden and that burden increased with AD severity. Conclusion: Most family caregivers of PLWAD have a considerable caregiver psychological burden. The findings increase the understanding of factors that influence family caregiver burden, and pave the way for potential interventions, such as social support and caregiver empowerment, to reduce their burden. 

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Assessment of the perceived stress and burden of family caregivers of the head-and-neck cancer patients at a tertiary care cancer center: A cross-sectional study

Introduction: Cancer is a major life-threatening disease and has an impact on both patients and their family members. Caring for cancer patients may lead to several levels of stress which may affect their own health as well as their quality of life. Aim: To assess the perceived stress and burden of family caregivers of head and neck cancer patients (HNC) attending cancer care centre at a tertiary care centre, Tamil Nadu. Objectives: To assess the perceived stress and the burden among caregivers of patients with head and neck cancer using the Perceived Stress Scale (PSS) and Caregiver Strain Index (CSI) respectively. Materials and Method: A Cross-sectional study was carried out for a period of three months among the caregivers of head and neck cancer patients at a cancer care centre, Madurai. A total of 200 caregivers were selected by Convenience sampling method. Data was collected using a pretested, self-structured, closed-ended questionnaire by face to face interview method. Results: The study population consisted of Caregivers aged 21-60 years, mostly females (80%), spouses (54%), employed (57%) and uneducated (66%). Most of the caregivers were from lower socioeconomic status (66%) and those who are providing care for 1 to 6 months were more in number. In this study, 82% of caregivers reported high caregiver burden (CSI ≥7) and 67% of caregivers reported high stress (PSS ≥ 26 - 40). Conclusion: Caregivers are experiencing significant burden, particularly with respect to their physical and psychological well-being, economic circumstances, social and personal relationships.

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Assessment of the burden among family caregivers of patients with Alzheimer’s disease

Introduction: The objective of this study was to examine the caregiving burden and identify the predictors of burden among family caregivers of patients with Alzheimer’s disease. Materials and Method: The sample consisted of 154 family caregivers of community-dwelling Alzheimer patients. Zarit Burden Inventory was used to measure caregiver burden. Depending on the total score, the level of burden is classified as absent to little burden (0 to ≤20), mild to moderate burden (21 to 40), moderate to severe burden (41 to 60), and very severe burden (≥61). The cutoff point for the clinical depression was taken as 24. Results: The caregivers were mainly women (78.6%), the patient’s daughters (56.5%), living with the patient (79.1%), and they were not receiving any support from other family members for patient care (54.5%). The average time spent on caregiving tasks was 4.8 hours a day. The mean Zarit Burden Inventory score was 22.4. The burden scores of 39.6% of the caregivers were significant for clinical depression. The most pronounced predictors of higher burden were the absence of someone supporting the care, social isolation, the length of time spent daily for caregiving, and the patient’s age, comorbidities, and functional impairment in daily activities. Receiving psychological counselling was a protective factor against the development of burden. Conclusion: The results suggest that burden is high among the caregivers of patients with Alzheimer’s disease. Strategies should be developed to support family members in countries such as Turkey, where the care is undertaken by informal caregivers. 

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Assessing How a Transplant Hospitality House for Patients and Families Can Promote Wellbeing

Background: Patients and caregivers face increasingly complex and unique challenges when they travel to distant hospitals for transplant care. They can find themselves in a strange city managing hospital stays and outpatient appointments, requiring lodging, food, transportation, financial assistance, and emotional support. Those unable to overcome these logistical challenges may lose access to lifesaving treatment. Transplant specific hospitality houses have emerged to support patients who travel long distances from home to seek care, though little is known about the impact of such programs. Can a transplant hospitality house impact opportunities for family-centered care, perceptions of physiological and physical security, and perceptions of belonging and esteem? Can their contributions also be linked to perceived positive health outcomes and what aspects of a transplant hospitality house are most significant for a patient's and caregiver's health journey? Design: One transplant hospitality house investigated these questions with 71 participating in focus groups or key stakeholder interviews: transplant patients and caregivers, transplant hospital social workers, volunteers, financial contributors, board members, and staff. Results: The findings suggest that while patients and caregivers were dependent and deeply grateful for the lodging and amenities that met their basic needs, it was the contact and support from other patients and caregivers at the transplant hospitality house that had the most profound positive impact on patient and family attitudes, outlooks, and perceived well-being.

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Are the gender gaps in informal caregiving intensity and burden closing due to the COVID-19 pandemic? Evidence from the Netherlands

Background: This research note presents the findings of changes in the gender gap in informal care provision and caregiver burden during the Spring 2020 COVID-19 lockdown in the Netherlands. Government measures in response to the pandemic strongly restricted informal caregivers in providing help and care to persons with health-related needs. At the same time, formal care was scaled back and informal caregivers' urge to help their loved ones was likely higher than before the pandemic. Generally, women pick up a larger share of informal care and experience more caregiver burden. Method: We assessed whether the COVID-19 pandemic affected the gender gaps in informal caregiving by analyzing unique data on Dutch informal caregivers (N = 1672 caregiving situations in 1196 respondents). Results: showed that women, compared to men, were more likely to have stopped and reduced caregiving, but also to have cared more during the pandemic. Moreover, based on longitudinally comparing levels during and before the lockdown, we found that the gender gap in caregiver burden narrowed down, especially because burden decreased for women. Conclusions: This means that the caregiver burden was more equally distributed among women and men during the Spring 2020 COVID-19 lockdown than before. 

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Are mothers and daughters most important? How gender, childhood family dissolution and parents’ current living arrangements affect the personal care of parents

Background: This study examines adult children’s propensity to provide personal care to older mothers and fathers. The theory of intergenerational solidarity facilitates the understanding of commitment and support between adult children and parents. Solidarity may depend on childhood events as well as the current situation, and we therefore focus on whether there was a parental breakup in childhood and the parent’s current living arrangements. We also focus on the gendered aspects of the relations as earlier research has found stronger matrilinear relationships. Method: The propensity for personal care was analyzed with regression analysis using the 2012 Swedish Generations and Gender Survey. Results: The results show that daughters are more likely than sons to provide personal care to both parents. Parental breakup in childhood does not change the propensity of personal care to any parent. The probability of receiving care is higher for lone mothers than for mothers living with the father, but not for repartnered mothers. Adult children’s care provision does not differ for lone fathers and fathers living with the mother, but children are more likely to provide care to lone fathers than to repartnered fathers. We interpret this to indicate that repartnering weakens ties to fathers but not mothers. The results indicate that the child’s gender and the parent’s living arrangements operate differently with regard to care for mothers and fathers. The most common pattern is care provided from daughters to mothers. For example, daughters of lone mothers are more likely to provide care than sons in the same situation. Conclusion: We conclude that intergenerational solidarity is not affected by parental breakup in childhood but that present living arrangements affect such solidarity in gendered ways. 

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Adolescent Latinas' with Diabetes and Their Mothers' Understanding of Diabetes and Reproductive Health: Converging Themes to Inform a Culturally Sensitive Preconception Counseling Program

Background: Latinas are at an increased risk for diabetes and reproductive health (RH) complications with sexuality and pregnancy. This study explored the understanding of diabetes related to RH, pregnancy, unplanned pregnancies, preconceptioncounseling, tight-control, and family planning among Latina adolescents with diabetes and their mothers and explored converging themes. Method: The qualitative descriptive study used written open-ended questions (English or Spanish) with Latina mothers (n = 13) and daughters (n = 21). Responses were transcribed. Content analysis was used by four researchers who coded and discussed themes and reached consensus. Converging themes were confirmed using Atlas.ti software. Findings: Seven themes emerged from the mother–daughter dyad: communication (awkwardness, ambivalence, styles); control (being controlled vs. controlling); consequences (fertility, complications); planning (pregnancy, being healthy, life plan, RH); support; danger, risk, and safety; and stigma. Conclusion: Many mother–daughter dyads were not ready to discuss RH among themselves. Cultural and familial perspectives should be considered when providing care and preconception counseling to this population.

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Adapting ENABLE for patients with advanced cancer and their family caregivers in Singapore: a qualitative formative evaluation

Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.

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“Achieve the best while rushing against time": A grounded theory study on caring for low-income immigrant cancer patients at end of life

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: "providing and receiving hospitality," "understanding each other," "addressing diversity," and "around the patient," which we conceptualized under the core category "Achieve the best while rushing against time." Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs.

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Timing of Immigration Effects Asset Change Among Hispanic Caregivers of Older Family Members

Given the cultural value of family in Hispanic culture, older Hispanic immigrants are likely to have family caregivers. This study examined the economic implications of caring for older Hispanic adults regarding non-housing financial wealth over time. Using the 2008, 2010, and 2012 waves of the Health and Retirement Study (HRS) and RAND HRS data files, this study compares changes in the non-housing financial wealth between 2008 and 2012 by caregiving and immigration status among Hispanics. This study examined differences in assets between Hispanic caregivers and non-caregivers and more specifically examined the subpopulation of Hispanic caregivers who immigrated prior to and after 1968 as compared to U.S.-born caregivers to better understand the effect of the Immigration and Nationality Amendment Act of 1965 on asset change. Results indicate that caregiving itself did not have a statistically significant association with wealth, but the timing of immigration to the US had a statistically significant correlation (p < .05) with changes in the financial wealth. The findings of this study have implications for policy and program development targeting older adults and caregiving for this population.

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Self-reported symptoms of depression and anxiety among informal caregivers of persons with dementia: a cross-sectional comparative study between Sweden and Italy

Background Around 50 million people worldwide are diagnosed with dementia and this number is due to triple by 2050. The majority of persons with dementia receive care and support from their family, friends or neighbours, who are generally known as informal caregivers. These might experience symptoms of depression and anxiety as a consequence of caregiving activities. Due to the different welfare system across European countries, this study aimed to investigate factors associated with self-reported depression and anxiety among informal dementia caregivers both in Sweden and Italy, to ultimately improve their health and well-being. Methods This comparative cross-sectional study used baseline data from the Italian UP-TECH (n = 317) and the Swedish TECH@HOME (n = 89) studies. Main outcome variables were the severity of self-reported anxiety and depression symptoms, as measured by the Hospital Anxiety and Depression Scale (HADS). HADS scores were investigated using descriptive and bivariate statistics to compare means and standard deviations. Linear regressions were used to test for associations between potential factors and self-reported symptoms of depression and anxiety. Results Italian informal caregivers reported more severe symptoms of depression and anxiety than Swedish caregivers. In Italy, a higher number of hours of caregiving was associated with anxiety symptoms (beta = - 1.205; p = 0.029), being 40-54 years-old with depression symptoms (beta = - 1.739; p = 0.003), and being female with symptoms of both depression (beta = - 1.793; p < 0.001) and anxiety (beta = 1.474; p = 0.005). In Sweden, a higher number of hours of caregiving and being < 39 years-old were associated with depression symptoms (beta = 0.286; p < 0.000; beta = 3.945; p = 0.014) and a higher number of hours of caregiving, the lack of additional informal caregivers and dementia severity were associated with anxiety symptoms (beta = 0.164; p = 0.010; beta = - 1.133; p = 0.033; beta = - 1.181; p = 0.031). Conclusion Multiple factors are associated with self-reported symptoms of depression and anxiety among informal caregivers in Sweden and Italy. Factors found in this study partly differ between the two countries, suggesting the important role of cultural and social factors affecting the experience of caregiving. A deeper knowledge of these factors may increase the knowledge on potential protective and risk factors, provide information to policymakers and ultimately improve the psychological well-being of informal caregivers to people with dementia across Europe.

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Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients' frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads' preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people's medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia-Pacific region.

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Preferences and Experiences of Muslim Patients and Their Families in Muslim-Majority Countries for End-of-Life Care: A Systematic Review and Thematic

Background. Care for people with progressive illness should be person centered and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-income and middle-income countries. Aims. This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients and/or families for end-of-life care in Muslim-majority countries. Design. Systematic review. Data sources. PsychINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials, PubMed, Applied Social Sciences Index and Abstracts (ASSIA), Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and gray literature was included. Qualitative studies analyzed using thematic analysis and quantitative component provided triangulation. Results. The initial search yielded n = 5098 articles, of which n = 30 met the inclusion criteria. A total of 5342 participants (4345 patients; 81.3%) were included; 97.6% had advanced cancer. Most (n = 22) studies were quantitative. Three themes and subthemes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness), and strong beliefs in Islam (beliefs in death and afterlife and closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families. Conclusion. Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the total pain model, beliefs must be identified and understood in relation to decision-making processes and practices. 

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Patterns of informal family care during acute hospitalization of older adults from different ethno-cultural groups in Israel

Introduction: Informal caregiving during hospitalization of older adults is significantly related to hospital processes and patient outcomes. Studies in home settings demonstrate that ethno-cultural background is related to various aspects of informal caregiving; however, this association in the hospital setting is insufficiently researched. Objectives: Our study explore potential differences between ethno-cultural groups in the amount and kind of informal support they provide for older adults during hospitalization. Methods This research is a secondary data analysis of two cohort studies conducted in Israeli hospitals. Hospitalized older adults are divided into three groups: Israeli-born and veteran immigrant Jews, Arabs, and Jewish immigrants from the Former Soviet Union (FSU). Duration of caregiver visit, presence in hospital during night hours, type of support (using the Informal Caregiving for Hospitalized Older Adults scale) are assessed during hospitalization. Results are controlled by background parameters including functional Modified Barthel Index (MBI) and cognitive Short Portable Mental Status Questionnaire (SPMSQ) status, chronic morbidity (Charlson), and demographic characteristics. Results: Informal caregivers of "FSU immigrants" stay fewer hours during the day in both cohorts, and provide less supervision of medical care in Study 2, than caregivers in the two other groups. Findings from Study 1 also suggest that informal caregivers of "Arab" older adults are more likely to stay during the night than caregivers in the two other groups. Conclusions: Ethno-cultural groups differ in their patterns of caregiving of older adults during hospitalization. Health care professionals should be aware of these patterns and the cultural norms that are related to caregiving practices for better cooperation between informal and formal caregivers of older adults.

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Missing the Mark: The Complexity of African American Dementia Family Caregiving

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families. 

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Caregiver Well-Being and Burden: Variations by Race/Ethnicity and Care Recipient Nativity Status

Background and Objectives: Despite growing diversity among the aging population and extensive previous research on racial/ethnic minority caregivers, little research has been conducted on the potentially unique experiences and outcomes of informal caregivers of foreign-born care recipients. Using nationally representative data and the Stress Process Model, the current study examined the differences in caregiver outcomes (care burden, psychological well-being, and self-rated health) by care recipient nativity status (U.S.-born vs. foreign-born) and the extent to which caregiver outcomes vary by care recipient nativity status and caregiver race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and Others). Research Design and Methods: The current study used Round 5 of the National Health and Aging Trends Study and the National Study of Caregiving (N = 1,436). We conducted ordinary least squares regression to analyze the differences in caregiver's outcomes by care recipient nativity status and caregiver race/ethnicity and to investigate the impacts of the inclusion of caregiving factors (background factors, primary stressors, secondary stressors, and resources). Results: Regression analyses showed that only care burden significantly varied by care recipient nativity status after controlling for covariates. Caregivers of foreign-born care recipients reported a higher burden. However, when interactions of care recipient nativity status x caregiver race/ethnicity were introduced, non-Hispanic black and Hispanic caregivers of foreign- born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Across caregiver groups, better caregiver-care recipient relationship quality and less caregiver chronic conditions were associated with less burden and better caregiver psychological well-being and self-rated health. Discussion and Implications: Care recipient nativity status and caregiver race/ethnicity may have complex effects on caregiving experiences. Given the observed significant interaction effects for caregiver psychological well-being and self-rated health, cultural factors may affect the extent to which these caregivers appraise their caregiving. Future research should delve into the appropriate ways to assess care stress as well as resilience among each caregiver group. Our results indicate the need for research, education, and practice that assess cultural and within-group differences among caregivers and inform needed changes to structural barriers. Translational Significance: Caregivers of foreign-born older adults report more care burden than caregivers of U.S.-born older adults. These caregivers typically are the adult children of their care recipient and spend more time helping with daily activities and medical care than caregivers of U.S.-born care recipients. Non-Hispanic black and Hispanic caregivers of foreign-born care recipients were more likely to report better psychological well-being and self-rated health compared to their counterparts. Culturally appropriate assessments and interventions are needed to address the unique challenges and resilience of caring for foreign-born care recipients.

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Sources of Caregiving Burden in Middle-Aged and Older Latino Caregivers

Objective: We aimed to identify sources of caregiver burden in middle-aged and older Latino caregivers of people with Alzheimer disease and related dementia (ADRD). Methods: Participants were recruited through an agreement with the Rush Alzheimer's Disease Center Clinic Data Repository. We conducted semistructured interviews with 16 middle-aged and older Latinos who were the primary caregiver for a family member diagnosed with ADRD. The interview guide consisted of questions and probes to capture participants' perceptions of family caregiving. Direct content analysis was performed. Results: Participants were aged 50 to 75 years (n = 16) and a majority female (n = 12). The sources of burden identified were (1) caregiver responsibilities, (2) caregiving-related health decline, (3) lack of support, (4) financial status, (5) vigilance, and (6) concerns about the future. Conclusions: The influence of gender roles seemed to play a role in caregivers' perceptions of sources of burden, especially on caregiver responsibilities and perceptions of lack of support. Latinos cultural values such as familismo and marianismo likely reinforced gender disparities in family caregiving. 

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An international systematic review of dementia caregiving interventions for Chinese families

Objectives: Older Asians and Chinese are among the least studied populations in the dementia caregiving literature. This review seeks to critically synthesize the literature on intervention characteristics, components and tailoring strategies for dementia family caregivers in Chinese communities globally. Methods: Five electronic databases (PsychINFO, PubMed, CINAHL, ScienceDirect and Google Scholar) were searched for articles published between 1980 and July 2018. The protocol of this review was registered with PROSPERO (CRD42019132800). Results: Twenty‐nine unique interventions across 39 papers met inclusion criteria. Results from descriptive and thematic syntheses revealed that most interventions were psychoeducational, CBT‐based, multicomponent, structured, and less than a year in duration. Disease education, management of behavioral and psychological symptoms of dementia, stress coping techniques, and referral to community resources were frequently included in interventions. Community‐, culture‐ and language‐focused strategies were used to tailor interventions. The most common tailoring strategies were: (a) using community networks and media for outreach and recruitment; (b) making translations and language adaptations to the intervention materials; and (c) focusing on trust and therapeutic alliance. Most interventions produced desired outcomes, particularly reducing caregiver burden and increasing self‐efficacy. Conclusions: To our knowledge, this is the first review to date that systematically synthesized the characteristics and tailoring of dementia caregiving interventions for Chinese families globally. Current findings suggest that most interventions are effective, although many only superficially address Chinese culture. Future research should incorporate Chinese values and cross‐cultural challenges into caregiving interventions for deep‐level adaptations that could potentially be more effective to engage and support Chinese caregivers.

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Female Pakistani carers' views on future formal and informal care for their older relatives in Norway

Background: The aging of Pakistani immigrants in Norway raises questions related to their increased need for care and help from relatives, as well as those concerning what future formal and informal care and healthcare accessibility for older immigrants may look like. The hidden nature of family caregiving means that the circumstances of carers, their views and their dilemmas related to future care are largely invisible. In this study, we explored female Pakistani carers' views of future care and healthcare accessibility for their older relatives in Norway. Methods: Our data included interviews with family carers between the ages of 23 and 40 years old, living in Oslo, Norway. We recruited ten family carers, out of which eight were daughters and two were daughters-in-law. Interviews were conducted by the first author in Urdu or English and were recorded and transcribed verbatim. Results: Our findings revealed several factors that influenced participants' perceptions about formal and informal caregiving, which can be organised into the following themes: 1) caring for family in Norway as in Pakistan, 2) worries about being 'dropped off' at a care home, 3) concerns about being cared for by outsiders, 4) questions about what other people might say and 5) adhering to society's expectations of a 'good' carer. Conclusion: Family carers' traditional views of filial piety do not entirely determine the use of or access to healthcare services of their older relatives. There is a need to develop culturally sensitive healthcare systems so that immigrant families and their carers have more options in choosing care in old age, which in turn will ease their families' care burden. Healthcare professionals and policymakers should not assume that immigrant families will take care of their own older members but should instead secure adequate support for older immigrants and their family carers. 

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Dementia Caregiving Research: Expanding and Reframing the Lens of Diversity, Inclusivity, and Intersectionality

This forum expands and reframes the lens of dementia caregiving research among diverse racial and ethnic groups to better understand the unique needs, stressors, and strengths of multicultural and racial-ethnic family caregivers in the United States. By providing more diverse and inclusive knowledge on caregiving to older adults in the United States, we can create a new path forward with regards to caregiving research. Throughout the article, major questions and answers are supported by critiquing some of the caregiving literature. Discussions are provided to help create inclusive ways of conceptualizing caregiving research and using methodological approaches to reflect the diversity of caregivers and care recipients in the United States. Expanding and reframing the conceptual and methodological lens of diversity, inclusivity and intersectionality can provide evidence to support effective policy, practice, and care in addressing the needs of diverse groups of caregivers and older adults living with dementia. 

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Cultural Values, Preferences, and Goals of End-of-Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (GP702)

Objectives: • Recognize the Importance and relevance of culture to EOL care. • Describe CBPR and focus group methods. • Examine what patients with serious illness in Ghanaian hospital face.

Original Research Background: Understanding patient and family cultural values, preferences and goals of care in patients with life-threatening illness is the first step in ensuring the provision of goal-concordant care. Palliative care (PC) programs are at their infancy in Ghana, with three PC physicians and four nurses at Komfo Anoyke Teaching Hospital (KATH) in Kumasi, a city of 1.5m people. Ghana has a collectivist culture in which families and communities, not the individual, is central. Little is known about End of Life (EoL) care values, care preferences and goals of care.  Research Objectives: To gain an understanding of cultural values, preferences and goals of care of family caregivers of patients who had received EoL care at KATH.  Methods: Community Based Participatory Research served as the study's guiding principles. An 8-member Community Advisory Group advised on focus group implementation including meeting site, topics of discussion, ethical considerations, and recruitment methods. The focus group included nine family members and focused on care received by their loved one during their recent serious illness. This session was recorded, transcribed and analyzed using a systematic thematic analysis.  Results: Emergent themes included problems related to healthcare system: unreliable access to doctors, high cost of care (self-pay is the main method), challenges of getting diagnosed, pain and symptom burden, and poor doctor-patient-caregiver communication. Three cultural values emerged: caregivers' pivotal role in caring for loved ones; discussion of prognosis requiring involvement of others, and key role of God/faith in illness and dying processes.  Conclusion: This pilot study provided PC physicians insight into values, preferences and goals of care, and provided community caregivers the opportunity to participate at the start of designing a culturally-based EOL care program.  Implications for Research, Policy or Practice: Understanding community values and preferences is the first step towards building programs that ensure culturally-based goal-concordant care. Overcoming the systemic barriers will require longer-term efforts.

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Cross‐cultural differences in Parkinson's disease caregiving and burden between the United States and Mexico

Introduction: Given the rapidly aging population in both the United States and Mexico, rates of Parkinson's disease (PD) are likely to rise in both countries, suggesting that the number of individuals providing informal care will also increase, and the healthcare system will have to consider the burden this places upon caregivers. Therefore, the purpose of the current study was to examine differences in PD caregiving and burden between the United States and Mexico. Methods: Data were collected from PD caregivers in the Parkinson's Clinic at the Hospital Civil Fray Antonio Alcalde in Guadalajara, Mexico (N = 148) and the Parkinson's and Movement Disorders Center at Virginia Commonwealth University in Richmond, Virginia (N = 105) regarding caregiver demographics and self‐reported burden. Results: Despite considerably more time spent in caregiving duties, higher rates in unemployment or underemployment, and lower education levels, Mexican PD caregivers reported significantly less personal strain and role strain than did their United States counterparts. Even after controlling for these and other demographic differences between the two sites, the differences in caregiver burden remained. Conclusions: Latino cultural values in Mexico encouraging the importance of caring for family members with PD and respecting elders may promote caregiving and even make it a point of cultural pride, helping to overcome potential negative effects on caregivers seen in the United States. The scientific and medical communities should view caregiving as a culturally embedded and potentially positive role, rather than predominantly as burdensome as frequently conceptualized in Western or Eurocentric cultures. 

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Comparing Advance Care Planning in Young-Onset Dementia in the USA vs Belgium: Challenges Partly Related to Societal Context

Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers. An exploratory qualitative study. We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient. We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis. Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians. Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made. 

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Changing Shapes of Care: Expressions of Filial Piety among Second-generation Chinese in the Netherlands

This study explored perceptions of filial care among second-generation Chinese immigrants in the Netherlands. The provision of filial help or care can be regarded as a cultural phenomenon known as filial piety and it can be considered within the broad scope of caregiving as "family care". Fifteen interviews were conducted, and a thematic analysis was applied. The findings showed that care was given in the form of language brokering, information inquiry, home visits, and facilitative and social support. Care was perceived as a moral duty among the participants and was grounded in their perceived sense of responsibility. The participants' perspectives on current and future care included practical and normative considerations for meeting parental needs, and included opinions based on filial piety norms. In conclusion, this study showed that filial piety, specifically filial care, is still relevant to the younger immigrant Chinese community in the Netherlands. 

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Caring for elderly parents: Perceived filial obligations among Maghrebine immigrants in Italy

The migrant population in Southern European countries is aging. In the next future, long-term care needs of immigrant individuals will be a major issue in the evolution of social policies in these countries. In this context, it becomes important to examine what are the norms of filial obligations that govern the exchange of social support within migrant families. The study focuses on solidarity norms and support expectations among Mahgrebine immigrants living in Italy. It is shown that: i. intergenerational co-residence is seen as the best strategy to cope with the care need of elderly parents; ii. only a minority of respondents, especially those born in Italy or arrived before age 6, think that providing economic support or hiring a professional carer is a good solution. The importance of cultural and religious motivations at the basis of norms of filial obligations was explicitly, particularly as far as cohabitation is concerned. The majority of respondents held a gender-neutral view with respect to the sharing of responsibilities, although some gendered divisions emerged. Respondents who either were born in Italy or migrated before age six are considerably more likely to hold gender-neutral views on the division of informal care work.

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Caring for a family member with intellectual disability into old age: Applying the sociocultural stress and coping model to Italian and Greek migrants in Australia

Background: Little is known about how older parent caregivers from culturally and linguistically diverse (CALD) backgrounds experience caring for their family member with intellectual disability into late life. Method: In‐depth semi‐structured interviews were carried out with N = 19 family caregivers aged 50–91 from ten Italian and four Greek families. The Sociocultural Stress and Coping Model was used as a framework to interpret their experiences. Results: A number of stressors including the need to make sacrifices, physical and emotional demands, uncertain futures and challenges associated with "the system" were identified. While family members play a key role in providing support, changing values around filial responsibility were evident. Discussion: Further attention needs to be given to CALD families to address challenges associated with caring for their family member with intellectual disabilities as they age. This study also challenges assumptions that CALD families prefer to keep caring within the family long‐term.

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Caregiving Burden and self-care among European-American and Chinese-American family caregivers of people with mental illness

Family caregivers (FCs) of persons with mental illness (PMI) often experience caregiving burdens that contribute to poor mental health. As compared to European-American FCs, Asian-American FCs may experience greater caregiving burden due to an increased likelihood of cohabiting with PMIs. Yet, limited research exists on the caregiving experience of Asian-American FCs and on how self-care practice and social support mediate caregiver burden among FCs of PMIs. Using a cross-sectional mixed-method design this study explored the impact of caregiving burden on mental health outcomes among Chinese-American and European-American FCs. The quantitative data showed similar caregiving burden between the two groups and a partial mediation role for self-care practice on FCs' mental health. The qualitative data showed that FCs from the two groups utilized different types of social support. Findings suggest the need for mental health professionals to develop intervention programs to enhance self-care practices and social support for FCs when working with PMIs.

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Caregiving Attitudes and Needs of Later-generation Chinese-American Family Caregivers of Older Adults

Due to linguistic and cultural adjustments to a new country, first-generation immigrant's caregiving challenges have been well-documented. However, little is known of U.S.-born, U.S.-educated, English-speaking later-generation caregivers' (2nd, 2.5, and 3rd-generation) attitudes and needs regarding caregiving. Given this context, we interviewed 40 later-generation Chinese-American caregivers in Seattle and Houston. Caregivers had a mean age of 59 years, were married, college-educated, and working females with children. The later the caregiver's generation, the higher their acculturation, but their sense of filial responsibility remained high across generations. While Seattle caregivers wish to live in a high-quality, long-term care facility, Houston caregivers prefer to live with their adult children for their future care. Findings emphasize the importance of understanding the caregivers' ethnically and generationally specific caregiving attitudes and preferences for geographically specific services. Collaborating with existing local organizations, it is critical to ensure that the provision of services meets local Chinese-American caregivers' needs and preferences.

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Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers

Background: While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. Methods: This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. Results: Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member's pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member's prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. Conclusion: Fulfilling and enhancing one's sense of self-determination appears central to infusing one's caregiving motivations with positive meaning, and consequently nurturing one's wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

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Beliefs of Israeli Family Caregivers of People with Dementia toward Advance Care Planning

Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.

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Becoming a family caregiver of a patient living with cancer

Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.; Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.; Methods: This was an autoethnographic study.; Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.; Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.

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Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

Background: Advance care planning (ACP) facilitates identification and documentation of patients' treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers. Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants' experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content. Results: A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients' participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system. Conclusions: Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers. 

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Adapting a Palliative Care Literacy Intervention for Use in Israel (GP787)

Objectives Describe growth of palliative care in Israel and the need to increased palliative care literacy among patients and family caregivers. Describe the process of adapting the Managing Cancer Care intervention for use in Israel. Summarize recommended expert panel, patient, and family caregiver edits to the Managing Cancer Care intervention. Importance. Although palliative care (PC) is growing in Israel, few receive PC due to lack of knowledge and availability of services. Increased PC literacy and use is needed to improve health outcomes. Objective(s). Adapt a PC-focused cancer self-management intervention to improve PC literacy and use in Israel. Method(s). Managing Cancer Care (MCC) consists of two interventions, MCC-PTfor patients and MCCCGfor family caregivers. Both have improved knowledge of PC and its integration into cancer self-management among users in Connecticut. To adapt MCC for use in Israel, we professionally translated MCC from English to Hebrew. An expert panel of Israeli clinicians (n¼3) edited modules for cultural relevance. We conducted cognitive interviews with patients and family caregivers at an oncology center in northern Israel to inform further edits. Inclusion criteria were patients and family caregivers managing Stage III/IV breast cancer, aged 18+, Hebrew- or English-speaking, and receiving any type of treatment. Participants provided demographic/clinical information and received the appropriate version of MCC. Interviews on intervention content and format occurred 2-4 weeks later. We analyzed interview data using content analysis. Results. Following expert review, we revised MCC content specific to the U.S. health care system (e.g., hospice benefit) and American culture/language (e.g., no Hebrew word for ''multidisciplinary''). Patients' (n¼13) mean age was 49 (range 36-69). 85% had Stage IV disease with an average 6 years since diagnosis. Caregivers' (n¼10) mean age was 57 (range 47-66) with 60% male. 23% of patients and 30% of caregivers correctly defined PC. 30% of patients had seen a PC physician. MCC was reported by patients and caregivers as topically relevant (80%,70%), attractive (70%,80%), and culturally appropriate, and suggested more Israel-specific content on PC resources. Conclusion(s). MCC appears acceptable to Israeli users and warrants pilot-testing. Impact. PC infrastructure in Israel may grow in response to increased PC literacy and requests for PC. We are collaborating with Israel's Ministry of Health to further study objectives.

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Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Background: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be. Aim: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. Design: Critical ethnography. Setting/participants: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. Results: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. Conclusion: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how 'family' is defined in this context is needed.

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Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. Design: Interpretative phenomenological analysis (IPA) was used. Method: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. Findings: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. Conclusions: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. Implications for practice: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

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A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness. Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project. Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture. Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.

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Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services. 

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Longitudinal evaluation of the effects of illness perceptions and beliefs about cardiac rehabilitation on quality of life of patients with coronary artery disease and their caregivers

Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes). 

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Associations of knowledge of Alzheimer’s disease and memory loss and employment status with burden in African American and Caucasian family caregivers

Caring for an individual living with Alzheimer’s disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer’s disease and memory loss and caregiver burden. To fill this gap, a cross sectional, correlational design was employed to collect data from a convenience sample (N = 104) of African American and Caucasian dementia family caregivers. For this study, caregivers ranged from 25 to 89 years of age with African American caregivers possessing significantly lower levels of knowledge about Alzheimer’s disease and other dementias compared to Caucasian caregivers, p <.001. There were 44 caregivers who scored 41 or greater on the Caregiver Burden Inventory corresponding to moderate to severe and higher levels of burden. Results of hierarchical multiple regression models indicated that higher levels Alzheimer’s disease knowledge was significantly associated with lower caregiver burden for all caregivers, B = −0.294, p <.01. Additionally, employment status was significantly associated with caregiver burden. This study highlights the benefits of including disease specific knowledge within educational components of dementia related interventions and programs involving families.

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Caregivers’ causal attributions of their relatives’ mental illness and the association with stigma

Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings. 

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Examining the inclusion of patients and their family members in infection prevention and control policies and guidelines across Bangladesh, Indonesia, and South Korea

Background: Although familial involvement during inpatient care is not uncommon in western countries, the types of caring activities that family members in Asian countries provide are significantly different. These activities may place the family member at risk from a health care-associated infection. This study aimed to examine whether the role of patients' families has been accounted for in the infection prevention and control (IPC) guidelines and policy, using examples from Bangladesh (low-income country), Indonesia (middle-income country), and South Korea (high-income country). Methods: The World Health Organization website and Institutional Repository for Information Sharing, Centers for Disease Control and Prevention website, Australian Government Web Archive, Open Grey, Grey Matters, World Bank, and advanced Google search, as well as the Health Department/Ministry of Health websites for each target country and 4 western countries (Australia, Canada, England, and the United States) were searched. Other databases, such as Embase, Medline, CINAHL, Global Health, ProQuest databases, Google scholar, Web of Science, and Scopus were also searched. This was to review the reflection of the cultural influence in IPC policies/guidelines by reviewing those from the global organizations, which are often used as a blueprint for policy development, as well as those from western countries, which hold different cultures in care arrangement. Search was conducted with attention to the key areas: definition and role of carer in the acute health care facility, involvement of patients/family members in IPC activities, patient and family member hand hygiene, and IPC education. Results: Ninety-two articles were identified based on the criteria for the study. Only 6 acknowledged that care is provided to hospitalized patients by their family members, and only 1 recommended that family members receive the same level of training as health care workers on IPC precautions. Other guides recommended the provision of information on IPC measures as means of patient involvement in the IPC program. Recognition of family caregivers or inclusion of them in the IPC strategies was not included in the target countries' guidelines. Conclusions: Although health care workers are the primary actors when it comes to providing care in acute health care settings, it is important to expand the IPC guides by considering the role of other caregivers. Policies and guidelines should reflect the cultural influence over healthcare. This is especially true when cultural values strongly influence over healthcare arrangements and the healthcare accommodates these cultural influences in the practice. Further work needs to be undertaken on the level of training/education provided to family members in Bangladesh, Indonesia, and South Korea. 

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Palliative Caregivers’ Spirituality, Views About Spiritual Care, and Associations With Spiritual Well-Being: A Mixed Methods Study

Background: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being. Aim: To examine caregivers’ spirituality, religiosity, spiritual well-being, and views on spiritual/religious support. Design: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality’s role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). Results: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P <.001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P =.005) and meditated (P =.006) more following patients’ diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P <.001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care. Conclusions: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met. 

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Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Wha Older person's Palliative Care Model

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Maori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Maori and 39 non-Maori), who cared for 52 family members who died aged over 80 years. A Kaupapa Maori thematic analysis of family/whanau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Wha Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whanau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

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Dementia caregiver intervention development and adaptation in the Vietnamese American community: A qualitative study

Objectives: The purpose of this study was to obtain input and feedback on a proposed intervention to reduce stress and enhance the health of Vietnamese dementia caregivers. Methods: Sixteen semi-structured, in-depth interviews and two focus groups were conducted with a total of 21 key stakeholders (i.e., family caregivers, professionals, and community leaders). Results: Several themes emerged from the data, and these themes fell into two major domains: the first domain was recruitment and engagement into the intervention: (1) importance of faith-based institutions, (2) inclusion of multiple family members in the intervention, (3) community empowerment/ownership, and (4) importance of credibility and trust. The second domain included themes on intervention content: (1) education about Alzheimer’s disease and dementias and (2) tailoring the intervention to caregivers’ needs. Conclusions: Findings indicate that the proposed intervention could be very beneficial to caregivers, but slight modifications needed to be made. 

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"It's just part of life": African American daughters caring for parents with dementia

The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.

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Psychological well-being of Chinese Immigrant adult-child caregivers: how do filial expectation, self-rated filial performance, and filial discrepancy matter?

Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.

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Caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer in Ghana

Introduction Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context. Aim To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer. Methods In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data. Results Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring. Conclusion Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.

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Internalized stigma and its correlates among family caregivers of patients diagnosed with schizophrenia in Changsha, Hunan, China

Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support. 

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Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

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Caregiving centenarians: Cross-national comparison in Caregiver-Burden between the United States and Japan

Background and Objectives: The personal distress associated with caring for a family member has been well documented; however, questions about the burden of caregiving for centenarians and cross-national differences in the caregiving context, remain unanswered. Research Design and Methods: This study includes reports by caregivers of 538 near-centenarians and centenarians in the U.S. and Japan: 234 from the Georgia Centenarian Study and 304 from the Tokyo Centenarian Study. Basic descriptive and multivariate regression analyses were conducted. Mean levels of caregiver burden and near-centenarian and centenarians’ characteristics (as predictors) for caregiver burden were compared between the U.S. and Japan. The near-centenarian and centenarians’ functional capacity and personality were assessed as predictors. Results: Differential predictive patterns in caregiver burden were found in the two groups. In the U.S., near-centenarian and centenarians’ agreeableness and conscientiousness were negatively associated with caregiver burden; whereas the near-centenarian and centenarians’ neuroticism and number of diseases were positively associated with caregiver burden. In Japan, the near-centenarian and centenarians’ activities of daily living, openness, and agreeableness were negatively associated with caregiving burden. Interaction effects between functional capacity and personality, on caregiver burden were observed only in the U.S. In the U.S., higher levels of agreeableness and openness significantly changed the level of caregiver burden associated with vision problems and a greater number of diseases. Discussion and Implications: Cross-national comparative predictors of caregiving burden between the two countries emphasized that caring for centenarians should be understood in the caregiving context, as well as the social context.

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Experiences of Living in the Community for Older Aboriginal Persons With Dementia Symptoms in Taiwan

Background and Objectives Improving quality of life for community-dwelling older persons with dementia symptoms (PWDS) and family caregivers requires promoting dementia-friendly communities (DFC). However, little is known regarding older Taiwanese Aboriginal PWDS' experiences of living in the community. We explored these experiences for older Atayal PWDS and their families in Taiwan. Research Design and Methods This grounded theory research used in-depth interviews to explore the perspectives of older PWDS (n = 4), their family members (n = 3), and key persons (n = 10) in an Atayal community in northern Taiwan. Data were analyzed using constant comparative analysis. Participants were interviewed between January and May 2015. Results Participants' experiences were captured by the overarching concept of "low dementia awareness, high family-like ambience in the community." Despite the low/absent community awareness of dementia, older Atayal PWDS functioned as freely in the community as at home due to a family-like supportive environment. Aboriginal PWDS and their families also faced environmental challenges, e.g., environmental constraints and barriers to transportation access. Discussion and Implications Our results suggest that this Aboriginal community and culture offer important DFC components, and these strengths could be further studied to enhance DFC models elsewhere. Despite these strengths in supporting PWDS, environmental challenges to transportation access still cause difficulties for PWDS and their families and need improvement. The Atayal community's low dementia awareness suggests that services introduced must be culturally appropriate and nondisruptive to existing supportive helping systems. Our study can be a model for future studies to understand and identify PWDS' needs in Indigenous communities.

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Complexity of care: Stressors and strengths among low-income mother-daughter dyads

Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population. 

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Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care

Background and Objectives By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules. Findings Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. Implications Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.

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Cultures of volunteer care? A comparative study of Australia and Denmark

This article seeks to understand two puzzling findings from a comparative study of volunteer care work: that volunteers in Denmark are perceived to be cost-adding, while volunteers in Australia are perceived to be cost-saving; and that volunteers in Australia are perceived to be better than paid workers, while volunteers in Denmark are considered second-best to paid workers. Using a 'cultures of care' framework, this article explores whether these articulations reflect on culturally determined care ideals. The findings suggest that different cultures of care exist. Differences are explained by the development of the two welfare states.

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Their Last Breath: Death and Dying in a Hmong American Community

Hmong Americans have typically been unwilling to use biomedical palliative care for end-of-life needs. This has resulted in confusion and frustration for Hmong patients, families, and nurses. Hmongs' end-of-life care choices for family members usually involve in-home caregiving provided by the family using a combination of biomedicine and traditional healing methods. Health care decisions are made for the patient by the family and community in this familistic culture. A qualitative approach was used to explore the beliefs that ultimately determine end-of-life care goals and strategies for Hmong patients. Semistructured interviews were conducted with 15 family caregivers of terminally ill patients and 5 shamans and Hmong funeral officiants. Several themes affecting care choices were identified, including cultural legacies of the responsibility of end-of-life caregiving by the family, the desire for family privacy in caregiving, and the role of community in the care for the dying, as well as completion of the rituals that ensure the soul of the deceased reaches the afterlife. Suggestions for improving communication between Hmongs and biomedical providers include providing information about end-of-life care beliefs and strategies to biomedical care providers and providing information to Hmong patients and families about hospice and palliative care options and services to support family care.

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Stigma phenomenon to dementia in Iranian population: A phenomenological study

Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method. In order to analyze the data, the Colaizzi's descriptive phenomenological method was used. The target population consisted of all patients with dementia and their family members in neurological clinics of Tehran. We interviewed with patients and one of the main family members until data saturation. Participants included the main family members (spouse and children) of people with dementia (nine women and six men) who were selected by a nonrandom purposeful sampling method. Results: Two main themes emerged from data analysis: dysfunctional beliefs and negative social attitudes. Each main theme integrates the classes and clusters which are constituted by formulated meanings. Conclusion: Dimensions of stigma, such as dysfunctional beliefs and negative social attitudes, in addition to undesirable effects on patients and caregivers lives, is considered as a serious obstacle to effective caring and providing a good quality of life. It can be concluded that, higher levels of awareness, management, and coping with this powerful phenomenon are capable of preventing, rehabilitation, and improving the psychosocial health in elderly population.

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Raising the curtain on stigma associated with dementia: fostering a new cultural imaginary for a more inclusive society

Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.

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Prevalence and predictors of family accommodation in obsessive–compulsive disorder in an Indian setting

Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.

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The "Last Child": Lone Family Caregivers in St. Croix, US Virgin Islands

I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the "lone family caregiver." Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice "care across distance," as it offers an alternative example of how families manage care in the context of migration. 

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Innovating Long-Term Care Provision in Mediterranean Welfare States: A Comparison Between Italy and Israel

Social innovations in long-term care (LTC) may be useful in more effective responses to the challenges of population aging for Western societies. One of the most investigated aspects in this regard is the role of family/informal care and strategies to improve its integration into the formal care system, yielding a more holistic care approach that may enhance opportunities for aging in place. This article reports the findings of a comparative research focusing on the Italian and Israeli LTC systems as representative of the Mediterranean "family-based" care model. To analyze the innovative solutions that have been adopted or are needed to improve LTC provision in these two contexts, focus groups and expert interviews have been carried out in both countries to identify the most relevant challenges and responses to them and to highlight promising policies and strategies to be adopted or up-scaled in the future. These include multidisciplinary case and care management, a stronger connection between prevention and LTC provision, and more systematic recognition of the role and limits of informal caregivers' contributions.

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The Changing Status of Israeli Arab Women as Reflected in Their Role as Main Caregivers

The study evaluated how changes in the status of women in the Israeli Arab sector are perceived in light of the role of women as main caregivers of older adults. Interviews with 25 older adults and 27 family members were conducted. Qualitative analysis consisted of constant comparisons and contrasts of relevant themes. Two main themes emerged from the interviews. The first theme was the expected and actual role of women. The immediate response of most interviewees was the expectation that women are responsible for housework in their own home and in that of their aging parents. The second theme was the changes in the woman’s status in the Arab society. Most respondents noted that women today are very busy, and they sometimes work outside the home. In other words, the themes reflect the conflict between tradition and the rules that were followed in the past, and the changes that have appeared in recent years.

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The Arabic and Hebrew versions of the caregiving ambivalence scale (CAS): examining its reliability, validity, and correlates among Israeli caregivers of individuals with Alzheimer's disease

Objectives: Providing care for family members with Alzheimer's disease (AD) might awaken ambivalent feelings in caregivers. This topic, however, has received little research attention. Having reliable and valid scales is a first step in expanding our knowledge in this area, particularly among different cultural groups, as ambivalent emotions have been found to be dependent on culture. Thus, the aims of this study were (1) to test the reliability and validity of the Caregiving Ambivalence Scale (CAS) among Israeli Jewish and Arab caregivers of individuals with AD and (2) to examine the contribution of caregivers' ethnocultural affiliation (Jewish/Arab) to the experience of ambivalent feelings. Methods: Structured face-to-face interviews were conducted with 370 family caregivers (adult children and spouses) of elderly people with AD. Approximately half of the participants (55.3%) were Israeli Jews (79.5% female; 61.3% adult children; mean age = 65.52), and the rest (44.7%) were Israeli Arabs (87.4% female; 72% adult children; mean age = 54.28). Results: Our findings indicated that the CAS has good-to-excellent internal reliability and validity both in Hebrew and Arabic. Additionally, as expected, ethnocultural affiliation (Jewish/Arab) made a unique - although modest - contribution to the explanation of ambivalence as reflected in the CAS score, with Arab caregivers reporting significantly higher levels of ambivalent feelings than did Jewish caregivers. Conclusions: The CAS is a reliable and valid structured measure to assess ambivalent feelings among Arab and Jewish caregivers of individuals with AD in Israel. Cultural context is a unique factor in understanding their mixed emotions.

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Interrelatedness of Distress Among Chinese-Speaking Patients and Family Caregivers

Background: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery. Objective: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada. Methods: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis. Results: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being. Conclusion: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care. Implications for Practice: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient–family-caregiver dyad needs to be considered as the unit of care.

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The influence of individualistic and collectivistic morality on dementia care choices

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

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"In the Bengali Vocabulary, There Is No Such Word as Care Home": Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

Background and Objectives: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.; Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed.; Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks.; Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

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Impact of HIV and AIDS on rural elderly caregivers in Chiang Mai Province, Thailand

The UN General Special Assembly on HIV/AIDS reported that Thailand's elderly are living on the edge of poverty. Those who become caregivers for the children who have been orphaned by AIDS incur even greater challenges. The 2007 Survey of Older Persons of Thailand (SOPT) concluded that there is a range of financial and social safety nets provided by the government, nongovernmental (NGO), and faith-based organizations (FBOs) to help the elderly caregivers and their families. The research offered limited studies on Thailand's elderly caring for these children. The purpose of this phenomenological study was to explore the social, religious and familial experiences of this population. In-depth interviews were conducted with 14 elderly caregivers participating in the Grandma Cares Program (GCP) located in the province of Chiang Mai. They were asked about their caregiving experiences, cultural and Buddhist beliefs, and programs that help them. Data were verified through member checking with a translator. The details of the caregivers' experiences and environments were transcribed and analyzed with Creswell's 6-step process to identify textural and structural themes and patterns. Results of this study indicated that caregivers gained comfort and strength from Buddha's teachings and cultural beliefs, but they would like more support. 

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An examination of Latino-advanced cancer patients' and their informal caregivers' preferences for communication about advance care planning: A qualitative study

Objectives: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.; Methods: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.; Results: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.; Significance Of Results: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.

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Chinese American Family Caregivers' Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers' perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers' perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers. 

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Caregiving Across Diverse Populations: New Evidence From the National Study of Caregiving and Hispanic EPESE

Background and Objectives: The current study employs population-based data to determine the extent to which stress and coping factors are related to self-rated health and distress for informal caregivers (CGs) from the 3 largest racial/ethnic groups in the United States (non-Latino White, African American, and Mexican American).; Research Design and Methods: Data on primary, informal CGs are obtained from the 2015 National Study of Caregiving (NSOC) (n = 667) and the 2016 Hispanic Established Populations for the Epidemiologic Studies of the Elderly (H-EPESE) CG supplement (n = 287). Logistic regression models of health are presented for all CGs and specifically for dementia CGs.; Results: Caregiving intensity is related to health for non-Latino White CGs and African American dementia CGs. Support from family and friends is related to better self-rated health, but only for African American dementia CGs. While better relationship quality is related to better health for African American CGs and White dementia CGs, formal support utilization is related to worse CG health for Mexican American dementia CGs.; Discussion and Implications: Findings emphasize the importance of earlier detection and intervention with CGs at the beginning in the caregiving career, the interplay of formal and informal support, and appropriate ways to intervene with dementia CGs. Culturally tailored home- and community-based care options are needed to supplement the low levels of CG support, especially for the Mexican American population.

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Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review

Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions. 

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What is the meaning of filial piety for people with dementia and their family caregivers in China under the current social transitions? An interpretative phenomenological analysis

The filial piety model of family centred care has dominated Chinese society for thousands of years. The ways in which filial piety is presented are being modified and modernised as China undergoes social transitions. The study aims to understand the meaning of filial piety for people with dementia and family caregivers. Semi-structured interviews with people with dementia (n = 10) and family caregivers (n = 14) were conducted. Data were analysed using interpretative phenomenological analysis. Three themes emerged: (a) ‘Being filial is a cultural continuity and my future investment’. (b) ‘The changed perception and ways of being filial’. (c) ‘Filial responsibility is a social and cultural convention, but not my personal choice’. This study highlights the importance of cultural values in family care decision making and in shaping filial responsibilities. It indicates that filial obligation can be maintained through social support, even though the nature of filial piety has been changed by social transitions.

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Service use and perceptions of service effectiveness by parents of individuals with intellectual disabilities: comparing Jewish and Arab Israeli parental caregivers

Background: The relationship between ethnicity, service use and perceptions of service effectiveness is inconclusive. This study examined differences in service use and perceptions of service effectiveness between Israeli Jewish (Jewish) and Israeli Arab (Arab) parental caregivers of individuals with intellectual disabilities and dual diagnosis of psychopathology. Methods: Parental caregivers (n = 186) of individuals with intellectual disabilities or dual diagnosis, aged 10 to 30 years, completed a self-report questionnaire. Results: Arab parental caregivers perceived health services to be more accessible than did Jewish caregivers, but there was no difference between the two groups in the use of the services. Overall, greater enabling factors and accessibility were associated with higher use of education and social services. No differences were found between the groups in their perceptions of service effectiveness. Conclusion: Arab family caregivers use education and social services less than do their Jewish peers, possibly because they have fewer enabling resources. The finding that both groups reported similar use of health services may be explained by a shared perception that informal help may not be suitable for dealing with situations of psychopathology. The similar perceptions of service effectiveness may be explained by extensive services available in Israel, to the satisfaction of both groups, or by the fact that participants perceived these services as their only alternative, and therefore fear losing them.

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A Comparison of Rural and Urban Hospice Family Caregivers' Cancer Pain Knowledge and Experience

Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated. Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain. Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience. Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups. Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences.

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Explanatory models of mental illness among family caregivers of persons in psychiatric rehabilitation services: A pilot study

Background: Understanding the explanatory models of family caregivers is particularly important in interdependent contexts like India, where they often play a significant role in the help-seeking behaviours, treatment decision-making and long-term care of those diagnosed with mental illness. Aims: This study was planned to explore the diversity of explanatory models among family caregivers at a centre for recovery-oriented rehabilitation services in South India. Methods: The sample for this study included 60 family caregivers of patients referred to Psychiatric Rehabilitation Services within a tertiary-care hospital for mental health and neurosciences. Bart’s Explanatory Model Inventory, including a semi-structured interview and a checklist, assessed the family caregivers’ explanatory model of distress on five domains: identity, cause, timeline, consequences and control/cure/treatment. Results: The results indicated the coexistence of multiple causal explanatory models including psychosocial, supernatural, situational and behavioural contributors. While 36.7% of the caregivers displayed two explanatory models, 33.3% of the caregivers held three explanatory models and 16.6% of the caregivers endorsed four explanatory models. Caregivers shared their concerns about varied consequences of mental illness but less than half of them were aware of the name of the psychiatric disorder. While they accessed various forms of treatments and adjunctive supports such as prayer, medication was the most frequently used treatment method. Conclusions: The findings have implications for collaborative goal setting in recovery-oriented services for persons with mental illness and their families. 

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The support needs of family caregivers of persons with dementia in India: Implications for health services

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers. Aim This study aims to explore the needs and challenges of family caregivers in Chennai, India. Method Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study. Results The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services. Conclusion The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India. 

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Knowledge Gaps About End-of-Life Decision Making Among Mexican American Older Adults and Their Family Caregivers: An Integrative Review

Introduction: Mexican Americans (MAs) are the largest, fastest growing Latino subgroup in the United States, yet their use of hospice is limited. To better understand this disparity, the authors conducted an integrative review focused on MA caregiving families’ end-of-life (EOL) care decisions. Method: In this literature review, the authors content analyzed results and discussions of 22 research studies focused on EOL decisions, which sampled MA adults at least 50 years old and/or families. The authors used Whittemore and Knafl’s integrative review process, employing constructs from the Ethno-Cultural Gerontological Nursing Model. Results: Topics included attitudes toward hospice, life-sustaining treatment, advance care planning, EOL decision making, perceptions of a good death, and life-limiting illnesses. EOL research for MA caregiving families is meager, largely atheoretical, and rarely validated by subsequent studies. Discussion: Nursing research is needed to extend theory and policy in order to skillfully match EOL care with MA caregiving families’ needs.

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Utilizing evidence-based assessment instruments to detect well-being and distress in English- and Spanish-speaking caregivers of individuals affected by dementia

Objective: The purpose of this study was to examine the most effective and available English and Spanish language caregiver assessments for providers and caregivers. Methods: Assessments were included if they screened for caregiving-related concerns, including stress, depression, and caregiving burden and could be administered directly to caregivers in person or online. Results: Eighteen assessments are designed to assess caregiver burden, distress, depression, and grief. Six did not have psychometric data to support efficacy but are widely used in clinical and research settings. Six were validated in Spanish, and one other is available in Spanish but not validated. Conclusion: As many as 80% of care recipients are cared for in the home by family members who act as informal caregivers. Caregivers of persons with dementia may experience depression symptoms, high caregiver burden, and feelings of being constrained. Due to the lack of psychometric evidence available, the validity of some assessments is questionable. 

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Dementia-friendly community indicators from the perspectives of people living with dementia and dementia-family caregivers

Aims: To identify dementia-friendly communities' indicators and their current conditions in Taiwan from the perspectives of people with dementia and dementia-family caregivers.; Design: This qualitative study explored the opinions and experiences of people with dementia and dementia-family caregivers regarding dementia-friendly communities.; Methods: Participants (16 people with dementia and 20 family caregivers) were recruited from neurological clinics, day care centers for people with dementia and support groups for family caregivers in the Taipei community from July - October, 2016. Data were collected in face-to-face interviews, which were tape recorded and transcribed verbatim. Transcripts were analyzed by Miles and Huberman's (1994) guidelines.; Results: Similar indicators for dementia-friendly communities were identified in Taiwan as in other countries, including dementia-friendly care services, dementia-friendly hospitals, dementia-friendly community environment, dementia-friendly transportation, dementia-friendly stores and shops, dementia friendly people, integrated dementia-related information and community contribution- and -involvement opportunities for people with dementia. However, Taiwanese people with dementia and family caregivers described no emphasis on the potential of people with dementia to contribute to developing dementia-friendly communities and more top-down expectations for the government's role.; Conclusion: These indicators can be a guide for developing and evaluating dementia-friendly communities in Taiwan. Differences between Taiwan and Western developed countries in indicators for dementia-friendly communities can be further explored. Community nursing assessment, interventions and evaluation based on these dementia-friendly communities indicators can be further developed.; Impact: This study developed indicators for dementia-friendly communities in an Asian country. These indicators can be used as a guide for developing and evaluating dementia-friendly communities.

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Caregiving for Older Adults with Limited English Proficiency: Transitioning from Hospital to Home

Background: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers.; Objective: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge.; Design: Cross-sectional.; Participants: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013.; Main Measures: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences.; Key Results: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress.; Conclusion: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.

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Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed. Carers from culturally and linguistically diverse communities experience considerably poorer culturally oriented practices in mental health services. Cultural responsiveness is a relevant framework for social work practice with carers and their relatives with mental illness who are from culturally and linguistically diverse communities.

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Experiences of caregivers of family member with schizophrenia in China: A qualitative study

Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.

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Caregiving, ethnicity and gender in Māori and non-Māori New Zealanders of advanced age: Findings from LiLACS NZ Kaiāwhina (Love and Support) study

Objective: This study investigates sex and ethnicity in relationships of care using data from Wave 4 of LiLACS NZ, a longitudinal study of Māori and non‐Māori New Zealanders of advanced age. Methods: Informal primary carers for LiLACS NZ participants were interviewed about aspects of caregiving. Data were analysed by gender and ethnic group of the LiLACS NZ participant. Results: Carers were mostly adult children or partners, and three‐quarters of them were women. Māori and men received more hours of care with a higher estimated dollar value of care. Māori men received the most personal care and household assistance. Carer employment, self‐rated health, quality of life and impact of caring did not significantly relate to the gender and ethnicity of care recipients. Conclusions: Gender and ethnicity are interwoven in caregiving and care receiving. Demographic differences and cultural expectations in both areas must be considered in policies for carer support. 

Policy Impact: Female predominance in caregiving is a robust finding in ageing studies. That men, particularly Māori men, received more informal care suggests that more research is needed to tease out influential demographic and cultural factors, to underpin equitable carer support services.

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Rural Dementia Caregivers in Southwest Texas: An Exploratory Study of Advance Directives and End-of-Life Proxy Decision Making

For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.

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Understanding Prevention and Management of Coronary Heart Disease Among Chinese Immigrants and Their Family Carers: A Socioecological Approach

Introduction: Health disparities among immigrants exist across socioecological domains. While Chinese immigrants face increased risk for coronary heart disease (CHD) after migration, the reasons are not well understood. Method: This descriptive qualitative study collected 18 semistructured interviews with Chinese immigrants with CHD and family carers from two Australian hospitals. Analysis was guided by the social-ecological model. Results: Poor knowledge and limited English proficiency increased CHD risk and difficulty navigating health care systems/resources. Interpersonal and family factors positively influenced health-seeking behaviors, acceptance of cardiac procedures, adoption of secondary preventive behaviors and information acquisition through social networks. A lack of culturally specific health information and programs in Chinese languages was described. Ethnic concordance between Chinese doctors and patients improved health literacy and engendered trust. Discussion: Culturally specific interventions could include health promotion materials in Chinese, inclusion of family in educational programs, and Chinese-focused public health campaigns about warning signs of heart attack.

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Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.

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Issues and challenges in comparing carers' quality of life in England and Japan: lessons from developing the Japanese version of the ASCOT-Carer

Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This article discusses the issues and challenges in conceptualising and comparing carers’ quality of life in England and Japan, based on developing a Japanese version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting carers in employment is a key concern in both countries, we particularly focus on this group of carers.

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Claiming rights: the future for carers and the need for a radical imagining

Extract: 

In this article, we explore the socio-political chasm that divides recognition and rights. Our focus is the Australian policy context, but many of the social and cultural issues that we identify have transnational relevance. Our own experience leads us to focus on carers of people with a disability, particularly those who provide intensive and long-term care: these carers are typically women whose caring role has occupied them for 70 or more hours per week for at least 15 years, and who face the poorest health and well-being outcomes (Carers NSW, 2014). We argue that those groups that have successfully embraced a rights agenda, such as women and people with a disability, have done so by combining grass-roots activism with a groundswell of theory building by scholars from within these groups with lived experience. We argue that carer advocacy and academic discourse around caregiving must likewise forge a space for carers to narrate their own lived experiences of discrimination and social oppression if the lives of the next generation of carers are to be characterised by the full rights of citizenship and participation, as well as recognition.

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Meaning in Stroke Family Caregiving in China: A Phenomenological Study

Meaning in caregiving plays an influential role in stroke family caregiver's perception and adaptation to caregiving. Although the role meaning plays in stroke family caregiving has been recognized, knowledge about this subject among the Chinese population is fragmented and sparse. Therefore, a hermeneutic phenomenological study was conducted as a first step in a program of research focused on Chinese caregivers utilizing a purposive sample of five stroke family caregivers living in China to explore the meaning of the lived caregiving experience. Data were collected through in-depth interviews and analyzed by a phenomenological hermeneutic interpretation. Meaning in stroke family caregiving was interpreted as suffering, an obligation, a personal choice, a meaningful opportunity, and a natural part of living. These meanings were dynamic and interconnected and were affected deeply by the Chinese culture in how caregivers experience, interpret, and cope with caregiving. Findings highlight the need to understand the culture-shaped meanings in caregiving to better support family caregivers and develop culturally tailored interventions.

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Ageism in informal care network members of older women

Objectives: Negative attitudes toward aging are common among formal healthcare providers, but have been infrequently assessed among informal caregivers providing assistance to older adults. The current study sought to identify factors associated with ageism toward older women.; Design: Multivariate hierarchical linear regression modelSetting:Lower-income neighborhoods in an urban setting in the Midwestern USAParticipants:144 care network members of White and African American women aged ≥ 65 years Measurements: Age Group Evaluation and Description (AGED) Inventory assessed attitudes toward older women; CES-D scale measured depressive symptoms; Intergenerational Affectional Solidarity Scale assessed relationship closeness.; Results: In bivariate analyses, African American caregivers endorsed more positive attitudes toward older women. In the multivariate regression model, attitudes toward older women were associated with care recipient health (β = 0.18, p < 0.05) and relationship closeness with the care recipient (β = 0.23, p < 0.05). However, these associations were fully mediated by care recipient-specific attitude ratings by the care network member. The association between person-specific attitudes and general attitudes was uniquely directional.; Conclusions: Findings from the present study are consistent with past research suggesting that 'ageism' may, at least in part, derive from bias against perceived poor health. Further, our findings of an association between attitude toward the care recipient and attitudes toward older women in general provide support for cognitive psychology theory which emphasizes the role of personal experience in stereotype formation through the availability heuristic. The current study underlines the necessity for development of interventions to address ageism in informal caregivers.

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Realist Review: Understanding Effectiveness of Intervention Programs for Dementia Caregivers

Purpose Caring for patients with dementia is a challenging issue entailing heavy responsibility. Many interventions for caregivers have been developed, but their effectiveness is not clear. This study aimed to examine how, why, and under what circumstances interventions for dementia caregivers affected their burden of caring. Methods Authors used a realist review approach to explore the evidence for how different interventions reduce the burden of dementia caregivers. We completed the literature review about the burden of dementia caregivers and extracted the theoretical concepts to explain context-mechanism-outcome configuration why an intervention may be effective in some situations and not others. Six databases were searched for experimental or quasi-experimental studies conducted from 2008 to 2017. Of 1,225 screened studies, 10 studies were eligible for inclusion. Results None of the studies included all the derived contexts while explaining in detail the mechanism of the intervention effectiveness. Among contexts, the variable of other family members requiring care was not included in all studies. Among the analyzed studies, no studies have applied repeated intervention. Most studies included only some variables of context and mechanism, and these variables did not directly explain the effectiveness of intervention. The effect of outcome variables was significant for each study, and the effects of research intervention and national services could not be separately described. Conclusion Authors conclude that Korean culture's emphasis on relationships with others increases the burden of care. In context, Confucian norms and traditional femininity of Korea were reflected in the core. It is necessary to check the homogeneity of participants and the design of intervention to verify the effectiveness of the outcome variable of psychological burden.

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Are the Elderly Perceived as a Burden to Society? The Perspective of Family Caregivers in Belgium and Kenya: A Comparative Study

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs).; Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya.; Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes.; Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being.; Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.

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The Role and Influence of Prostate Cancer Caregivers Across the Care Continuum

Background: Black men endure a disproportionate burden of morbidity and mortality related to prostate cancer (CaP). Increasingly family members are assuming the role of providing care and support to family members with chronic disease. Understanding the role and influence of the caregiver is a necessary part of developing resources to assist individuals learning to provide care.; Aim: The analysis aimed to explore CaP survivors' perceptions of the role and influence of family caregivers to better understand existing opportunities for improving experiences and outcomes for both the caregiver and the care receiver.; Design: Secondary analysis of qualitative interview transcripts. Data were analyzed to explore new inquiries related to CaP survivors' perceptions of family caregivers' role and influence at each stage of care. Content analysis was used to group data into established categories.; Data Source: Data included qualitative interview transcripts with 32 CaP survivors from the Florida Prostate Cancer Care and Survivorship Project.; Results: The role of the family caregiver is complex. Caregivers in this community seem to have a significant influence on behavior modification and cues to action for Black men with prostate cancer. According to the men in this group, caregivers functioned as normalizing agents, coordinating care and creating a new normal, throughout the various stages of care and survivorship.; Conclusions: Findings inform areas for future research to develop culturally tailored health promotion programs designed to improve outcomes and address the needs of both the family caregiver and the care receiver across the care continuum.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.

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Measuring familism in dementia family caregivers: the revised familism scale

Objectives: Familism is a cultural value that has been shown to be important for understanding the dementia caregiving process. The aim of this study is to analyze the psychometric properties of the Revised Familism Scale (RFS).; Method: Face-to-face assessments were done with 199 dementia family caregivers. Exploratory factor analysis, discriminant validity, and reliability analyses of the RFS were carried out.; Results: The results suggest that the RFS has good psychometric properties and is composed of three factors: "Familial interconnectedness", "Familial obligations", and "Extended family support".; Conclusion: The RFS seems to be a reliable measure of familism, a multidimensional construct measuring a relevant cultural value for dementia family caregivers.

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The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it.; Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.; Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.; Setting/participants:: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.; Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.; Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

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Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

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Exploring caregiving-related experiences among Chinese American and European American family caregivers of persons with mental illness

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

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The Perceived Caregiver Burden Among Turkish Family Caregivers Providing Care for Frail Older Adults

Purpose: The older population has reached to 8.5%, and the prevalence of frailty is reported as 39.2% in Turkey. The purpose of the study was to assess caregiver burden in families who care for frail older adults in Turkish culture.; Method: This descriptive study was conducted in Turkey between June and October 2017. Frail older adults who had no severe cognitive impairment were included. Data were measured using the Older Adult Information Form, Edmonton Frailty Scale, Caregiver Information Form, and Zarit Burden Interview.; Results: In total, 131 older person/caregiver dyads were analyzed; the Zarit Burden Interview mean score was 37.59 ± 18.20. Caregivers with less education and providing care more than 8 hours experienced a higher burden ( p < .05). The severity of frailty significantly correlated with the caregiver scores ( R = .36, p < .01).; Conclusion: The caregiver burden in Turkish family caregivers was found mild to moderate and correlated with the degree of frailty. Policymakers should focus on culture-specific formal caregiver services.

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Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review

Introduction: In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers.; Methods: Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases.; Results: Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills.; Conclusion: Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.

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Informal and formal care preferences and expected willingness of providing elderly care in Germany: protocol for a mixed-methods study

Introduction: In Germany, the number of elderly people in need of care is expected to increase from 2.4 million in 2015 to 3.2 million in 2030. The subsequent rise in demand for long-term care facilities is unlikely to be met by the current care structures and available staff. Additionally, many Germans still prefer to be cared for at home for as long as possible. In light of recent changes, such as increasing employment rates of women and growing geographical distances of family members, informal caregiving becomes more challenging in the future. The aim of this study is to explore preferences for informal and formal care services in the German general population, as well as the expected willingness of providing elderly care.; Methods and Analysis: A mixed-methods approach will be used to explore care preferences and expected willingness of providing elderly care in the German general population. A systematic literature review will be performed to provide an overview of the current academic literature on the topic. Qualitative interviews will be conducted with informal caregivers, care consultants and people with no prior caregiving experiences. A labelled discrete choice experiment will be designed and conducted to quantitatively measure the preferences for informal and formal care in the German general population. People between 18 and 65 years of age will be recruited in cooperation with a (regional) statutory health insurance (AOK Lower Saxony). A mixed multinomial logit regression model and a latent class finite mixture model will be used to analyse the data and test for subgroup differences in care preferences.; Ethics and Dissemination: The study has been approved by the Committee for Clinical Ethics of the Medical School in Hannover. Data will be treated confidential to ensure the participants' anonymity. The results will be discussed and disseminated to relevant stakeholders in the field.; Trial Registration Number: DRKS00012266.

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Development of the Family Stigma Stress Scale (FSSS) for Detecting Stigma Stress in Caregivers of People With Mental Illness

People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.

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Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia. Interviews were audio-recorded and data analysed using Colaizzi's technique. Analysis revealed the essential structure of a caregiver's journey with three major transitions, namely: (1) Crossing the threshold from ordinary world into caregiving world, (2) Trudging on the road of trials and obstacles, and (3) Settling into a new normalcy. Understanding the lived experience of Asian caregivers can help clinicians in targeting relevant support and information, and prepare new caregivers for the demands of their role.

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Influences on the access to and use of formal community care by people with dementia and their informal caregivers: a scoping review

Background: The literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia. Methods: We conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies. Results: A total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics. Conclusions: The access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.

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Turkish Adult Children as Caregivers of Parents with Alzheimer's Disease: Perceptions and Caregiving Experiences

There is substantial evidence suggesting that Western and non-Western caregivers of patients with Alzheimer's disease have different caregiving experiences depending on the cultural values they adopt. Although family-centered constructs such as familism and filial piety have taken some attention, there is still a paucity of research on how cultural values and norms shape caregiving appraisals, coping strategies, and formal service use specifically in Eastern-oriented contexts. The aim of this study was to investigate Turkish adult children caregivers' perceptions of Alzheimer's disease and caregiving experience. Researchers conducted in-depth interviews with 20 primary caregivers and analyzed data with interpretative phenomenological analysis. First, most caregivers viewed family disharmony as the main cause of the disease. Second, although burden is evident in their accounts, caregivers reported positive changes during their caregiving experiences, as well. Third, caregivers employ religious/fatalistic coping and they benefit from social support during their caregiving experiences. Forth, most caregivers opposed to nursing home placement because they view it as a morally improper act; they are afraid of neighborhood pressure; they perceive caregiving as a child's responsibility; they do not want their children to do so; and they do not trust conditions of care facilities in Turkey. Findings indicated that Eastern norms and values might have differential impacts on Alzheimer's disease caregiving outcomes. Hence, we invite mental health professionals to integrate culturally sensitive aspects into the possible intervention programs targeting Alzheimer's disease caregivers from non-Western contexts.

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Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

Objective: Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region. Method: This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims. Results: About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication. Significance of Results: EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

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Vietnamese-American family caregivers of persons with mental illness: Exploring caregiving experience in cultural context

While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.

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Enabling Social Change with Immigrant and Refugee Caregivers: Beyond Dualistic Difference to Intersectionality

A personal narrative is presented which explores the author's experience of participating in a case study of his work for an immigrant and refugee women's health organization in Australia, to deliver multilingual health education and peer support to informal family caregivers in Melbourne, Victoria.

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Women's perspectives on home‐based care for family members with chronic illness: An Interpretive phenomenology study

The number of people with chronic illness who need home‐based care is increasing globally. Home‐based care is socially constructed to be work carried out by women. However, little attention has been paid to the opinions of middle‐aged women caring for family members with chronic illness at home. In this study, Thai women's perspectives on home‐based care for family members with chronic illness using interpretive phenomenology were identified. Fifteen middle‐aged women were interviewed twice, and the data were analyzed using thematic analysis. Four major themes emerged: (i) role obligation; (ii) social life change; (iii) doing good things; and (iv) lack of support. Important findings were that care was considered a woman's duty owing to cultural beliefs. Most participants sacrificed their own needs to care for others, as doing good things is considered an important Buddhist belief. Caring for others decreased women's social networks, but they cared more for their own health. Support with finances, information, workplaces, and care recipients should be provided to women with care responsibilities. These results can help nurses to better understand women's caring roles and the consequences of home‐based care that influence woman's health.

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Applying the convoy model to support in care situations

This article considers the future of informal care situations, with a special focus on how social networks can support caring. Noting demographic changes and the endemic need for informal support, we outline the convoy model of social relations for proactive planning and contemporaneous caring. The article is grounded in empirical evidence, including comparative findings from four countries and about caring among two uniquely vulnerable populations: latelife remarried couples and lesbian and gay adults. Finally, we propose that caring be considered no longer an individual responsibility, but rather a family, community and societal responsibility basic to shared values and societal cohesion.

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The intersection of formal and informal care for older people in a multicultural society: the case of two adult day-care centres in Northern Israel

Despite being a relatively young society, Israel, like many other countries, has not escaped the global ageing phenomenon. About 11% of its population are aged 65 years or older; this compares with an average of 18% in many European countries. About 75% of Israel’s population are Jewish and about 21% are Arabs (CBS, 2017).[...] Despite the fact that more older people – from both communities – are now accepting a mix of support from their families alongside services, families are still the main source of care for older people in Israel (Katz et al, 2015).

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Exploring intergenerational, intra-generational and transnational patterns of family caring in minority ethnic communities: the example of England and Wales

We investigated family caring using established questions from national surveys of 1,206 adults aged 40+ from six minority ethnic communities in England and Wales. We included in our analysis factors that predisposed caring (age, sex, marital status and household composition) and enabled caring (health, material resources, education, employment and cultural values). In the general population, 15% of adults are family carers. Three groups reported lower levels of caring (Black African [12%], Chinese [11%] and Black Caribbean [9%]) and three reported higher levels of caring (Indian [23%], Pakistani [17%] and Bangladeshi [18%]). However, ethnicity predicted caring independent of other factors only for the Indian group.

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'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.

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Engaging men as fathers and caregivers: an entry point to advancing women's empowerment and rights

Engaging men and boys to do unpaid care work is key to achieving gender justice. This article argues that caregiving programmes with men can be effective and serve as an entry point to engage men as allies for feminist agendas. There is a need to increase the uptake and scale-up of such initiatives, while ensuring quality, local contextualisation and ownership, and full accountability to women and girls. Furthermore, such programmes must be connected with efforts to advance women's economic empowerment and rights, challenge social norms around caregiving, transform institutions, and be combined with progressive national policies to recognise, reduce and redistribute unpaid care work.

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Interrogating theories of care in the Indian context

Nussbaum's capabilities approach highlights the need for integrating vulnerability, dependency and care work with liberal principles of individuality and rationality. However, capabilities offer a statist, juridical and formal model of objectified care, whose adoption would lead to greater paternalism, especially in the context of public welfare institutions in India. This article argues that one needs to move beyond liberal theory, while engaging with vulnerability and care work in institutional contexts. It defends informal care as a multilayered practice in public sector institutions in India, to which deliberation is central. It acknowledges the inevitability of flexibility, interdependence, plurality and particularity in informal caregiving practice.

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A caring welfare state in South Korea: challenges and prospects

The purpose of this article is to examine the implications of care ethics in a Korean welfare state. It shows how Confucianism, developmentalism and neoliberalism can both promote and restrict the establishment of a Korean caring welfare state. Despite the fact that these Korean contexts can either support or undercut the development of a caring welfare state, it is clear that none of these contexts places particular importance on the value of care and care relationships. In the Confucian and neoliberal contexts, care is a family or private issue, while developmentalism fails to appreciate care due to its prioritisation of economic development.

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The meaning of care: The social construction of care for elderly people by Bernard Weicht

Weicht’s latest book represents a profound reflection on informal care for elderly people from a social-constructivist perspective – a reflection that also provides a thorough account of gendered practices, power relations and contextual constraints in how care norms, practices and relationships are discursively constructed. 

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Women, work and care in the Asia Pacific Edited by M. Baird, M. Ford and E. Hill

Gender equality is at the centre of government policy agendas around the world. Boosting women’s labour force participation is seen as the key to economic growth and human development in developing economies, and as an important way of managing ageing population crises in advanced welfare states. Yet, there is scant recognition, especially in developing countries, of the significance of care responsibilities in shaping women’s participation in the labour market. Scholars have analysed the connections between gender, work and care in the rich countries of the Global North, but little research addresses the Asia-Pacific – a region that is home to more than half the world’s population and over 40% of domestic workers. In this compelling collection, the editors – Marian Baird, Michelle Ford and Elizabeth Hill – put the spotlight on this diverse and complex region.

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Defining and profiling family carers: reflections from Ireland

The word ‘carer’, meaning family carer, is now widely used, especially in Western cultures. However, it is open to interpretation, is employed differently depending on circumstance, sector and setting, is at times resisted as a label by carers themselves, and is evolving as a term and role. This contribution reviews the term ‘carer’ and how it is understood, with particular reference to Ireland. It begins with a brief overview of evidence about the profile of carers in Ireland, including who they support, and then discusses data from a survey of family carers conducted by Care Alliance Ireland – the survey specifically explored the term ‘carer’ and how it is deployed – and some of the implications of these findings for the provision of support to carers in Ireland.

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Home Alone Revisited: Family Caregivers Providing Complex Care

The AARP Home Alone study in 2012 was the first national look at how families, neighbors, and friends are managing medical/nursing tasks—that is, the complex care associated with administering multiple medications, changing dressings, handling medical equipment, and providing many other kinds of help that were formerly offered by trained professionals.  (See www.aarp.org/homealone.) Seven years later, this Home Alone Revisited study sought a deeper understanding of what family caregivers who perform medical/nursing tasks experience. Employing an oversampling of multicultural groups, it took a closer look at specific difficult tasks, such as managing incontinence, pain, and special diets. It also offered greater attention to resources and outcomes as well as multicultural, gender, and generational experiences. A nationally representative, population-based, online survey of 2,089 family caregivers provided the basis for our analyses. An organizing framework, qualitative findings, and multivariate analyses provided further insights into the stories these family caregivers told us. Their voices led to our recommendations, found in these pages, for professionals, health care organizations, policy makers, and private-sector stakeholders.

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The Relationship Between Mutuality and Health-Related Quality of Life in Adult Child Caregivers in China

The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR 2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers' HRQoL, this was the first study exploring the impact of caregiver-care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.

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The Spiritual Challenges Faced by Family Caregivers of Patients With Cancer: A Qualitative Study

This qualitative study was conducted to investigate the spiritual challenges faced by Iranian family caregivers of patients with cancer. The findings showed, 2 main themes, including "spiritual crisis" and "spiritual coherence", and 6 classes, including "spiritual distress", "disappointment," "faith and trust in God," "praying," "inner peace," and "transcendence."

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Living under a cloud of threat: the experience of Iranian female caregivers with a first-degree relative with breast cancer

Backgrounds Breast cancer is a global threat to all women, especially those having close relatives with breast cancer. Women who were caregivers to relatives with breast cancer are more vulnerable to stress caused by the perception of heightened risk of cancer. Because health measures and breast health are affected by cultural beliefs and social status, information about breast cancer should consider the cultural beliefs and values of the society. Objectives This study explored the experiences of Iranian women who were caregivers to relatives with breast cancer. Methods In this qualitative content analysis study, 21 female caregivers of breast cancer patients were chosen by purposive sampling. Data were collected through interviews and analyzed using content analysis. Results Data analysis developed 3 categories: perception of the concept of risk, changing views about femininity, and management of perceived threat. Perception of the risk of breast cancer increased in caregivers, and they tried to manage the perceived threat. They considered the breast to be an important part of women's lives, and breast cancer in relatives changed their view of femininity. Conclusion Understanding the experiences of breast cancer family caregivers in different cultures can help in planning, counseling, and effective intervention.

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Depression in Family Caregivers of Mexican Descent: Exacerbated by Stress and Mitigated by Mutuality

Despite common assumptions that non-paid family caregivers of Mexican descent benefit spiritually from their roles according to cultural familistic norms, there is also evidence of caregiver stress resulting in depression. Depression has the potential to seriously affect caregivers' health and their ability to continue to provide care. The current study's purpose was to examine the relationships among depression, stress, and mutuality (i.e., the quality of the caregiver-care recipient relationship) ( N = 74 caregivers of Mexican descent in the southwestern United States). Multiple regression models and exploratory mediational analyses indicated that the stress-depression relationship can be significantly mediated by mutuality. Results support culturally appropriate interventions to decrease caregiver stress and depression by promoting mutuality. In addition, with changing trends in outside work roles and mobility of caregivers of Mexican descent, policy should make services truly accessible to support caregiving families of Mexican descent.

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Family caregiving for older Aboriginal people in urban Australia: Disclosing worlds of meaning in the dementia experience

Dementia in Australia’s Aboriginal and Torres Strait Islander population is an area of significant health and community concern. In this article, we use a hermeneutic mode of interpretation to deepen understanding of experience and meaning in dementia for family carers of older Aboriginal people in urban Australia. Specifically, we draw from the hermeneutic concept of “world disclosure” to illuminate the dementia experience in three ways: through an artwork of the brain and dementia; through concrete description of the lived relation of caregiving; and through an epochal perspective on the significance of contemporary caregiving in dementia. Using narrative and visual knowledge, this three-fold approach brings to the forefront the importance of ontological and existential meanings which resonate for Aboriginal families in the dementia caregiving experience. 

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Struggles for recognition and redistribution: family carers and domestic workers in Spanish eldercare

Theories of social justice have identified the revaluation of caregiving work as a global challenge. Still, struggles for recognition are shaped by the specific cultural and institutional contexts in which they emerge. This article explores struggles for the recognition of caregiving work in Spanish eldercare, focusing on advocacy for family carers and for domestic workers. Drawing on interviews, findings reveal that domestic workers' needs are politicised to a greater extent than family carers' needs; empowerment and claims for workers' rights contrast with notions of self-care and mutual support. While the struggles are differentiated, the undervaluation of eldercare is a common theme.

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Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)

Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives.

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Responsibility for child and elderly care: who should cover the costs? A comparison of Baltic and Nordic countries

Using data from the International Social Survey Programme (2012), this study compares public attitudes towards who should cover the costs of caring for children and older people in five Nordic countries (Finland, Sweden, Norway, Iceland and Denmark) and two Baltic ones (Latvia and Lithuania). The study found interesting differences between both groups of nations: citizens from Baltic countries consider the role of the family more important than their counterparts in Nordic countries. Results show Latvians holding the most familistic views in terms of covering costs, and Swedish people the least. Individual socio-demographic variables are less important than national contexts in explaining these attitudes. The article finds important variations among the social-democratic countries and, surprisingly, in the case of childcare, Sweden shows higher differences to Denmark than to Latvia and Lithuania. This finding suggests that the social-democratic bloc in this respect is more heterogeneous than what is generally thought.

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Predictors of quality of life and depression among Korean‐American cancer patients and their family caregivers

Objective This study examined social, cultural, and appraisal factors associated with Korean‐American cancer patients' and their family caregivers' quality of life (QOL) and depression. Methods Data were from Korean‐American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. Results For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. Conclusions Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.

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Dementia and Migration: Family Care Patterns Merging With Public Care Services

This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties. Consequently, health personnel should be wary of stereotyping and generalizing groups through "othering" ideologies and rather try to explore, understand, and adjust to the present and often fluctuating set of needs, as well as be aware of how and by whom these needs are articulated.

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Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond

...this paper explores:

  • Insights into the role and experience of carers in different national contexts
  • Good practice examples of services, organisations and approaches which have sought to improve support to the carers of people with dementia
  • Policy and practice recommendations for key stakeholders such as policy makers, welfare services and employers

Given the traditional focus of Walgreens Boots in the US and the UK (and given very different policy contexts and welfare mixes), the review focuses on these two countries, with additional insights from other countries prominent in the literature and representing different welfare regimes. After searching the literature and following dialogue with UK and US respondents, this includes:

  • Norway (as an example of developments in a Scandinavian system with a comprehensive welfare state, an emphasis on maximising labour market participation and a commitment to gender equality)
  • Australia (as an example of an Australasian country with strong links to the UK)
  • South Africa (as an example of an African country with a younger population but a growing recognition of future needs as the population ages, as well as challenges with HIV-associated dementia)

Throughout the paper, there is an overarching question about the extent to which different countries are ready for the implications of the demographic changes they face, and there are regular textboxes which pose questions to government, to employers, to health and social care, and to broader society to help them reflect on key themes.

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Ethnomoralities of care in transnational families: care intentions as a missing link between norms and arrangements

Building on the distinction between the normative and the negotiable aspects of care, we argue that to understand the social phenomenon of care, we have to analyse not only the moral norms and the care arrangements, but also the intermediary level of intentions. The article presents an ethnomorality of care model combining these three levels. The article explores the case of transnational families (TNFs) of Polish post-2004 EU enlargement migrants with still relatively young parents back in Poland. Care provision for dependent elderly members remains a future challenge in the Polish TNFs, and at this stage it is interesting to inquire plans about the future support for the elderly, especially in the light of Polish predominant (informal) family care regime. We focus on care intentions in which social actors confront moral beliefs with capabilities and construct various social accounts for not following the norm of family care.

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Caregiving as mobility constraint and opportunity: married daughters providing end of life care in northern Ghana

In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities. This article contributes to geographies of care by offering an examination of the mobility constraints experienced by married and externally-resident daughters seeking to provide end of life care to a parent in northern Ghana. Drawing on ethnographic research, I examine how particular familial relationships are embedded with socially constructed labour obligations, leading to conflicting responsibilities at a parent’s end of life. I then consider how a woman as a daughter works to overcome these constraints to provide end of life care. I conclude that understanding the mobility of care providers can contribute to avoiding potentially damaging assumptions of ‘traditional’ norms of care and is an important consideration towards understanding the geographies of care in the rural global south.

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Young-onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance

Objectives: Although dementia typically occurs in older people, it can also emerge in people aged younger than 65 years in the form of young‐onset dementia, the most common type of which is Alzheimer's disease (AD). However, few studies have examined the needs of persons with young‐onset AD (YO‐AD) and their families, and cross‐cultural research on the topic is even scarcer. In response, we investigated the situations, experiences and needs for assistance of carers of persons with YO‐AD in Brazil and Norway. Methods: As part of our qualitative study, we formed a convenience sample of Brazilian (n = 9; 7 women) and Norwegian carers (n = 11; 6 women) in 2014 and 2015, respectively, and analysed data in light of a modified version of grounded theory. Results: Carers' narratives from both countries revealed five common themes in terms of how YO‐AD affected carers' psychological and emotional well‐being, physical well‐being, professional and financial well‐being, social lives and need for support services. Conclusions: The infrequent differences between carers of persons with YO‐AD in Brazil and Norway indicate that carers' problems are highly similar regardless of cultural differences and public services provided. 

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Exploring experiences of informal carers of mental health: Developing community intervention in social work in Jordan

The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.

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Meaning in stroke family caregiving: A literature review

Meaning plays an important role in stroke family caregiving. Understanding meaning facilitates the development of effective interventions that support stroke family caregivers. However, knowledge about this subject is fragmented and sparse. This review fills this knowledge gap by examining existing findings regarding meanings in stroke family caregiving. Specifically, a search of seven databases and a manual search produced a total of five articles for review. Embedded in the lived experience of caregivers, meanings in stroke family caregiving were interpreted as a physical, psychological, and social suffering: an obligation resulting from moral ethics, religion doctrines, others' expectations, and social norms and a subjective choice based on love, hope, and a sense of reciprocity. However, the detailed process of how and when caregivers identify meaning in caregiving needs further exploration. To gain a full picture of meaning in caregiving, more studies should be conducted among stroke family caregivers from different cultural, economic, and social backgrounds.

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Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews ([i]n[/i] = 25), observations of agency home care visits ([i]n[/i] = 9) and analyses of policy and home care agency documents ([i]n[/i] = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. 

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Family caregiving of individuals with traumatic brain injury in Botswana

Background The impairments that affect survivors of TBI impact the person’s independence, and family members frequently have to take on a caregiver role. This study examined the experience of caregiving for individuals with TBI in Botswana and its impact on psychological distress in caregivers. Methods Using a mixed methods study design, qualitative data from semi-structured interviews were thematically analyzed and triangulated with data regarding functional status from the Structured Head Injury Outcome Questionnaire and the Hospital Anxiety and Depression Scale (HADS). Results The study included 26 participants with moderate to severe TBI, and a total of 18 caregivers were recruited. Caregivers commonly reported receiving limited information regarding their relatives’ injuries and management methods. Heavy caregiving demands were placed on them, with little support from the healthcare system. A significant proportion of caregivers experienced anxiety and depression, which was associated with lower functional independence in their injured relative. Somewhat more spouses than parents reported clinically significant anxiety levels. Other consequences of caregiving included social isolation and limited support from the wider community as well as financial difficulties. Despite these stresses caregivers tended to accept their caregiving role. Cultural factors such devotion to their families and faith and belief in God moderated burden and distress. Conclusions Carers of individuals with TBI in Botswana face significant challenges. Rehabilitation efforts need to take these into account. Specifically, more information and support needs to be provided to survivors and their families. Psychological, economic and health needs of the care providers also should be addressed in the planning of rehabilitation interventions.

Implications for Rehabilitation

  • Caregivers of individuals with TBI in under-resourced countries carry much of the burden of care, face many challenges and experience significant stress. 
  • More information and support needs to be provided to survivors of TBI and their families in countries such as Botswana in a culturally sensitive manner.
  • Psychological, economic and health needs also need to be addressed in the planning of rehabilitation interventions, which are currently non-existent in Botswana.
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Young adults with severe intellectual disability: Culture, parent, and sibling impact

Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.

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The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: a qualitative study

Knowledge about family caregivers in rural areas remains sparse. No studies to date have addressed the sociocultural aspects in caregiving, thus neglecting potentially significant data. This study aimed to explore and better understand family caregivers' experiences in rural and urban areas and the sociocultural spheres that these two areas represent. How do family caregivers approach their caregiving situation? A hermeneutical approach was chosen to uncover the underlying meanings of experiences. Open-ended in-depth interviews were conducted. The ontological and epistemological roots are based on hermeneutic philosophy, where a human being's existence is viewed as socially constructed. The study followed a purposeful sampling. Semi-structured in-depth interviews were conducted with 12 rural and 11 urban family caregivers to persons with dementia. These were then analyzed in accordance with the hermeneutical process. The findings provide insight into the variations of family caregiver approaches to caregiving in rural and urban areas of Sweden. There seemed to be a prevalence of a more accepting and maintaining approach in the rural areas as compared to the urban areas, where caregiving was more often viewed as an obligation and something that limited one's space. Differences in the construction of family identity seemed to influence the participants approach to family caregiving. Therefore, community-based caregiving for the elderly needs to become aware of how living within a family differs and how this affects their views on being a caregiver. Thus, support systems must be individually adjusted to each family's lifestyles so that this is more in tune with their everyday lives.

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A systematic review on the factors associated with positive experiences in carers of someone with cancer

The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty‐two articles were included in this review. Analysis identified four overarching attributes: “gender,” “personal resources,” “finding meaning” and “social context.” Despite the challenges associated with caring, this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.

Systematic review registration number: CRD42014014129.

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‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life

Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care. Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. Design: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience. Setting/participants: A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand. Results: Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. Conclusion: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers. 

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Well-being of Sibling Caregivers: Effects of Kinship Relationship and Race

Purpose of the Study: This study examined whether caregiving has a differential effect on the well-being of sibling caregivers relative to other caregiving groups and whether race moderates this effect. Design and Methods: Using the National Survey of Midlife Development in the United States, 631 family caregivers (including 61 sibling caregivers) and 4,944 noncaregivers were identified. Hierarchical regression analyses were conducted to estimate the effect of the caregiver-care recipient relationship and its interaction with race on caregivers’ well-being (i.e., depressive symptoms, self-rated health, life satisfaction, and perceived control over life). Results: Caregivers in general reported poorer well-being than noncaregivers, but sibling caregivers were less affected by caregiving than parent or spouse caregivers. Among sibling caregivers, caregiving took a significantly greater toll on non-Hispanic White caregivers than those from minority groups with respect to depressive symptoms and life satisfaction. Implication: The findings suggest that the experience of sibling caregivers is significantly shaped by their cultural background.

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Implementation of the REACH model of dementia caregiver support in American Indian and Alaska Native communities

The Resources for Enhancing Alzheimer's Caregivers Health in the VA (REACH VA) dementia caregiving intervention has been implemented in the VA, in community agencies, and internationally. As identified in the 2013 and 2015 National Plan to Address Alzheimer's Disease, REACH is being made available to American Indian and Alaska Native communities. Implementation activities are carried out by local Public Health Nursing programs operated by Indian Health Service and Tribal Health programs, and Administration for Community Living/Administration on Aging funded Tribal Aging program staff already working in each community. The implementation is described using the Fixsen and Blasé implementation process model. Cultural, community, health system, and tribe-specific adaptations occur during the six implementation stages of exploration and adoption, program installation, initial implementation, full operation, innovation, and sustainability. Adaptations are made by local staff delivering the program. Implementation challenges in serving AI/AN dementia caregivers include the need to adapt the program to fit the unique communities and the cultural perceptions of dementia and caregiving. Lessons learned highlight the importance of using a clinically successful intervention, the need for support and buy-in from leadership and staff, the fit of the intervention into ongoing routines and practices, the critical role of modifications based on caregiver, staff, and organization needs and feedback, the need for a simple and easily learned intervention, and the critical importance of community receptivity to the services offered.

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Caring for dependent parents: Altruism, exchange or family norm?

The purpose of this paper is to test alternative models of long-term caring motives. We consider three main motives: pure altruism, exchange and family norm. Our database is the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) which allows linking almost perfectly and with complete information children and their parents’ characteristics. Comparing the empirical results to the theoretical models developed, it appears that, depending on the regions analyzed, long-term caring is driven by moderate altruism or by family norm, while Alessie et al. (De Economist 162(2):193–213, 2014), also using SHARE data, stress the importance of exchange motive in intergenerational transfers.

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Gender differences in the long-term care of older parents: evidence from India

This paper examines gender differences in the long-term care of older parents in India by studying the expected provision of care by married sons and daughters. Gender differences in long-term care are important, as the sociocultural environment of India shapes the role of married children. While married sons are expected to provide long-term care for their biological parents, married daughters have limited scope to do so, a tendency that was revealed through our data from Osaka University’s ‘Preference Parameters in India, 2011.’ Other family members are also expected to play a significant role in parental care, while neither gender expects their parents to rely on professional long-term care. This paper contributes to the scarce empirical evidence on long-term care for older parents by married children, as opposed to previous research that has focused on the division of caregiving activities between sons and daughters in general.

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The cost of dementia in an unequal country: The case of Chile

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver’s burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463. Direct medical costs account for 20 per cent, direct social costs for 5 per cent and indirect costs for 75 per cent of the total cost. The mean monthly cost is found to be inversely related to SES, a pattern largely driven by indirect costs. The monthly cost for high SES is US$ 1,083 and US$ 1,588 for low SES. A multivariate regression analysis suggests that severity of dementia and caregiver’s burden account for between 49 and 70 per cent of the difference in the indirect cost across SES. However, between one-third and one-half of the variation across SES is not due to gradient in severity of dementia. Direct medical costs increase in higher SES, reflecting differences in purchasing power, while indirect costs are inversely related to SES and more than compensate differences in medical costs. Moreover, in lower SES groups, female caregivers, typically family members who are inactive in the labor market, mostly provide informal care. The average annual cost of dementia in Chile (US$ 17,559) is lower in comparison to high-income countries (US$ 39,595) and the proportion of cost related to informal cost is higher (74 per cent compared to 40 per cent). SES is a key determinant in the cost of dementia. In the absence of universal access to treatment, part of the social cost of dementia potentially preserves or increases income and gender inequality.

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Informal care for people with chronic psychotic symptoms: four case studies in a San community in South Africa

Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.

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The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

Objective: The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori. Method: Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts. Results: We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner. Significance of results: These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

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An intersectional analysis of male caregiving in South African palliative care

Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.

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Determinants of depression in primary caregivers of disabled older relatives: a path analysis

Background: Despite the large literature analysing factors related to depression, several factors such as caregiving obligation and the interrelationships among the different variables relating to depression have been little studied. The current study aimed to analyse the effect of caregiving obligation (beliefs regarding obligation and social pressure) on depression, and the mediating effects of perceived burden on the relationship between stressors and depression, in primary caregivers of older relatives.

Methods: Cross-sectional study design. A probabilistic sample of caregivers from Spain (N = 200) was used. The data collection was conducted in 2013 through structured interviews in the caregivers’ homes. The measures included sense of obligation for caregiving, perceived burden, stressors and depression.

Results: Depression had a direct and positive association with perceived burden, behavioural problems, and social pressure, and it was indirectly related through perceived burden to behavioural problems, independence for the activities of daily living and beliefs of obligation. 

Conclusions Our results support the multidimensional concept of obligation, suggesting the existence of both an external obligation (social pressure) and an internal obligation (beliefs of obligation); (b) our findings support the hypothesis that external obligation is related to negative caregiving consequences, while internal obligation protects from these consequences; and (c) our findings support the partial mediation of stressors on depression by perceived burden. The relevance of the research to clinical practice includes the importance of understanding the perceived obligation of caregiving related to both internal and external sources of obligation.

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Social Contract on Elderly Caregiving in Contemporary Chile

This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.

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Neuro-oncology family caregivers' view on keeping track of care issues using eHealth systems: it's a question of time

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

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Caregiving for the Elderly Person: Discourses Embedded in the Brazilian Practical Guide for the Caregiver

It is estimated that in 2025, Brazil will have the sixth largest elderly population in the world. Beyond the economic consequences of this projection, this changing demographic portends significant changes in the social realm. The aim of this study was to review and consider a range of government documents, developed during the past thirty years and directed toward elderly Brazilian citizens, to explore the ways that caregivers of older persons are positioned in daily care practices through the discourses such documents deploy. The analysis draws on Foucault’s genealogical approach, and begins with a review of the historicity of policies, regulations, and legislation related to older people, followed by an analysis of the discourses embedded in the Practical Guide for the Caregiver, a document created by the Brazilian Ministry of Health to provide guidance to informal caregivers in the actual provision of care to elders. The analysis shows that throughout the Guide, caregivers are portrayed as multifaceted subjects yet at the same time, three primary positionings for the caregiver and her or his work are emphasized: the almost-angel, the almost-healthcare professional, and the almost-household professional.

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Gender and socio‐economic inequalities in health and living conditions among co‐resident informal caregivers: a nationwide survey in Spain

AIMS: To explore the associations between social determinants, caregiver's network support, burden of care and their consequences in health and living conditions of informal caregivers.

BACKGROUND: The socio-demographic trends regarding population ageing and changes in family models trigger an increased demand for care.

DESIGN: Cross-sectional study based on the 2008 edition of the National Disability, Independence and Dependency Situations Survey (DIDSS-2008) conducted by the National Statistics Institute in Spain.

METHODS: Analyses focused on persons identified as primary caregivers who co-reside with the dependent person. The associations between social determinants of caregivers, burden of care, support network and problems attributed to informal care (impaired health, depression, professional, economic and personal issues) were estimated by fitting robust Poisson regression models. Analyses were conducted separately for women and men.

RESULTS: The study sample included 6923 caregivers, 73% of women and 27% of men. Gender and socio-economic inequalities were found in assumption of responsibilities and burden of caring for dependents, which tend to fall more on women and persons of lower socio-economic level, who in turn have less access to formal support. These aspects translate into a higher prevalence of health, professional, economic and personal problems.

CONCLUSIONS: The study highlights gender and socio-economic inequalities in informal caregiving and its negative consequences. These findings may be useful in the design of policies and support programmes targeting the most affected groups of informal caregivers.

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Helping Carers Care: An Exploratory Study of Factors Impacting Informal Family Carers and Their Use of Aged Care Services

This exploratory study considered the role of informal carers and their decision-making regarding various aged care services that supposedly support their ageing relatives. Consideration was given to the stressors and overall well-being of informal carers and the support services they did or did not receive during their time of caregiving. A questionnaire was utilised to gain exploratory quantitative and qualitative data plus basic demographic information from informal carers who connected with a single caregiver association based in Victoria, Australia. Several themes emerged from the analysis of data regarding carer well-being, carer decision-making and carer relationships-particularly with respect to the various authorities and organisations ostensibly responsible for supporting carers. While the majority of participants indicated a religious association, nevertheless spiritual considerations were not stress factors paramount in their decision-making or their criticism of carer support services. Other concerns dominated such as the need of having appropriate practical support, better case management, organisational transparency and greater recognition of the role of informal carers. Although this research was isolated to a particular locality, carers in similar situations globally have indicated comparable stresses and challenges further indicating that greater accountability and improved organisation are required for the support of carers internationally. Recommendations are suggested for how service providers can support carers-most importantly, the need for ongoing government assessment and government service improvement in order to help carers care into the future.

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Caregiver-proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study

Objectives: This study was designed to determine the caregiver-proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM).; Methods: This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann-Whitney U test, Kruskal-Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05.; Results: The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors' and primary informal caregivers' rated CR scores were all adequate and acceptable (ICC = 0.602-0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers' educational attainment (k = 13.15; p < 0.01).; Conclusion: The I-MSCRIM has acceptable caregiver-proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

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Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress.; Design: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.; Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.; Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

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Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.

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Socioeconomic and Demographic Disparities in Caregiving Intensity and Quality of Life in Informal Caregivers: A First Look at the National Study of Caregiving

Informal caregiving is an integral component of the health care system, saving the national economy more than $522 billion annually. The current study examined how the association between caregiving intensity and caregiver quality of life varies by sociodemographic factors through a secondary analysis of the National Study of Caregiving. Generalized linear models assessed the associations among four aspects of caregiving intensity, three aspects of caregiver quality of life, and key sociodemographic factors. Compared to White individuals, Black individuals had higher levels of overall caregiving intensity (β = 0.293, 95% confidence interval [CI] [0.140, 0.447]), number of instrumental activities of daily living performed (β = 0.060, 95% CI [0.030, 0.090]), and hours spent caregiving per month (β = 0.025, 95% CI [0.002, 0.049]), yet experienced significantly fewer negative impacts on quality of life. Understanding how informal caregiving affects caregiver quality of life is critical to inform public health policies and programs designed to support caregivers and protect this critical component of the U.S. health care system. 

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Characterizing Caregiving Intensity Among Mexican-origin Women Caregivers

Purpose of the Study: Objective (physical) caregiving burden has not often been associated with subjective (emotional) burden among Mexican-origin women caregivers. Yet, many studies show that Latina caregivers suffer from negative psychological outcomes related to caregiving at a higher rate than non-Latino Whites. This study considered whether self-rated intensity of ADL/IADL support explained the relationship between number of care recipient illnesses and caregiver emotional drain among Mexican American women caregivers.; Design and Methods: Participants included Mexican-origin women caregivers (n = 132) in East Los Angeles, CA who completed a survey that asked culturally appropriate questions about their experiences caring for elderly relatives.; Results: Logistic regression models indicated that ADL/IADL supports ranked as difficult were also chosen as causing emotional drain. Mediation models revealed a significant indirect effect of number of care recipient illnesses on caregiver emotional drain for English-speaking caregivers but not for Spanish-speaking caregivers. These results indicate that Mexican-origin women caregivers do experience subjective burden associated with specific objective ADL/IADL supports and suggest that culturally relevant survey design can assist in better understanding the emotional drain among this population.; Implications: Cultural values should be considered when discussing aspects of care provision with Mexican-origin women caregivers in order to elicit an accurate description of their informal caregiving experiences that may contribute to caregiver burden.

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How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms

Aims: Motivated by ageing populations, healthcare policies increasingly emphasize the role of informal care. This study examines how prevalence rates of informal caregivers and intensive caregivers (i.e. those who provide informal care for at least 11 hours a week) vary between European countries, and to what extent informal caregiving and intensive caregiving relate to countries’ formal long-term care provisions and family care norms. Methods: Multilevel logistic regression analyses on data from the European Social Survey Round 7 (n = 32,894 respondents in n = 19 countries) were used to test (a) contradicting hypotheses regarding the role of formal long-term care provisions based on crowding-out, crowding-in and specialization arguments and (b) the hypothesis that strong family care norms are positively related to (intensive) informal caregiving. Results: Prevalence rates of informal caregiving varied between European countries, from 20% to 44%. Intensive caregiving ranged from 4% to 11%. Opposite patterns regarding the role of formal long-term care provisions were revealed: generous long-term care provisions in a country were related to a higher likelihood of providing informal care, but a lower likelihood of providing intensive care. Moreover, intensive caregiving was more likely when family care norms in a country were strong. Conclusions: This study provided support for the specialization argument by showing that generous formal long-term care provisions crowded-out intensive caregiving, but also encouraged more people to provide (some) informal care. Because especially intensive caregiving is burdensome, low levels of formal long-term care provisions might bring risks to caregivers’ well-being and healthcare systems’ sustainability. 

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I just can't please them all and stay sane: Adult child caregivers’ experiences of family dynamics in care‐giving for a parent with dementia in Australia

Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care‐giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers’ distress in the context of caring for a parent with dementia. Semi‐structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers’ lack of choice in adopting the care‐giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care‐giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.

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Perspectives and Insights from Vietnamese American Mental Health Professionals on How to Culturally Tailor a Vietnamese Dementia Caregiving Program

Objective: Little is known about dementia and caregiving among the rapidly growing Vietnamese American population. This qualitative study elicited insights on culturally tailoring an intervention to address mental health needs in Vietnamese American dementia caregivers from Vietnamese American mental health professionals. Methods: Eight Vietnamese American mental health professionals were interviewed to explore: experiences working with and needs of the community; Vietnamese attitudes toward treatment; and acculturation in Vietnamese caregiving. Participants provided recommendations on tailoring a program for Vietnamese dementia caregivers. Content analysis of their responses was conducted. Results: Themes included: a) caregivers’ unique needs and experiences; b) different waves of immigration and acculturation levels affect views on mental health, treatment, and caregiving; c); traditions and beliefs on caregiving; d) mental health, help-seeking and health services; e) how to culturally tailor a program for Vietnamese dementia caregivers; and f) cultural acceptance of the program. Conclusions: An intervention to reduce stress and depression among Vietnamese American dementia caregivers should recognize the special risks of the experiences of war and immigration of the caregivers as well as the pressure of the expectations of the Vietnamese culture on family care. For the program to be acceptable and effective, it needs to consider all aspects of caregivers’ health, and incorporate Vietnamese cultural values/beliefs. Clinical Implications: A successful Vietnamese dementia caregiver intervention should include traditional Vietnamese values/beliefs, holistic experiences, spirituality, and background/immigration experiences. Evidence-based programs may be used with this population if they are culturally tailored. 

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On being a caregiver: The experiences of South African family caregivers caring for cancer patients

The purpose of our study was to describe the experiences of family caregivers of cancer patients using the public healthcare system in South Africa. We used a qualitative descriptive design and conducted in‐depth interviews with 20 purposively selected family caregivers. Data saturation determined the sample size, and qualitative content analysis was used to analyse the data. Three themes arose from the data: emotional responses and feelings towards the cancer diagnosis, fulfilling the role of the caregiver and living and coping with a changed life and a changed person. Caring for a person with cancer was not easy. Participants were overwhelmed with the care responsibilities, which were aggravated by poverty. Some felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. The lives the participants knew changed and they had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person. For some, the sick person they cared for changed and became a person they did not know. Most participants used religious practices to cope with their situation; however, some used other coping mechanisms, such as recreation and even smoking. 

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Allocating Family Responsibilities for Dependent Older People in Mexico and Peru

This paper applies different analytical frameworks to explore processes of family bargaining about providing care for dependent older people in Mexico and Peru. These frameworks include cultural norms, life course effects and material exchange. The paper is based on 19 in-depth qualitative family case studies, which are linked to a wider set of quantitative survey data. Care arrangements and bargaining processes are revealed to be highly gendered, and largely conform to prevailing cultural norms. Rather than neutral and objective, the self-identified role as main carer is found to be subjective and potentially ambiguous. The few men who self-identify as main carers are more likely to play an indirect, organisational role than engage directly in daily care. As such, bargaining mainly relates to which woman performs the main care role, and large family networks mean that there is usually more than one candidate carer. Bargaining can occur inter-generationally and conjugally, but bargaining between siblings is of particular importance. Bargaining is framed by the uncertain trajectory of older people's care needs, and arrangements are sometimes reconfigured in response to changing care needs or family circumstances. Taking the narratives at face value, the influence of life course effects on bargaining and care arrangements is more obvious than material exchange. There are, however, indications that economic considerations, particularly inheritance, still play an important behind the scenes role. [ABSTRACT FROM AUTHOR]

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Effects of filial piety in the experiences of informal caregivers

Informal caregivers are the family members and friends who provide help and support daily to individuals who are temporarily or permanently unable to function independently. They have to engage in a range of activities. They have a long term commitment to the persons they are helping and are usually not paid for their efforts. In certain Asian cultures, there is a peculiar concept that seems to be playing a great role in aiding people to adhere to their responsibility and derive satisfaction from their role of caregiving. This is known as filial piety. It consists of multiple behavioural norms associated with care and support for parents, maintaining family continuity, harmonising family relations, serving community elders and worshipping the ancestors. This belief of filial obligation is often translated into practice to mean that children should ensure that their parents are well cared for in old age. This includes attending to them when they are ill, paying attention to parents' wishes, obeying their preferences, behaving in a way that makes them happy and also bring them honour and respect in the community. Against this background the purpose of the present study is to review the literature on the role of filial piety in informal caregiving. Literature suggests that the role of filial piety in caregiving is both positive and negative, as some caregivers derive satisfaction and high self esteem from caregiving because of high filial piety while some caregivers experience burden if this obligation is fulfilledjust for the sake of face saving. Thus the present review paper aims to throw light on how filial piety effects not only the caregiving arrangements but also the caregiving experiences of informal caregivers in terms of various psychological variables. 

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Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training

Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia.; Methods: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant.; Results: The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031).; Conclusions: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.;

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‘It’s Like Chicken Talking to Ducks’ and Other Challenges to Families of Chinese Immigrant Older Adults in Long-Term Residential Care

Immigrant older adults are increasingly moving into long term residential care (LTRC) homes; however, most were designed and continue to be run in accordance with Anglocentric norms and values. Participation and interest in Family Councils—through which they might collectively voice concerns—was low within our purposive sample of nine Chinese-origin residents living in LTRC homes and 11 family carers. Our study, conducted in two LTRC homes in British Columbia, Canada between January and March 2016, further explored participants’ perceptions of quality of care by staff and quality of life of residents. Our findings negate participants’ rationale that they do not attend because they have no issues to raise. Solutions must recognize that carers’ time is precious and care-work is gendered; language incongruity and failure to address it marginalizes residents and their family members. A culturally informed reticence to speak out is reinforced when attempts to do so are silenced. 

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The complex relationship between household income of family caregivers, access to palliative care services and place of death: A national household population survey

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life. 

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Changing moralities: Rethinking elderly care in Spain

Demographic and social changes in Europe and OECD countries have increased the number of dependents in recent decades, challenging the organisation of health systems and raising calls for re‐definition of long‐term care services. In Spain the crisis of care has challenged a care regime based strongly on the family. Recent social policies have attempted to address this challenge. This article analyses the ideal of family care expressed by women who have traditionally played the role of caregivers. Reflecting a disruption of previously held moral attitudes throughout society, elderly women manifest new expectations in relation to their own care, redefining the scope of filial obligation and linking it to a renewed notion of independency and autonomy. However, in the current context of financial crisis, family care appears not as a choice, but an undesirable consequence of the lack of public policies. The study applies a theoretical approach based on the anthropology of moralities. 

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Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia

Background: Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness.; Aims: This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL).; Methods: The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers.; Results: High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL.; Conclusions: Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.;

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Rural end-of-life care from the experiences and perspectives of patients and family caregivers: A systematic literature review

Background: End-of-life care must be relevant to the dying person and their family caregiver regardless of where they live. Rural areas are distinct and need special consideration. Gaining end-of-life care experiences and perspectives of rural patients and their family caregivers is needed to ensure optimal rural care.; Aims: To describe end-of-life care experiences and perspectives of rural patients and their family caregivers, to identify facilitators and barriers to receiving end-of-life care in rural/remote settings and to describe the influence of rural place and culture on end-of-life care experiences.; Design: A systematic literature review utilising the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.; Data Sources: Four databases (PubMed, CINAHL, Scopus and Web of Science) were searched in January 2016, using a date filter of January 2006 through January 2016; handsearching of included article references and six relevant journals; one author contacted; pre-defined search terms and inclusion criteria; and quality assessment by at least two authors.; Results: A total of 27 articles (22 rural/remote studies) from developed and developing countries were included, reporting rural end-of-life care experiences and perspectives of patients and family caregivers. Greatest needs were informational (developed countries) and medications (developing countries). Influence of rural location included distances, inaccessibility to end-of-life care services, strong community support and importance of home and 'country'.; Conclusion: Articulation of the rural voice is increasing; however, there still remain limited published rural studies reporting on patient and family caregivers' experiences and perspectives on rural end-of-life care. Further research is encouraged, especially through national and international collaborative work.

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The time has come to eliminate the gaps in the under-recognized burden of elder mistreatment: A community-based, cross-sectional study from rural eastern Nepal

Background: Elder mistreatment is a well-recognized public health issue with complex underlying factors. The current study hypothesized that there is no effect of any of the following factors on any type of elder mistreatment: ethnicity, age group, education status, gender, living arrangement, concentration problems, medication for any disease, income level of caregiver, use of alcohol and tobacco products, and dependence on family or caregivers for daily activities. Materials and methods: We conducted a cross-sectional study of 339 elders adults aged 60 or above residing in a rural part of eastern Nepal between August and November 2016. Multi-stage cluster sampling was adopted to select the study subjects. Information was collected using semi-structured questionnaires administered to elderly people by a designated interviewer. Factors associated with elder mistreatment were analyzed using logistic regression. Results: Our findings revealed that 61.7% of 60+-year-olds experienced some form of mistreatment (physical 2.4%, psychological 22.4%, caregiver neglect 57.5%, financial 12.1% and stranger-inflicted 8.3%). Elder mistreatment was associated with the following characteristics of elders: dependent on family for daily living activities, illiterate, experiencing concentration problems, residing in a living arrangement with their son(s)/daughter(s)-in-law, taking regular medications, belonging to the Dalit community according to the Hindu traditional caste system, and residing with a caregiver having a monthly family income of less than NRs. 20,000 (193USD). Conclusions: Our data show that elder mistreatment is prevalent in a rural community of Nepal. Addressing the lower socio-economic or socio-cultural classes of caregivers and elders via community-focused development programs might have significant implications for improving the well-being of elders. 

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The role of pain behaviour and family caregiver responses in the link between pain catastrophising and pain intensity: A moderated mediation model

Objectives: This study investigated the mediating role of pain behaviours in the association between pain catastrophising and pain intensity and explored the moderating role of family caregivers' responses to pain in the link between pain behaviours and pain intensity.; Methods: The sample consisted of 154 chronic pain patients and their family caregivers. Patients completed questionnaires regarding pain intensity, pain catastrophising, pain behaviours and their caregivers' responses to their pain. Family caregivers reported their responses to the patients' pain.; Results: Pain catastrophising was associated with pain intensity (r = 0.37) and pain behaviours partly mediated this association. The positive association between pain behaviours and pain intensity was significant only if patients reported that their family caregivers showed high levels of solicitous (effect = .49) and distracting responses (effect = .58), and if caregivers reported to show high levels of solicitous responses (effect = .51). No support was found for negative responses as a moderator neither based on patients' perception of negative responses nor based on caregivers' perception of negative responses.; Conclusions: The findings are in line with the idea that family caregivers' solicitous and distracting responses convey to patients that their condition is serious, which may reinforce patients' pain and pain behaviours, especially in those who catastrophise.

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A journey without maps—Understanding the costs of caring for dependent older people in Nigeria, China, Mexico and Peru

Purpose of the study: Populations in Latin America, Asia and sub-Saharan Africa are rapidly ageing. The extent to which traditional systems of family support and security can manage the care of increased numbers of older people with chronic health problems is unclear. Our aim was to explore the social and economic effects of caring for an older dependent person, including insight into pathways to economic vulnerability. Design & methods: We carried out a series of household case studies across urban and rural sites in Peru, Mexico, China and Nigeria (n = 24), as part of a cross-sectional study, nested within the 10/66 Dementia Research Group cohort. Case studies consisted of in-depth narrative style interviews (n = 60) with multiple family members, including the older dependent person. Results: Governments were largely uninvolved in the care and support of older dependent people, leaving families to negotiate a ‘journey without maps’. Women were de facto caregivers but the traditional role of female relative as caregiver was beginning to be contested. Household composition was flexible and responsive to changing needs of multiple generations but family finances were stretched. Implications: Governments are lagging behind sociodemographic and social change. There is an urgent need for policy frameworks to support and supplement inputs from families. These should include community-based and residential care services, disability benefits and carers allowances. Further enhancement of health insurance schemes and scale-up of social pensions are an important component of bolstering the security of dependent older people and supporting their continued social and economic participation. 

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Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was 'negotiating participation in decisions'. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients' legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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Family caregiver recruitment via social media: challenges, opportunities and lessons

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media.; Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers.; Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community.; Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

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Communication between nurses and family caregivers of hospitalised older persons: a literature review

Aims and Objectives: To review the literature concerning the feelings, thoughts and behaviours of nurses and family caregivers of hospitalised older persons when they communicate with one another.; Background: Communication between nurses and family caregivers of hospitalised older persons is not always optimal. Improving the frequency and quality of this communication might be a way to make the most of available human capital in order to better care for hospitalised older people.; Design: A literature review was carried out of qualitative, quantitative and mixed-design studies relating to communication between nurses and family caregivers. Findings were analysed thematically.; Results: Family caregiver thoughts, feelings and behaviours relative to nurse control and authority, nurse recognition of their contribution, information received from and shared with nurses and care satisfaction could influence communication with nurses. Nurse thoughts regarding usefulness of family caregivers as care partners and their lack of availability to meet family caregiver demands could influence communication with family caregivers.; Conclusions: The thoughts, feelings and behaviours of family caregivers and nurses that might create positive or negative circular patterns of communication are evidenced. Further research is required to gain a more comprehensive understanding of the phenomenon.; Relevance To Clinical Practice: Nurses must be trained in how to communicate with family caregivers in order to form a partnership geared to preventing complications in hospitalised older persons. Results could be used to inform policy regarding the care of hospitalised older persons.

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NSW Carers Strategy 2014-19: What's new?

FACS development of the NSW Carers Strategy (the Strategy), with assistance from the Ministry for Health and Carers NSW.

Information about the implementation of the Strategy will be published on this page regularly, so please come back to find out what FACS and our partners have been doing for carers. Links to our latest news

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The influence of Chinese culture on family caregivers of stroke survivors: A qualitative study

Aims and Objectives: To explore and describe the caregiving experiences of Chinese stroke caregivers.; Background: Previous research has indicated that culture can have a significant impact on the stroke caregiving experience. Moreover, scant research exists on stroke caregivers' experience within the Chinese culture.;Design: A qualitative descriptive design was used.; Methods: In-depth, semistructured interviews were conducted with 25 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Content analysis was also performed.; Findings: Twenty-five family caregivers of stroke survivors were recruited for the study. On average, respondents were 66 years old (range 45-82 years). Of 25 interviewees, 76% were female, 64% were spouse-caregivers and 36% were children-caregivers. Three themes reflecting the influence of Chinese culture on stroke caregiving emerged from the interviews. (i) Caregiving role perception. Informants accepted caregiving for the sick family member as an expected part of life, a culturally prescribed obligation and an expression of reciprocal love. (ii) Coping strategies. Connecting with family resources and connecting with inner strength were frequently reported coping strategies. (iii) Self-sacrifice. Informants identified self-reliance and feeling of restraint in their utilisation or access of formal caregiving service. Chinese caregivers sacrifice themselves for the care recipients regardless of the hardships and the neglect of their own health.; Conclusion: Our findings provide a comprehensive and culturally sensitive perspective in understanding the experience of stroke caregivers in Chinese communities. Cultural and religious backgrounds were found to influence Chinese stroke caregivers' experience, coping strategies and self-sacrifice behaviour in idiosyncratic ways.; Relevance To Clinical Practice: Research on the practice of culture can serve as a basis for the formulation of specific policies and effective interventions for supporting stroke caregivers of different cultural backgrounds.; © 2017 John Wiley & Sons Ltd.

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Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia

Background: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL.; Methods: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms.; Results: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13).; Conclusion: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.;

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Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London.

Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group).

Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6).

Analysis Data subject to content analysis.

Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying.

Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

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Older people from white-British and Asian-Indian backgrounds and their expectations for support from their children

The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required. Most existing British research on the family support of older people has concentrated on those from the white‐British majority with little cross‐group comparisons. This article reports on in‐depth qualitative research with 17 and 21 older people from white‐British and Asian‐Indian backgrounds respectively. It demonstrates how gender, ethnicity, migration history and a range of other factors interweave in complex manners to affect individuals' expectations for support from their adult children. The findings reveal commonalities and differences within and between groups and demonstrate that the association between expectations of support and resultant sense of well‐being is complicated and is often conditional. Stereotypes within and across groups need to be examined given the observation that while familial norms may be played out differently in different cultural contexts, individuals make sense of and rationalise their expectations for support to take into account the dynamics of changing structures and attitudes.

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Exploring differences in depression, role captivity, and self-acceptance in Hispanic and non-Hispanic adult children caregivers

A variation of the stress, appraisal, and coping model was used to examine the negative and positive consequences of providing care to a person diagnosed with Alzheimer's disease (AD). Data were collected from a sample of 113 Hispanic and non-Hispanic adult children who were providing care to impaired parents. Results showed that the Hispanic caregivers were more likely to be experiencing less depression, lower levels of role captivity, and higher amounts of self-acceptance than the non-Hispanic (White) caregivers. While significant differences between Hispanic and non-Hispanic caregivers were present, results from multiple regression analysis demonstrated that feelings of role captivity were stronger predictors of both negative and positive caregiving outcomes than was the caregivers' ethnic status. The findings of this study indicate a continued need for future research with more diverse groups of AD caregivers in order to develop more culturally appropriate interventions.

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Family carers in stroke care: examining the relationship between problem-solving, depression and general health

Aims and objectives.  The purpose of this article is to describe the problem-solving abilities of Hong Kong family carers looking after a stroke patients at home and report the relationships between their perceived problem-solving abilities with their depression level, general health status, and the functional recovery of stroke patients.

Background.  Previous research on supportive interventions for caregiving in stroke care suggests that enhancing carers’ problem-solving abilities is useful. Nevertheless, not much is known about the relationship between carers’ problem-solving abilities and their physical and psychosocial health and there is notably little work that has been done with the Chinese population.

Design.  A cross-sectional and correlational design was used.

Methods.  A convenience sample of 70 family carers, who were the main carers of stroke patients at home, during the first three months poststroke was recruited to complete a self-report questionnaire.

Result.  Significant correlations were found between the family carers’ global perceived problem-solving abilities and higher level of depressive symptoms (r = 0·35, P = 0·01) and poorer perceived health (r = 0·50, P = 0·01) as measured using the Center for Epidemiological Studies – Depression Scale and General Health Questionnaire. Among the three subscales of the Problem-Solving Inventory, problem-solving confidence showed the highest correlation with these variables. The functional ability of the stroke patients as measured using the Modified Barthel Index (MBI) was not associated with any variables.

Conclusion.  Findings of this study suggest that perception of confidence is a key factor in appraisal of problem-solving among Chinese family carers, which raises questions for future research about the impact of cultural influences on designing and measuring interventions.

Relevance to clinical practice.  The study has implications for nursing and health care practice and for developing interventions targeted at building self-confidence among Chinese carers.

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Memories, identity and homeliness: the social construction of mealtimes in residential care homes in South Wales

Mealtimes in residential care homes are fundamentally social occasions, providing temporal structure to the day and opportunities for conversation and companionship. Food and drink are imbued with social meanings and used to express and create relationships between people. There is a dearth of research exploring care home residents' mealtime experiences in the United Kingdom. This paper reports on particular findings from a qualitative study which investigated factors influencing nutritional care provided to residents in two different types of residential care settings in South Wales, UK. Data were generated through focus group interviews with relevant staff members (N = 15), individual interviews with managers (N = 4) and residents (N = 16) of the care homes and their informal carers (N = 10), observation of food preparation and mealtimes throughout the day, and analysis of appropriate documents. Data were analysed using thematic analysis. This paper's focus is on the ways in which care home residents' experiences and understandings of mealtimes were influenced by various environmental factors, such as the home's geographical location, physical lay-out and ambience. Moreover, the shared meaning of mealtimes for residents, informal carers and staff was constructed from each group's socio-cultural background, family experiences and memories, and was integral to residents' sense of normality, community and identity.

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Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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Gender differences in intergenerational care in European welfare states

Elderly people with functional limitations are predominantly cared for by family members. Women – spouses and daughters – provide most of this care work. In principle, gender inequality in intergenerational care may have three causes: first, daughters and sons have different resources to provide care; second, daughters and sons respond differently to the same resources; third, welfare state programmes and cultural norms affect daughters and sons differently. In this paper, we address the empirical question whether these three assumed causes are in fact responsible for gender differences in intergenerational care. The empirical analyses, based on the Survey of Health, Ageing and Retirement in Europe (SHARE), reveal that parents in need are in fact more likely to receive care from daughters than from sons. Daughters are more responsive to the needs of their parents than sons and respond differently to the same resources. Gender inequality is highest in countries with a high level of intergenerational care, high public spending on old-age cash-benefits, a low provision of professional care services, high family obligation norms and a high level of gendered division of labour. Welfare state programmes reduce or increase gender inequality in intergenerational care by reducing or increasing the engagement of daughters in intergenerational care. In general, care-giving by sons is hardly influenced by social care policies.

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'Habitus and Bureaucratic Routines', cultural and structural factors in the experience of informal care - A qualitative study of Bangladeshi women living in London

This article draws on Bourdieu's notion of habitus to address the interaction between cultural and structural factors in influencing the experience of informal care among Bangladeshi women in London. The authors present a secondary analysis of a qualitative study focusing on the accounts of informal care. The data were drawn from a two-year study with Bangladeshi women aged 35—55. Thirty-two out of the 100 women in the original study were providing care, mostly in isolated circumstances and with little or no formal support. The authors analysed the accounts of these 32 women and in the context of high levels of suffering and distress, three key themes emerged: amplification of suffering, dispositions of duty and religion and entitlements and fields of struggle. The gaps in access to formal support faced by these women suggest that strong cultural and structural forces determined their experience of informal care and the meanings they attached to their role as informal carers. Drawing on the work of Bourdieu and others, the authors suggest that where there is a lack of agency and resistance to support services, the explanation needs to move beyond poor information and language issues to a more rounded understanding of relationship between habitus and conflicts over local fields of welfare.

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Standardization of the Maristán Scale of Informal Care in people with schizophrenia and other psychoses

OBJECTIVE: No instrument has been developed and validated across cultures to measure the degree of support provided by informal carers to people with schizophrenia. We aimed to develop such a measure.

METHOD: The Maristán Scale of Informal Care was developed directly from the views of patients with schizophrenia in six countries. Face-to-face interviews were carried out with participants and 103 were repeated after 30 days. Principal Axis Factoring followed by Promax rotation evaluated the structure of the scale. Horn's parallel combined with bootstrapping determined the number of factors. Cronbach's alpha estimated the scale's internal consistency and intra-class correlation its test-retest reliability.

RESULTS: A total of 164 interviews were undertaken, 103 with re-test. The Horn's Parallel Analysis and the analysis of the Promax rotation revealed one factor. Cronbach's alpha was 0.89. Intra-class correlation coefficient was 0.56 (95% CI 0.42-0.68) and this increased to 0.64 (95% CI 0.51-0.75) after removing two outlying values. Patients from Argentina recorded the lowest scores (poor informal support/care).

CONCLUSION: The Maristán Scale of Informal Care is a reliable instrument to assess the degree of support provided by informal carers to people with schizophrenia across cultures. A confirmatory factor analysis is needed to evaluate the stability of its factor structure. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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Nothing on the Move or Just Going Private? Understanding the Freeze on Child- and Eldercare Policies and the Development of Care Markets in Italy

Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.

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Working with carers in the Bangladeshi community

Focuses on the study conducted by the University of Wales which identifies the social care needs of informal carers for dependent adult relatives from a Bangladeshi community in Wales. Health risk assessment of the community; Assessment of the health care services in the community; Necessity for community nurses to be culturally proficient through the provision of accurate education.

Quality of life measures for carers for people with dementia: measurement issues, gaps in research and promising paths

Background: providing support to a family member with dementia often comes at a cost to the quality of life (QoL) of the carer (caregiver), giving rise to current and future unmet needs for health and social care and support themselves. These have important implications for costeffective health and social care support services and pathways. This article summarises the findings of a scoping review of the literature on QoL measures for carers of people with dementia that was commissioned by the Medical Research Council to address what is ‘state of the art’ in measurement and identification, any gaps in the evidence base, and challenges for further research.

Method: a scope of the literature using Medline and Psychlit (all years) as these are particularly relevant to health psychology was undertaken in March 2013, using combinations of the following keywords: quality of life, measure, scale, caregiver (including carer), chronic illness (the term long-term condition is generally captured under this phrase), dementia, cognitive impairment, Alzheimer’s disease. Results: there is a dearth of carer-reported QoL measures, in contrast to the existence of proxy scales for carers which are used to measure the patient’s/client’s QoL (prevalent in relation to dementia). Several methodological challenges were identified.

Conclusion: caring for people with dementia often has both negative and positive consequences which need inclusion in measures but these may vary by individual and over time. The lack of consensus about what to measure and how in QoL of carers of people with dementia does not help practitioners or service funders. Measures need to be appropriate for younger and older carers, type of carer and caring tasks, and be sensitive to cultural and sociodemographic differences.

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Self-directed support

This audit report examines councils’ progress in implementing the self-directed support strategy in Scotland and their readiness for the Social Care (Self-directed Support) (Scotland) Act 2013. It focuses on councils because they have the lead role, working in partnership with users, carers, third and private sector providers, NHS boards and other organisations. The audit work was carried out between December 2013 and February 2014. It involved a review of a range of published information, case studies in four councils, and interviews with staff and representatives from range of public, private and third sector organisations. The report highlights that councils still have a substantial amount of work to do to fully implement self-directed support. Some have made slower progress than others and they will have to implement the cultural and practical changes more quickly over the next few years. Councils need effective leadership from senior managers and councillors and continued support from the Scottish Government.

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Occupational changes in caregivers for spouses with stroke and aphasia

Introduction: Stroke is a leading cause of disability worldwide. While health services focus on the needs of diagnosed persons, families provide extensive informal care with diverse effects on daily life and health. Understanding caregivers' experience is critical to support their health and sustained contributions. This exploratory study examined how caring for partners with stroke and aphasia impacts caregivers' activities, identifying possible differences according to race/ethnicity through the lens of occupation.

Method: Mixed methods identified the occupational impact of caring for a partner with stroke and aphasia. Twelve participants completed the Carer Communication Outcome After Stroke, Occupational Gaps Questionnaire, Activity Card Sort, and a semi-structured interview.

Findings: The impact of aphasia on caregivers varied greatly. The Occupational Gaps Questionnaire revealed gaps in cultural activities. On the Activity Card Sort, caregivers experienced occupational loss, primarily in low-demand leisure and social activities. Six themes emerged from the interviews: personal factors, finding new equilibrium, participation barriers, compensations for aphasia, uncertainty, and obligations. Trends differed somewhat by race/ethnicity.

Conclusion: Findings have implications for health professionals working with individuals with stroke and aphasia. The caregivers' experience deserves attention to support their quality of life and wellbeing, which can promote sustained assistance for their relatives with stroke.

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Dying from cancer in developed and developing countries: lessons from two qualitative interview studies of patients and their carers

Objective: To describe the experiences of illness and needs and use of services in two groups of patients with incurable cancer, one in a developed country and the other in a developing country.

Design: Scotland: longitudinal study with qualitative interviews. Kenya: cross sectional study with qualitative interviews.

Settings: Lothian region, Scotland, and Meru District, Kenya.

Participants: Scotland: 20 patients with inoperable lung cancer and their carers. Kenya: 24 patients with common advanced cancers and their main informal carers.

Main outcome measures: Descriptions of experiences, needs, and available services.

Results: 67 interviews were conducted in Scotland and 46 in Kenya. The emotional pain of facing death was the prime concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers. In Scotland, free health and social services (including financial assistance) were available, but sometimes underused. In Kenya, analgesia, essential equipment, suitable food, and assistance in care were often inaccessible and unaffordable, resulting in considerable unmet physical needs. Kenyan patients thought that their psychological, social, and spiritual needs were met by their families, local community, and religious groups. Some Scottish patients thought that such non-physical needs went unmet.

Conclusions: In patients living in developed and developing countries there are differences not only in resources available for patients dying from cancer but also in their lived experience of illness. The expression of needs and how they are met in different cultural contexts can inform local assessment of needs and provide insights for initiatives in holistic cancer care.

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Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture.

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Working family carers in Portugal: between the duty and the burden of caring for old vulnerable people

This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.

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Caregiving patterns in rural Andean Colombia

Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.

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Linkages between migration and the care of frail older people: observations from Greece, Ghana and the Netherlands

There are at least four ways in which old age and migration cross each other’s paths. First of all, there are people who migrated for economic reasons, usually at a relatively young age, and who have grown old in a foreign country. Secondly, there are older people who migrate when (or because) they are old: in Europe, they are mostly from the affluent northern countries and travel southward. Thirdly, there is increasing employment of, and demand for, immigrant workers in old-age institutions in the northern countries. Finally, there is the out-migration of young people, mainly from rural areas, that results in older people being left behind without children to look after them. In all these cases, migration has a profound effect on the wellbeing and care of older people. The authors of this article explore a fifth linkage between migration and old age, by focusing on the (mainly illegal) immigrants who take on roles as private carers and, in effect, replace the children who have emigrated. Two cases, from Greece and Ghana, are presented and viewed in the two countries’ political, cultural and economic contexts, and are then compared to conditions in The Netherlands. In both cases, involving a ‘ stranger’ in the care of an older parent is regarded as a good and respectable solution to the problem of absent children and grandchildren: it follows rules of reciprocity and normally provides a good quality of care. Ironically, hiring full-time private care for older people is feasible in low-income countries but a rare luxury in high-income societies.

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Culture change

The number of people from minority ethnic groups who are living with dementia is rising steeply, yet awareness levels and diagnosis rates are worryingly low. An Alzheimer's Society project , The Information Programme for South Asian Families (IPSAF), which provides culturally tailored information information sessions aims to help solve this problem. The service comprises a series of face-to-face sessions which helps carers to build their understanding, knowledge and skills of dementia. An educational DVD is also provided for carers to take home and share with family members. The programme was developed after consultation with 120 people with dementia, carers and professionals.

The Views of Informal Carers' Evaluation of Services (VOICES): Toward an adaptation for the New Zealand bicultural context

The Views of Informal Carers Experiences of Services (VOICES) instrument is a postal questionnaire that has been utilized internationally to capture the experiences of end-of-life care during the last months of life. Aotearoa/New Zealand, traditionally a bicultural society, reflects both the European worldview and that of the indigenous Māori. The Māori collectivist worldview considers whānau (extended family) support as key at the end of life and privileges “kanohi ki te kanohi” (face-to-face) meetings. In such a context, how will VOICES be received? Our pilot study was designed to test the effectiveness of an adaptation of the VOICES questionnaire in the New Zealand social setting for both Māori and non-Māori.

Cognitive interviews were conducted with 20 bereaved whānau and family members whose relative died between January 1 and April 4, 2014, in one urban New Zealand hospital. Thematic analysis was conducted on the resulting transcripts.

We found that, although the questionnaire provides valuable information, administration of the current questionnaire within a bicultural context is problematic. These problems are related to its scope, cultural acceptability, structure, and content. Distribution of the VOICES questionnaire, either through the post or online, without prior consultation, also risks engaging Māori in a culturally inappropriate manner.

These findings will prompt revisions to both the content and research approach to implementing VOICES in a bicultural context. Recommendations include prior consultation with local indigenous communities as well as utilization of a mixed-methods approach to utilizing VOICES in a bicultural context. The cognitive interview procedures employed (adjusted for a collectivist worldview) in this study may also prove useful to indigenous groups seeking to develop or adapt questionnaires within a bicultural or multicultural context.

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The inter-relationship between formal and informal care: a study in France and Israel

This study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.

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Service barriers of Chinese family caregivers in Canada

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.

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Intention and use of long-term care facilities and home support services by Chinese-Canadian family caregivers

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.

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Using the social care framework to analyse research on young carers

Bettina Cass, with Deborah Brennan, Ilan Katz, Catherine Thomson and Deborah Mitchell, and 10 Partner organisations in NSW and South Australia, are undertaking a three-year ARC Linkage Grant project on 'Young Carers: Social Policy impacts of the caring responsibilities of children and young people'. Located at the Social Policy Research Centre (UNSW), the investigators are exploring the interplay between the socio-economic and socio-cultural circumstances in which young people take up caring responsibilities; the policy settings that affect the level and types of care which they provide; and the impacts of care-giving on their participation in education, employment and friendship/social networks. The project will map the gaps in service provision which young carers, their care recipients and service providers identify.

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Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Ethical issues and approval: The study was approved by the National Bioethics Committee and reported to the Data Protection Authority.

Research methods: We explored in 21 interviews the lived experience of 11 young caregivers who had cared for single chronically ill parents, diagnosed with MS.

Results: The participants felt silent, invisible and unacknowledged as caregivers and received limited professional assistance. They were left to provide their parents with intimate physical and emotional care and support that was demanding, embarrassing and quite difficult while feeling unsupported, excluded and abandoned. Their caring responsibilities lead to severe restrictions in life as their parents' disease progressed and they lived without a true childhood; left to manage far too many responsibilities completely on their own and at a young age. At the time of the interviews, most of the participants had left their post as primary caregivers. They were learning to let go of the emotional pain, some of them with a welcomed partner. Most of them were experiencing a healthy transition and personal growth, existentially moving from feeling abandoned towards feeling independent. However, some of them were still hurting.

Study limitations: In choosing participants for the study a sampling bias may have occurred.

Conclusions: Health professionals are urged to provide information, support and guidance for young carers in a culturally sensitive way and to take on the leading role of helping and empowering children and adolescents in similar situations.

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Working together - learning through sharing

Purpose – This paper aims to examine the barriers and enablers to working together in social care, focusing on the experiences of carers and practitioners.

Design/methodology/approach – The project employed a change project method which brings research and practice together to identify a problem, seek ways to resolve it, and develop resources to implement the learning in practice.

Findings – The main findings substantiate much of the existing evidence in this area: the way people are treated by practitioners and services is as important as the outcomes they seek; there is a need to improve understanding and recognition of carer expertise; and there is a tension, for practitioners, between working within resource‐bound systems and implementing a needs‐led and person‐centred cultural service. It demonstrates that when shared learning is focused on action, i.e. learning through doing, relationship‐building becomes an intrinsic part of the process.

Research limitations/implications – The project involved a limited number of participants, and this article shares interim findings only.

Originality/value – The project has used an action‐research approach.

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Focus on home: what time-use data can tell about caregiving to adults

This study analyses data from Statistics Canada's 1998 social survey of 10,749 people to learn more about the nature and situation of Canadian adults providing care at home to other adults. Data included time-use and respondents' sociodemographic, cultural, work, and leisure characteristics, as well as outcome factors. The analyses found 212 respondents (about 2 percent) providing personal, medical, or other care to other household adults on the day studied. Carers were compared to those not found to provide these services. The article explores time-use trade-offs, feelings of stress, and the ramifications of gender, age, and paid work in this newly reemerging use of household space.

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The importance of listening to family carers

This article describes the themes emerging from the author’s anthology of personal accounts of caring for a family member or friend with dementia, ‘Telling tales about dementia’. It explains the importance of family carers and suggests that the knowledge of family carers should be actively sought by professionals delivering services, discussing the barriers of patient confidentiality, examples of important information from family carers being disregarded, and the role of family carers in monitoring care and challenging professionals when necessary. The author asserts that in practice it is rare for family carers to be respected as expert care partners but that when this happens it provides considerable benefits, and concludes that a cultural change is needed in the medical and social care professions to ensure that the contribution of family carers is welcomed and respected.

Ispeek at home

The collection of 1300 picture symbols in ISPEEK at Home provides an easy-to-use and enjoyable tool for overcoming communication difficulties in children with autistic spectrum disorders. The CD-ROM contains symbols for a wide range of situations typically encountered in the home and beyond, from feelings and facial expressions - common problem areas for people with autism - to health and hygiene and holidays. It also provides useful word templates to inspire parents and carers in putting together daily schedules, as well as PDF samples to assist them in setting up visual aids for children with autism, helping them to interact better with their home environment. These culturally various symbols will be a welcome communication aid for parents, carers and other professionals working with people on the autism spectrum at home.

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Cultural adaptation of mental health measures: improving the quality of clinical practice and research

The need for accurate information about the mental health problems of multicultural communities requires valid measures of mental health for use in a number of languages and cultural contexts. Measures of psychopathological symptoms leading to a diagnosis have been especially criticised for their universal application, without attention to their limitations across cultures. Yet, measures are crucial to assess recovery and the performance of services, and to take account of carer and user views. The authors summarise the main challenges in the cultural adaptation of such measures in our work with adults and adolescents of South Asian, African and Caribbean origin.

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Socio-economic status differences in older people's use of informal and formal help: a comparison of four European countries

This study investigates the variations by older people's socio-economic status (SES) (i.e. educational level and social class) in the use of informal and formal help from outside the household in Great Britain, Italy, Belgium and The Netherlands. In all these countries, it was older people in low SES groups who mostly used such help. Multinomial logistic regression analyses showed that, in each country and for both types of help, there were SES gradients in the utilisation of both formal and informal care, and that differences in age, health and marital status largely accounted for the former but not the latter. Cross-national differences in the use of both informal and formal help remained when variations in sex, age, SES, health, marital status, home ownership and the use of privately-paid help were taken into account. Significant interaction effects were found, which indicated that older people in low SES groups in Great Britain and The Netherlands had higher odds of using informal help from outside the household than their counterparts in Italy, and similarly that those in The Netherlands were more likely to use formal help than their Italian peers. The results are discussed in relation to the cultural differences and variations in the availability of formal services among the countries.

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Experiences and health care needs of older people with End Stage Renal Disease managed without dialysis in Thailand during the last year of life

BACKGROUND: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed.

OBJECTIVE: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers.

METHODS: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis.

RESULTS: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services.

CONCLUSIONS: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.

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Supporting South Asian carers and those they care for : the role of the primary health care team

Background: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. Aim: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. Design of study: Qualitative study. Setting: Four South Asian communities in Leicestershire and West Yorkshire. Method: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. Results: Failure to recognise carers’ needs, gaps in service provision, and communication and language issues compromised carers’ ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. Conclusion: South Asian carers’ experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers’ needs are taken seriously and that appropriate services reach them. Keywords: ethnic groups; cultural diversity; carers; primary health care team.

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End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.

Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.

Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.

Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

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Unpaid carers' access to and use of primary care services

General medical practitioners (GPs) and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary-care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A five-fold typology is described covering barriers arising from: professional responses to the carers’ role; the way services are organized and delivered; language or culturally held beliefs and practices; carer or care recipient characteristics; and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals.

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Attitudes and support needs of Black Caribbean, South Asian and White British carers of people with dementia in the UK

Family carers are the most important source of dementia care, especially among ethnic minority populations, who are less likely to access health or social services. The evidence base on the carer experience in these communities is profoundly limited.

To explore the caregiving attitudes, experiences and needs of family carers of people with dementia from the three largest ethnic groups in the UK.

A qualitative study, using a grounded theory approach. In-depth individual interviews were conducted with 32 carers of people with dementia (10 Black Caribbean, 10 south Asian, 12 White British).

Carers were identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology, according to whether they conceptualised caregiving as natural, expected and virtuous. This informed feelings of fulfilment, strain, carers' fears and attitudes towards formal services. The majority of the south Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.

The findings suggest that specific cultural attitudes towards the caregiving role have important implications for how carers can best be supported.

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Informal care in farming families in Northern Ireland: some considerations for social work

This paper is the result of a study of the dynamics of care-giving within farming families in Northern Ireland. It is argued that whilst much is known about informal care, existing knowledge is largely urban based and quantitative, and therefore limited. Following in-depth interviews with 'farm wives' it is concluded that for these women care-giving patterns are dependent on a particular set of cultural expectations and norms. Within farming families there is much resistance to becoming involved with formal social services. Outside help with the care of one's elderly relatives is often seen as an admission of failure, as there is a pride in being able to look after one's family members. Users of social services, which still evoke associations with the Poor Law, are highly stigmatized. It is claimed that for these women the concept of 'carer' has no bearing on their lives and is not something to which they can relate. The paper challenges the depiction of caring as a one-sided difficult relationship where the person being cared for is a passive recipient. It is suggested that caring is not necessarily oppressive but may be rewarding and positive. It concludes that if social workers are to support and facilitate informal care they must be aware of and fully understand the diversity of care provision and the different contexts in which care is undertaken. If intervention is to take place then it must be sensitive to the deeply embedded ideas and perceptions that exist within farming families.

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Spatial Perspectives on Voluntarism in Learning Disability Services in Ireland

Voluntarism has moved to the centre of most western neo-liberal governments' focus in terms of welfare delivery. At the same time, very little of the social policy literature has identified specific historical, cultural and political contexts of place in shaping the particular form of voluntarism and the scale at which it takes place in a country. In order to address policy-related issues of the voluntary sector, a geographical perspective focusing on these local contexts can be very useful in unpacking how the sector can exist across regional and local scales. This article explores the rise of voluntarism in adult learning disability services in Ireland. Ireland experienced the ‘community turn’ much earlier than most Western states, in that the state advocated a ‘hands-off’ approach in learning disability services from the outset. It uses data from 40 interviews with local health agencies, voluntary organisations and informal carers. It critically examines the complex geographical factors that have contributed to the particular form of voluntarism that has evolved, thus demonstrating that understanding levels of voluntary activity requires attention to local circumstances.

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‘I felt I have grown up as an adult’: caregiving experience of children affected by HIV/AIDS in China

Background  The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.

Methods  The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.

Results  Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).

Conclusion  While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.

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Do they look after their own? Informal support for South Asian carers

Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers’ accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.

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Understanding the use of respite services among informal carers

Objective: To examine the use of respite services among carers of non-institutionalised individuals aged 15 and over with either profound or severe disabilities. Methods: Based on data collected from the Australian Survey of Disability, Ageing and Carers in 2003, the investigation evaluated the statistical significance of a number of carer and recipient characteristics on the likelihood of the use of respite services. Further analysis assisted in identifying the support most desired by the majority of carers (88.6%, n=243690) who have never used respite. Results: The results revealed that social and cultural factors played a critical role in the receipt of respite services. Family relationships were important. Just under one-fifth of all primary carers most preferred more financial assistance in their role as caregiver. After controlling for confounding variables it was found that, compared with other forms of assistance, the desire for an improvement in the primary carers? own health was more likely among non-respite users. This may reflect the carers? preference to improve their own capacity to service the recipient rather than rely on others outside the household. Conclusions: Since the recipients under investigation typically possess core communication restrictions and highly individualised needs, it is speculated that carers perceive family members as better able to interpret and meet the sporadic and individualised care demands of recipients. Implications: Given the low usage of respite services among primary informal carers, policy makers and health organisations need to dispel the ?one size fits all? approach to support services for households.

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A qualitative study of the experiences of long-term care for residents with dementia, their relatives and staff

Most older people living in 24-hour care settings have dementia. We employed qualitative interviews to explore positive and negative aspects of the experience of family carers, staff and people with dementia living in 10 homes in London and West Essex, selected to cover the full range of 24-hour long-term care settings. The interview used open semi-structured questions. We interviewed 21 residents, 17 relatives and 30 staff and five main themes were identified: Privacy and choice; relationships (abuse and vulnerability); activities; physical environment; and expectations of a care environment by carers, should they one day live in long-term care themselves. Despite being no longer responsible for the day-to-day care of the residents there was a continuing level of psychological distress among some relatives. We found that residents with a range of severity of dementia were able to participate. The most striking theme from their interviews was the need for choice. All groups talked about improving lines of communication amongst residents, relatives and staff and about the importance of activities. We recommend that homes should set up formal structures for engaging with user and carer views at all levels. This would mean relatives on the board, and regular meetings for residents, relatives, advocates and staff. This should lead to cultural changes where residents are perceived as individuals and care is provided in a more flexible way. There should be a programme of activities in each 24-hour care setting, which all care staff are given time to implement. These activities need to be tailored to the individual resident rather than the whole group.

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How do baby boomers' mobility patterns change with retirement?

Baby boomers will comprise a considerable share of tomorrow's older population. Previous research has indicated higher travel activity and car use amongst baby boomers than amongst older cohorts. However, little evidence exists on the effects of boomers' ageing on the transportation system. To analyse how retirement affects baby boomers' travel and the related future travel demand, we compared three groups, distinguished by employment status as ‘still working’, ‘early retirees’ and ‘recent retirees’, in a longitudinal setting. Data for 864 individuals were collected via standardised telephone interviews in 2009 and 2012. We find a clear tendency towards reducing the car use and mileage over time and as a consequence of retirement. Nevertheless, car use for leisure purposes increased after retirement. Whilst retirement had a bigger impact on men's than on women's car use, those women who continued working had a high car reliance that did not decline over time. This study suggests that retirement is a transition point associated with decreasing car use. Hence, the ageing of the population is likely to have a decreasing effect on transportation demand. However, informal care-giving, prolonged careers and atypical working life, boomer women's changing professional roles, and the emergence of leisure and consumption as major cultural and social frameworks of the third age are likely to make this transition different than observed in previous cohorts.

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Health and Social Care Needs of Somali Refugees With Visual Impairment (VIP) Living in the United Kingdom: A Focused Ethnography With Somali People With VIP, Their Caregivers, Service Providers, and Members of the Horn of Africa Blind Society

Purpose: To explore the health and social care needs of Somali refugees with visual impairment (VIP). Design: We conducted a three-phased focused ethnography in collaboration with the Horn of Africa Blind Society (HABS) through all stages from research design to findings dissemination. Method: Engaging in participatory research, HABS members (n = 26), service providers (n = 10), and two Somali community groups (n = 8 and n = 7) whose members were sighted (Phase 1) took part in four focus group interviews. Phases 2 and 3 consisted of interviews with Somali refugees with VIP (n = 32) and their informal carers (n = 5). We used framework data analysis methodology. Findings: Four major themes emerged: (1) sociocultural perceptions of blindness and visual impairment, (2) access to services, (3) isolation and insecurity, and (4) mobility. Conclusion: Somali people with VIP experience profound unmet social and health care needs related largely to social support, awareness of mobility options, and the stigmatization of visual impairment. Appropriate community outreach may improve access to services and quality of life for Somali people with VIP. Tailored information is needed to increase awareness of mobility and security services. Significant considerations exist when planning discharge from acute care settings to ensure continuity of support.

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Valuing People: family matters ten years on

It is ten years since Valuing People promised a ‘new deal’ for family carers. Valuing People was explicitly concerned to ensure a cultural shift in the way services worked with and conceptualised the role of family carers. It included specific objectives for involving families in local partnership boards, providing better support for them in their caring role and investing in family leadership nationally, regionally and locally. This article considers why there was a need for a more family-focused approach to support. It then discusses the advances over the last decade towards meeting the objectives of Valuing People. It concludes that despite the positive policy developments it would be dangerous to be complacent; there is still a need to continue investing in families and people with learning disabilities to ensure that the gains of the past decade are not lost.

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Expectations of support among White British and Asian-Indian older people in Britain: the interdependence of formal and informal spheres

The discourse surrounding community care characterises informal support being superior to and preferred over formal sources of support, with this distinction buttressed by policy changes. There is a lack of understanding of the interdependence of both spheres of support. This article argues that an individual's experience and expectation of one type of support is often made in relation to his or her understanding, expectation and experience of other sources of support. There is also an urgent need to understand how these associations operate in a cross-cultural context as it is naïve to assume that normative expectations will remain constant when the relationship between family, state and other sources of support are unstable. This article reports on findings emerging from part of a Growing Older study funded by the Economic and Social Research Council of Great Britain to explore the relationship between quality of life and the social networks and support of older people from different ethnic groups. Research involved the use of a questionnaire comprising closed- and open-ended questions. In addition, in-depth qualitative interviews covering the existence and nature of social networks and support, as well as perceptions and expectations of these, were also conducted. This article reports on data relating to a sample comprising seven White British men, 10 White British women, 12 Asian-Indian men, and nine Asian-Indian women aged 55 and over derived from the Family Resources Survey. Findings reveal that the high level of expectation for family support amongst Asian-Indian respondents coexists with a high level of expectation for state support and an acknowledgement that the ideal of family support may not always materialise. Amongst White British respondents, the high level of expectation for state support exists regardless of whether the respondent has satisfactory informal social networks. This expectation is commonly expressed in terms of rights and entitlement by White British respondents but not by Asian-Indians. Associated with this, Asian-Indian respondents display a consistently lower level of awareness and usage of a range of health and social care services. Regardless of the extent of current and past usage of services, however, respondents from both groups overwhelmingly indicate an expectation for the continued provision of such services as they would like to be able to use one or more of these at some stage.

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Family systems and mental health issues: a resilience approach

In many cases the consumers of mental health information and support are the families of mental health sufferers. The aim of the project was to understand resilience in people who live with or support a family member with a diagnosed or undiagnosed mental illness. Participants were 15 carers (one male, 14 female). Semi-structured interviews were transcribed and analysed using content analysis. Eight recurring themes emerged which indicated the challenges the carers faced and provided indications of the positive and negative personal, family and social factors that impacted on their lives. These themes were ‘Getting to CLAN WA’, ‘Accessing help including CLAN WA’, ‘Impact of living with a person who has a mental illness or problematic behaviour’, ‘Family and cultural issues’, ‘Communication within the family’,‘Coping strategies and evidence of resilience’, ‘Social support’ and ‘Notion of sacrifice’. There is still considerable work to do in supporting people who live with or support a family member in these circumstances. The findings demonstrate that individuals living with adversity can do more than just survive the process.

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‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

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Cultural competency: professional action and South Asian carers

Inequality and exclusion are characteristic of the experience of UK South Asian communities. In health care, community needs are often not addressed by health and social welfare services. An increase in cultural competency is now part of identified policy. The aim of this paper is to examine the extent to which there is evidence of cultural competency amongst professionals concerning South Asian parents caring for a person with cerebral palsy. Semi‐structured interviews were conducted with respondents from 19 service organisations. Results are presented on perceptions of service delivery and on the dynamics of service development: evidence is found that inadequate service delivery continues despite professional knowledge that it exists. Conditions necessary for the achievement of cultural competence are discussed. We suggest that service development to meet the needs of South Asian carers must form part of an overall strategy geared to change at different levels within and outside service organisations.

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Five sources of hope for the deeply forgetful: dementia in the twenty-first century

At this point of time, two decades after intense biological research into dementia began, we need to reassess our perspective on hope, and understand the need for some redirection toward the larger questions of care when no cure is in sight. It does seem appropriate to focus more of our hope and possibly resources on care itself, and on the creation of attitudinal shifts toward the affirmation of the deeply forgetful. There is no compound available yet that promised to slow or cure dementia. We can have hope in dietary modifications that may delay onset; compassionate carers who manifest our deepest sense of a shared humanity despite cognitive decline; the increasing evidence for enduring selves beneath the chaos of neurological devastation; and the possibilities of a spiritual–cultural evolution toward acceptance, affirmation, and connection with the deeply forgetful. This paper will discuss and critically assess these sources of hope in the world of the deeply forgetful.

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Youth South Asians with learning disabilities: still socially excluded?

This paper report on a study undertaken in Glasgow of young South Asian people with learning disabilities and their carers, and explores the extent to which they are socially excluded. Although there is an increasing political emphasis on the inclusion of people with learning disabilities, the families concerned continue to experience isolation, both socially and in terms of service provision. Access to service is often problematic, because of linguistic and cultural barriers and families appear to be reluctant to use day centres. Young people with learning disabilities themselves feel stigmatised, while carers are in need of support, and also apprehensive as to the future care of their children. Although government is promoting a range of relevant initiatives, young South Asians with learning disabilities continue to be an excluded group.

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Families as partners in care: perspectives from AMEND

This article is an illustration of Indian families as caregivers who are direct sufferers due to family members affected by mental illness such as schizophrenia, and other psychiatric disorders. The practical aspects involved in the caregiving role of Indian families make them inevitable partners in care besides projecting a unique model to the other family support groups across the world. The discussion on barriers and gateways to the partnerships role of family provides an insight into the cultural dynamics of care in a country like India.

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‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services

Home-care re-ablement is a short-term, intensive service that helps people to (re-) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home-care re-ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi-structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re-ablement services in England. The interviews formed part of a larger, mixed-methods study into the immediate and longer term impacts and cost-effectiveness of home-care re-ablement services. There was clear evidence that interviewees felt that they had benefitted from re-ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re-ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re-ablement at the centre of analysis, this paper concludes that re-ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users' own priorities and concepts of independence.

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Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS

This paper reports on the three initial steps taken to develop the World Health Organization's Quality of Life instrument (WHOQOL) module for assessment of persons living with HIV/AIDS (PLWHA). First, a consultation of international experts was convened to review the suitability of the generic WHOQOL-100 for assessment of PLWHA. The experts proposed additional facets that are specific to the lives of PLWHA. Second, 42 focus groups (N=235) were conducted by six culturally diverse centres--comprising of PLWHA, informal carers and health professionals--to (1) review the adequacy of the WHOQOL for PLWHA, (2) review the additional facets proposed by the experts, and (3) write additional facets and items for a pilot instrument. Third, results of steps 1 and 2 were consolidated, and a total of 115 items, covering 25 new facets and sub-facets for assessment of QoL specific to PLWHA, were prepared for pilot testing. The new facets included symptoms of HIV, body image, sexual activities, work, social inclusion, disclosure, death and dying, and forgiveness. The implications of cross-cultural QoL assessment for PLWHA are discussed.

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Sociocultural context of nutrition in care homes

Susan Philpin and colleagues explore residents’ eating and drinking experiences to help nurses better meet the dietary needs of older people in other settings

Aim To investigate factors that influenced nutritional care provided in two different types of residential care settings.

Methods The study used qualitative methods, including focus group interviews with relevant staff members, individual interviews with managers and residents of the care homes and their informal carers, observation of food preparation and mealtimes throughout the day and analysis of appropriate documents.

Findings Data were analysed thematically, and this article describes one of the four main themes that emerged: the relationship between social context and residents’ eating and drinking experiences.

Conclusion Greater understanding of the sociocultural context of eating and drinking in residential care settings may be used to inform nursing practice in relation to meeting older people’s nutritional needs in other settings.

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Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature.

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A migrant family's experience of palliative care: a qualitative case study

The aim of this study was to explore the lived experience of palliative nursing care for different generations of a migrant family in the New Zealand context. Methodology used was an intrinsic case study. The twin threads of the family's region and their immigration experience influenced their experiences and their ways of coping in the four domains of family relationships, the support they received from their community, their ability to communicate, and their relationship with palliative care services. Palliative care was by a family approach with strong community support and empowered by culturally safe and appropriate nursing practice. This study explored the underpinnings of culturally safe palliative nursing care.

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The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the lite

Background: Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption. Methods: The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children. Results: HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate. Conclusion: The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.

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Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents' narratives

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.

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Validation and psychometric assessment of a short clinical scale to measure chemotherapy-induced nausea and vomiting: The MASCC antiemesis tool

There is a lack of clinical tools to facilitate communication between clinicians and patients about chemotherapy-induced nausea and vomiting (CINV). The Multinational Association of Supportive Care in Cancer (MASCC) has developed such a tool, which is an eight-item scale for the assessment of acute and delayed nausea and vomiting, and is completed once per cycle of chemotherapy. The aim of the current study was to assess its psychometric properties, specifically reliability and validity, cultural transferability and equivalence, and congruence with proxy assessments, as well as to determine if accuracy of recall of CINV events using the MASCC Antiemesis Tool (MAT) differed over time from chemotherapy. A prospective study was carried out with adult cancer patients and their informal carers from two hospitals, one each in the United Kingdom (UK) and United States of America (U.S.). Patients completed the Rhodes Index for nausea, vomiting and retching (INVR) daily for the first five days after chemotherapy and were then asked to complete the MAT at one week, two weeks, or three weeks after chemotherapy. Carers completed an adapted MAT concurrently with patients. The sample consisted of 87 patients and 22 informal carers. The internal consistency reliability of the scale was high, with Cronbach alphas of 0.77 (patient sample) and 0.82 (carer sample). Responses were similar between the UK and U.S. samples in terms of nausea and vomiting, and both samples found the scale easy to use. Contrasted-groups validity (using age as a grouping variable) and concurrent validity (MAT compared with INVR) suggested that the scale is sensitive to detect the different dimensions of CINV and performed well against a daily assessment of nausea/vomiting (total score correlation r=0.86, P<0.001). Recall of events was high even three weeks after chemotherapy (correlations with INVR of 0.44–0.99, all P<0.01). Factor analysis clearly identified three factors, namely vomiting, acute nausea, and delayed nausea. Proxy assessments by carers were congruent with the patients' responses, especially in relation to vomiting. The MAT is a reliable, valid, clear, and easy-to-use clinical tool that could facilitate discussion between clinicians and patients about their nausea and vomiting experience, thereby potentially aiding treatment decisions. Regular assessment of nausea and vomiting after chemotherapy has the potential to significantly improve CINV management.

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Standardised measures of needs, stigma and informal care in schizophrenia using a bottom-up, cross-cultural approach

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments. Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items). Conclusions These instruments are based on service users' and carers' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.

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The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving

This paper is a report of a study conducted to identify the conditions that favour the relief of the burden of female caregivers of relatives with advanced dementia. Respite services are a response to caregivers' needs for rest. Although they are wanted and needed services, caregivers do not always have access to or use them. The need for a caregiver-centred approach to relieving the burden of care is a conclusion which respite researchers are increasingly reaching. The method was, grounded theory was chosen as the research strategy. Twenty-two female primary caregivers of relatives with advanced dementia participated in semi-structured interviews between November 2006 and May 2008 in Spain. Data collection was guided by the emergent analysis and ceased when no more relevant variations in the categories were found. The findings were, while having a rest is legislated as a right in civil and religious laws in family care in Spain, it should meet certain conditions that in the caregiver's eyes legitimate it. In the present study these were: (i) when there is no abandonment, (ii) when others are not harmed, (iii) when having a rest is obligatory and (iv) when having a rest is acknowledged. Conclusion. Many caregivers experience ambivalence over accepting respite. Nurses should assess caregivers’ situations and promote context-specific interventions and a relief of burden free from guilt. Exploration of the conditions that favour the relief of burden within other cultural and caregiver groups is recommended.

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Ethnicity and family support

'They look after their own' is a phrase with which we are all familiar but to what extent do ethnic and minority groups care for and support for their family members? Given the current focus on carers, Rosalind Willis in this article presents the findings of a preliminary study into ethnicity and family support, and highlights that what is generally defined as 'support' may perhaps be interpreted differently within and because of different cultures. 

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'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse

Understanding dementia is a pressing social challenge. This article draws on the ‘Dementia talking: care conversation and communication’ project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets – a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A ‘panic-blame’ framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia ‘preventative’ behaviour in media discourse is problematic, especially in comparison to other more ‘controllable’ and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.

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A review and commentary of the social factors which influence stroke care: issues of inequality in qualitative literature

Stroke is the third most common cause of death in the UK and a major cause of adult disability. Stroke services have long been criticised for being deficient and there is evidence that some aspects of care provision vary across different population groups. While there is information about the patterns of service provision, questions remain about processes which might underlie these variations. The present paper sought to assess how well the processes which might lead to inequity in the delivery and uptake of stroke services are currently understood by reviewing the qualitative literature in the area. The review was carried out by systematically searching online literature databases, using keyword and bibliographical searches, within a particular time frame. In total, 55 articles were reviewed, including studies related to primary and secondary clinical care, as well as social care. Articles focused on both professionals’ and patients’ perspectives. The review reports the cultural factors and processes which have been identified as possible causes of barriers to professionals’ delivering stroke services, as well as issues which influence patients’ uptake of services. Issues identified in the literature were categorised into four broad thematic areas: conceptualisations of stroke illness and ageing, socio-economic factors, resource allocation and information provision. These themes are then revisited through the hypothesis that the concept of social and personal identity could cast new light on our understanding of how inequity in stroke care provision might arise. It is argued that the ways in which professionals and patients view themselves and each other influences their interaction, and in turn, the delivery and demand for services. Finally, the authors suggest areas where further research is warranted.

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Carers' experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services

Background: Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.

Methods: Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.

Results: Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.

Conclusions: This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.

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Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client–caregiver–provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs–ignoring own needs, (2) feeling connected–feeling isolated, and (3) juggling to manage–struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.

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Support needs of carers of dependent adults from a Bangladeshi community

AIM: This paper reports a study identifying the health and social care needs of informal carers for dependent adult relatives from a Bangladeshi community in South Wales and their views on the acceptability and appropriateness of formal support services provided by statutory, private and voluntary sectors.

BACKGROUND: Within the next 20 years in the United Kingdom the proportion of older people from black and ethnic minority communities will dramatically increase and there will be an increased demand for carers. Asian carers, particularly Bangladeshi carers, are one of the most neglected and invisible groups. As carers are fundamental to the success of community care and their importance is increasingly recognized, caregiving within Asian communities needs further exploration.

METHODS: A qualitative study with individual focused interviews was conducted with 20 Bangladeshi carers, using a combination of purposive and snowball sampling. Maxwell's dimensions of acceptability and appropriateness of quality of care were applied to aid understanding of the findings.

FINDINGS: Families primarily cared for Bangladeshi dependent adults and viewed the experience positively, although they were providing care under challenging circumstances. There was a lack of awareness of the health and social services available to assist carers, and limited involvement of community nursing and social services. A tension was identified in accepting some types of formal support, and ethnocentrism in service provision was evident.

CONCLUSION: Institutional barriers to accessing formal support, such as the inability to meet religious and cultural needs, must be addressed if Bangladeshi carers are to be provided with services which are acceptable to them. Primary care providers, including community nurses and health visitors, need to work in partnership with the Bangladeshi community if services are to be acceptable and appropriate for meeting the needs of these hidden carers.

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The quality of life of female informal caregivers: from Scandinavia to the Mediterranean Sea

We analyse the impact of the provision of care on the health and quality of life (QoL) of adult female informal caregivers using a representative sample drawn from the survey of health, ageing and retirement in Europe (SHARE). We match each informal caregiver with a non-carer using propensity score matching and test whether matched individuals differ on self-assessed health and a functional indicator of QoL and whether this relationship differs across European regions. We find a North–South gradient both for self-assessed health and QoL, and our results show that the provision of caregiving to close relatives in Europe impacts on the caregivers’ QoL and health in a way that depends on their geographical location, the degree of formal care and specific cultural and social factors of the area. We find that informal caregiving is a complex phenomenon which may bring both psychological rewards and distress to providers of care and this complexity, along with the geographical gradient highlight the importance of ensuring that policies match the needs of individual carers in their own geographical areas and cultural contexts.

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The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

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The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed. A combination of descriptive statistics and qualitative analysis of these data revealed that social and cultural factors formed the basis of patients’ and informal carers’perceptions of cardiovascular risks and social information networks provided the main source of informationabout cardiovascular risk. For the staff, known risk factors based on epidemiological evidence (lack of exercise and diet) formed the basis of their perceptions of the patients’ cardiovascular risk factors. However, for all the participant groups (i.e. patients, informal carers and staff) the risk factors – diet and exercise were indicated as being the patients’ intended lifestyle changes., The results illustrate potential interplay between ‘social’ and ‘cultural’ context and perceptions of cardiovascular risk and incongruency between perceptions of risk and perceptions of the patients’ intended lifestyle change. These results may assist nurses in giving effective advice to patients and relatives about lifestyle change following myocardial infarction and inform future policy for cardiac rehabilitation.

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Exploring identity in the 'figured worlds' of cancer care-giving and marriage in Australia

Following changes in the structure and funding of the Australian medical system, patients have become consumers' or clients'. Family and friends have become carers' or caregivers', signifying their increased responsibilities as patients move from hospitals to communities. While policy makers embrace the term carer', some argue that the title is not widely recognised and has disempowering connotations. This paper examines spouses' reflections on the term carer' based on qualitative interviews with 32 Australians caring for a spouse with cancer from a study conducted between 2006 and 2009. Recruitment involved survey and snowball sampling. Following a grounded theory approach, data collection and analysis were performed simultaneously. Using Holland and colleagues' sociocultural identity as practice' theory and a thematic approach to analysis, findings depict identification with the spouse' and carer' label as relationally situated and dependent on meaningful interaction. Although others argue that the term ‘carer’ is a ‘failure’, these findings depict identification with the label as contextual, positional and enacted, not fixed. Furthermore, and of most significance to practitioners and policy makers, the title has value, providing carers with an opportunity to position themselves as entitled to inclusion and support, and providing health professionals with a potential indicator of a spouse's increased burden.

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Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation

Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.

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Review of the literature on the effects of caring for a patient with cancer

Objective: To adequately help family caregivers (FCs) of cancer patients, clinicians need to understand the complexity of the problems and responsibilities associated with cancer patients illness that FCs experience. Methods: This systematic review identified the types of problems and burdens that FCs of cancer patients experience during the patient's illness. We also analyzed the language caregivers use to communicate their problems and responsibilities related to caregiving for the cancer patient. Results: Of 2845 titles identified, 192 articles met the inclusion criteria and are included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified. Conclusion: A substantial evidence base supports the conclusion that FCs experience many difficult problems and increased responsibilities during and after the patient is undergoing treatment and rehabilitation for cancer. The insights gained from this review will help researchers and clinicians to understand the complexity of problems and responsibilities FCs experience. This understanding may encourage them to include support for FCs as part of total or holistic patient care. However, more research is needed to better understand the variations in caregiving experiences over time; how the caregiving perspective is influenced by different cultural, ethnic, or socioeconomic backgrounds as well as gender and age; and how problems and responsibilities related to caregiving interfere with daily life. Copyright © 2009 John Wiley & Sons, Ltd.

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Family support for older people in an area of demographic change and policy constraints

This paper introduces the Special Issue of four empirical studies on the provision of family support to older people that have been written members of the Family Support for Older People: Determinants and Consequences (FAMSUP) network. They have in common the use of individual-level data and recognition of the importance of demographic forces, cultural variations and public policy in shaping patterns of elder care. The four papers are also explicitly comparative, and emphasise both between- and within-country differences. The European countries examined by the FAMSUP researchers exhibit several broadly similar demographic trends, but these are superimposed on very different policy regimes. The ‘macro’ focus of much comparative policy-oriented research facilitates the identification and description of population ageing, while illuminating the policy issues raised by demographic change. A macro-focus is also characteristic of much comparative welfare-state analysis. The ‘micro’ orientation of the research presented in this collection typically treats the policy environment as an implicit or residual category. We argue that progress in understanding comparative patterns of elder care, and in developing policy responses to demographic change, will be facilitated through blending the macro and micro perspectives, in which variations in the policy environment are explicitly linked to individual- and family-level behaviour.

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Minding the money: a growing responsibility for informal carers

Managing the assets of older people is a common and potentially complex task of informal care with legal, financial, cultural, political and family dimensions. Older people are increasingly recognised as having significant assets, but the family, the state, service providers and the market have competing interests in their use. Increased policy interest in self-provision and user-charges for services underline the importance of asset management in protecting the current and future health, care and accommodation choices of older people. Although ‘minding the money’ has generally been included as an informal care-giving task, there is limited recognition of either its growing importance and complexity or of care-givers' involvement. The focus of both policy and practice have been primarily on substitute decision-making and abuse. This paper reports an Australian national survey and semi-structured interviews that have explored the prevalence of non-professional involvement in asset management. The findings reveal the nature and extent of involvement, the tasks that informal carers take on, the management processes that they use, and that ‘minding the money’ is a common informal care task and mostly undertaken in the private sphere using some risky practices. Assisting informal care-givers with asset management and protecting older people from financial risks and abuse require various strategic policy and practice responses that extend beyond substitute decision-making legislation. Policies and programmes are required: to increase the awareness of the tasks, tensions and practices surrounding asset management; to improve the financial literacy of older people, their informal care-givers and service providers; to ensure access to information, advice and support services; and to develop better accountability practices.

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Research to support the Duty to Review the Implementation of the Mental Health (Wales) Measure 2010... part 2 final report: coordination of and care and treatment planning for secondary mental health users

This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 2 of the Mental Health (Wales) Measure 2010. This part of the Measure requires health boards and local authorities to work in a coordinated way to improve the effectiveness of mental health services. It also requires that care and treatment plans (CTPs) be provided for service users of all ages who have been assessed as requiring care and treatment within secondary mental health services. The report draws upon the focus groups and interviews conducted with service users, their carers and with mental health practitioners. The findings under each of the specific review questions are presented in turn, covering: whether CTPs address the eight areas of life (finance and money, accommodation, personal care and physical well-being, education and training, work and occupation, parenting or caring relationships, social, cultural or spiritual, medical and other forms of treatment including psychological interventions.

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Models of Earning and Caring: Determinants of the Division of Work

This paper examines possible determinants of models of the division of earning and caring activities in Canadian couples. Using the General Social Survey on Time Use, we identify five models of the division of work: complementary-traditional, complementary-gender-reversed, women's double burden, men's double burden, and shared roles. While the complementary-traditional model is declining, it still represents a third of couples. Women's double burden is the second largest category, representing 27 percent of couples in 2005, with men's double burden representing another 11 percent. The shared roles account for about a quarter of couples. Building on these typologies of earning and caring, we analyze the relative importance of life course, as well as structural and cultural factors as determinants of the division of paid and unpaid work within couples. We find that the complementary-traditional and women's double burdens are more likely for older persons, and for persons with young children. Alternative models are more common when women have higher relative resources, for younger persons, and for persons living in Quebec and in urban areas.

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Cultural differences limit carers

Suggests that language barriers may prevent Bangladeshi informal carers from accessing statutory services in South Wales. Suggestion that informal carers in Bangladeshi communities see their role as an "honor and a privilege," but have limited access to statutory services, often because of language problems; Health and social needs of people caring for dependent adults within a Bangladeshi community.

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Paid employment and unpaid caring work in Spain

The objective of this paper is to investigate the determinants of unpaid time in caring activities, with a special emphasis on the gender dimension. Data from the Household Panel Survey for Spain is used to estimate an ordered probit model for the hours interval in care of children and adult people in need of care. The results show that gender is one of the key determinants of the distribution of time in caring. Being in paid employment is also an important factor in the time devoted to caring. Demographic variables like age, marital status and education are also relevant, particularly in the case of women. Finally, cultural habits and customs are also important.

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Giving voice to older people: dignity in care Welsh language toolkit

The aim of the Welsh language toolkit is to raise awareness and understanding of the implications of the Welsh language in establishing dignity in care for older people living in Wales. It is aimed primarily at carers, managers, educators and trainers and focuses on the importance of language in maintaining dignity in care, particularly in the care of the older person and those with dementia.

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Carers of older adults' satisfaction with public mental health service clinicians: a qualitative study

Aims and objectives: The purpose of our paper was to explore primary caregivers' experience of the way public mental health nurses and other mental health clinicians responded to them as primary carers of older adults with mental illness.

Background: As populations age, the prevalence of mental illness in older adults will increase and the burden of care placed on family carers will intensify. While family carers are essential to the well-being and quality of life of older adults with mental illness, they frequently experience marginalisation from clinicians.

Design: An interpretative phenomenological analysis approach was used to inform data collection and analysis.

Method: Individual, semistructured, audio-recorded qualitative interviews were conducted with a purposive sample of 30 primary carers.

Results: Two themes were abstracted from the data highlighting carers' contrasting satisfaction with, and delivery of culturally competent care by, clinicians. A third theme, strategies for enhancing carers' experience of care, incorporated carers' suggestions about ways to strengthen their experience of caring.

Conclusion: Although some primary carers had favourable experiences with clinicians, most were dissatisfied and this, in turn, clouded their overall experience of caring.

Relevance to clinical practice: Our findings have implications for the provision of education, ongoing support for, and building the cultural competence of, clinicians about working with carers. They also highlight the need for a change in organisational and practice culture to encompass mutual respect and partnership with carers within the context of the providing person-centred care for carers and older adults with mental illness.

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'We didn't know it would get that bad': South Asian experiences of dementia and the service response

The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.

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Stress factors and mental health of carers with relatives suffering from schizophrenia in Hong Kong: implications for culturally sensitive practices

Based on Spaniol and Jung's stress and coping framework (1993), this study examined the difficulties and stresses experienced by carers with relatives suffering from schizophrenia in Hong Kong. The impact of these difficulties and stresses and of mastery as a coping resource on carers' mental health was also explored. Results show that carers experience most difficulties and stresses related to the management of negative symptoms such as refusal to perform household duties and neglect of personal hygiene, and less to handling positive symptoms such as bizarre behaviours and thoughts. It is also revealed that perceptions of stress associated with difficulties in the care of relatives with schizophrenia accounts for poorer mental health among carers. Lastly, carers with a strong sense of mastery have better mental health. Cultural issues such as 'family shame and face saving', 'family obligations and reciprocal expectations', 'external orientation to personal control' and the 'the Confucian work ethics' are put forward as explanations for these findings. Suggestions on culturally sensitive practices are made.

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Carers' representations of affective mental disorders in British Chinese communities

Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.

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Getting it right: assessments for black and minority ethnic carers and service users

The aim of this multimedia learning resource is to provide a broad introduction to the issues affecting minority ethnic carers and service users with an emphasis on achieving cultural competence within individual practice.

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Clarifying and measuring filial concepts across five cultural groups

Literature on responsibility of adult children for aging parents reflects lack of conceptual clarity. The authors examined filial concepts across five cultural groups: African-, Asian-, Euro-, Latino-, and Native Americans. Data were randomly divided for scale development (n = 285) and cross-validation (n = 284). Exploratory factor analysis on 59 items identified three filial concepts: Responsibility, Respect, and Care. Confirmatory factor analysis on a 12-item final scale showed data fit the three-factor model better than a single factor solution despite substantial correlations between the factors (.82, 082 for Care with Responsibility and Respect, and .74 for Responsibility with Respect). The scale can be used in cross-cultural research to test hypothesis that predict associations among filial values, filial care-giving and caregiver health outcomes. [Journal abstract]

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Caregiver-coping in bipolar disorder and schizophrenia: a re-examination

Background: The caregiving experience has been extensively investigated in some chronic/severe mental illnesses such as schizophrenia. These studies have suggested that illness variables and situational/personal characteristics of caregivers have a significant influence on how caregivers cope with mental illness. However, other similar conditions, e. g. bipolar affective disorder (BPAD), have been relatively neglected in this regard. This study attempted to compare caregiver-coping in BPAD and schizophrenia and to explore the determinants of such coping.

Method: Illness variables and coping, burden, appraisal, perceived support, and neuroticism among caregivers were examined in 50 patients each of BPAD and schizophrenia and their caregivers.

Results: High levels of patient-dysfunction and caregiver-burden, low awareness of illness and low perceived control over patient’s behaviour were characteristic of both BPAD and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often. Caregiver’s gender, patient-dysfunction and caregiver-neuroticism had a significant influence on coping patterns, but explained only a small proportion of the variance in use of different coping strategies.

Conclusions: Coping and other elements of the caregiving experience in BPAD are no different from schizophrenia. The relationship between caregiver-coping and its determinants appears to be a complex one. More methodologically sound and culturally relevant investigations are required to understand this intricate area, with the hope that a better understanding will help the cause of both patients and their caregivers.

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Psychological distress and subjective burden of caregivers of people with mental illness: the role of affiliate stigma and face concern

This study examined the internalization of stigma among carers of people with severe mental health problems experiencing stigma. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers’ experience and alleviate their stigma.

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Access all areas

The Access Initiative is run by the Minority Ethnic Carers of Older People Project in partnership with Edinburgh Council, West Lothian Council, minority ethnic carers, and older people. Its twin aims are to give carers from Edinburgh's south Asian and Chinese communities a break from caring and to provide culturally competent services for older members of the family who need care. [Introduction]

Dementia's cultural challenge

Discusses the finding of research which looks at how carers from ethnic minorities view statutory services for family members with dementia. The research, funded by the School of Health and Social Welfare at the Open University, focused on people from south Asian or African-Caribbean backgrounds.

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Caregiving in the Pacific Rim: a comparison of Asian and non-Asian caregiving experiences

This study compares the results of two surveys of informal caregivers conducted in California and Hawaii (N = 1677) to determine if there is a uniquely Asian model of caregiving. Differences between Asian and non-Asian caregivers were found in the percentage of male caregivers, the impact of caregiving personally and on the family, and on employment. Furthermore, in multivariate analysis, being of Asian origin retained significance in predicting both positive and negative caregiver outcomes. This study suggests that Asian-american caregivers, while still respecting their cultural caregiving tradition, may be experiencing difficulties in adapting to new roles.

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Family care for immigrants with dementia: the perspectives of female family carers living in the Netherlands

BACKGROUND: The prevalence of dementia is increasing among non-western immigrants. It is known that family care is provided relatively often among immigrant groups. Until now, however, relatively little was known about how relatives of people with dementia in the immigrant communities perceive family care. This study therefore focuses on describing the perspectives of female Turkish, Moroccan and Surinamese Creole family carers in the Netherlands about providing family care to a close relative with dementia.

METHODS: Forty-one individual interviews and six focus group interviews (n=28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia. A qualitative analysis of the interviews has been carried out, supported by the software MaxQda.

RESULTS: Related to their cultural and religious backgrounds, female family carers with Turkish, Moroccan or Surinamese Creole origins see family care as a task that they should carry out with respect and love. They feel that family care is superior to professional care and that it is principally a task for women. If men do have a role in family care, then it generally covers non-physical aspects. Despite the fact that the family carers interviewed listed aspects that make caring for a close relative with dementia difficult, they do say that they get a great deal of satisfaction from providing this care. In Turkish and Moroccan families in particular this type of care leads to more recognition and appreciation of the daughter or daughter-in-law who is giving it.

CONCLUSION: Family carers of Turkish, Moroccan or Surinamese Creole origin derive a great deal of satisfaction from giving family care to a relative with dementia. This fulfilment largely outweighs the burden of care. Professional support or information for these family carers can be improved by also focusing on the positive aspects of providing family care instead of an exclusive focus on reducing the burden.

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Disparate routes through support: Negotiating the sites, stages and support of informal dementia care

Worldwide people with dementia are usually cared for at home by informal carers who may themselves have poor health and/or live in social situations which intensify their needs. The scale of these needs continues to be underappreciated and they are exacerbated by the limited social, cultural and emotional resources that carers can draw upon. This paper looks at the disparities in support, and the complex negotiations made by carers, as they reconcile the everyday realities of informal care in the home. Appreciation of these issues is essential in understanding carers' coping strategies in an ageing population.

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Finding a voice: the experiences of Chinese family members participating in family support groups

Family support groups (FSG) are an important source of intervention for caregivers of an older, frailer, or ill family member. Whether and how FSG works within ethnic minority groups is not well understood, however. Drawing on data from a sub-set of a larger qualitative study focused on exploring the impact of participating in a family support group, this study examined how culture influenced the FSG experience of Chinese family caregivers. In-depth, personal interviews were conducted with six Chinese family caregivers about their experiences participating in a family support group. Analysis suggested that while many of the participants' experiences with the family support groups were not inconsistent with those reported by mainstream participants, the overarching theme that dominated their stories was different and was strongly linked to culture by all of the participants. Specifically, participants framed their experience in the support groups as pivotal for helping them become more assertive in relation to the care needs of their relative and themselves. Through the process of attending the groups, participants began to: (1) challenge the cultural values and beliefs about “speaking out” as negative, (2) reframe and recognize the value of “speaking out” as an important aspect of care provision, and (3) re-envision a new framework for providing care. This enabled family members to reposition themselves in their care-partnering role and find a voice within the broader health care system.

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Informal in-hospital care in a rehabilitation setting in Greece: An estimation of the nursing staff required for substituting this care

Purpose. To explore: (a) the type and frequency of care-giving activities provided by family members in the Rehabilitation Setting (RS), (b) opportunities for family members to receive training in care-giving activities, (c) to what extent caregivers feel free to ask the nursing staff for help and (d) to estimate the number of nursing staff required to substitute this care and thus to estimate the money saved by the RS due to the in-hospital informal care.

Method. A convenience sample of 80 family members was selected. A questionnaire was developed to investigate several aspects of informal in-hospital care. Data was analysed using SPSS for Windows (Release 10.1).

Results. Cultural reasons and nursing staff shortage led 78.8% (n = 63) of the sample to provide informal in-hospital care. Oral and facial care (67.5%), help with getting dressed (62.5%), help with feeding (61.25%, n = 49), making patients' beds (57.5%, n = 46) and assistance with transferring patients from one hospital department to another (56.25%, n=45) was provided on a daily basis by the subjects. 48.75%, (n=39) changed sheets 1-2 times per week, while assistance with transfers from bed to wheel-chair and vice-versa (43.75%, n = 35) was provided 3-4 times per week. The estimated total time spent per week by the subjects on care-giving activities was 34,034 minutes that corresponds to a total of 75.6 working days or 15.12 working weeks. In order to substitute this care, the RS would need to hire 17 more assistant nurses, entailing a cost of from e14,450 to e20,060 per month.

Conclusions. Informal in-hospital care is provided by Greek families in the RS. Nursing care staff shortage combined with cultural factors are the main reasons for this phenomenon. However, it saves the RS and the Greek State money and policy makers should be looking for ways to overcome the nursing shortage.

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Family carers' responses to behavioural and psychological symptoms of dementia

Objectives: To describe the responses of family carers to the behavioural and psychological symptoms associated with dementia.

Methods: Thirty family carers of people with dementia were identified in a survey of mental disorder in general practice. Another 20 were referred by local aged mental health services. Carers were interviewed using the Manchester and Oxford University Scale for the Psychopathological Assessment of Dementia (MOUSEPAD) which rates behavioural and psychological disturbances. Carers' customary responses to current symptoms were recorded verbatim and categorised using a structured typology.

Results: Symptom frequency increased in line with dementia severity. Disturbances were generally well tolerated. Most were ignored where possible, except for wandering from home. Other common responses included avoiding triggers, providing reassurance, reality orientation, diversion, and collusion with false beliefs. Restrictive or punitive responses were uncommon.

Conclusions: Few carers articulated clear strategies to deal with behavioural and psychological symptoms. For most, tolerance proved more effective and less distressing than arguments and reprimands. Carers' responses are likely to be influenced by social and cultural factors and may differ in other settings. Copyright © 2003 John Wiley & Sons, Ltd.

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Care arrangements for people with dementia in developing countries

Background: Rapid demographic ageing will soon lead to large increases in the numbers of persons with dementia in developing countries. This study is the first comprehensive assessment of care arrangements for people with dementia in those regions.

Methods: A descriptive and comparative study of dementia care; caregiver characteristics, the nature of care provided, and the practical, psychological (Zarit Burden Interview, General Health Questionnaire) and economic impact upon the caregiver in 24 centres in India, China and South East Asia, Latin America and the Caribbean and Africa.

Results: We interviewed 706 persons with dementia, and their caregivers. Most caregivers were women, living with the person with dementia in extended family households. One-quarter to one-half of households included a child. Larger households were associated with lower caregiver strain, where the caregiver was co-resident. However, despite the traditional apparatus of family care, levels of caregiver strain were at least as high as in the developed world. Many had cutback on work to care and faced the additional expense of paid carers and health services. Families from the poorest countries were particularly likely to have used expensive private medical services, and to be spending more than 10% of the per capita GNP on health care.

Conclusions: Older people in developing countries are indivisible from their younger family members. The high levels of family strain identified in this study feed into the cycle of disadvantage and should thus be a concern for policymakers in the developing world.

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Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK

This article draws on findings from a three-year project to develop and deliver culturally appropriate support group materials for South Asian and Eastern European family carers of relatives with dementia living in the UK. Analysis of interview and field note data revealed insights into how understandings of dementia in different cultural contexts can become operationalised through stigma processes and in turn influence the ways in which people with dementia and their family carers engage with formal and informal support. 

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Older Irish people with dementia in England

The Irish community is the oldest minority ethnic community in Britain. Despite an older age profile than general or minority ethnic populations, as well as excesses of mental and physical ill-health and socio-economic disadvantage, the age, poor health and social profile of the community is largely ignored by policy makers and providers. Several of these factors predispose the Irish community in England to a higher incidence of dementia. Unlike other minority ethnic groups with growing numbers of people with dementia, the incidence of dementia is already high. Older Irish people are often reluctant to access mainstream services because they fail to recognise their distinct cultural needs and experiences. Irish third sector organisations provide a range of culturally specific services to older people and their carers and increasingly to those with dementia. This article uses data from a mapping exercise which identifies non-governmental services for Irish people with dementia and their carers, explaining what cultural sensitivity means for them. Changes in the UK government and the ‘Big Society’ agenda pose a threat to dementia services. However prioritising the National Dementia Strategy and revising the National Carers Strategy within this agenda could expand the role of the Irish third sector in England and improve the lives of Irish people with dementia and their carers.

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Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers’ access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.

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Help from spouse and from children among older people with functional limitations : comparison of England and Finland

Future increases in need of old-age care warrant research on receipt of informal care among older people in different policy and cultural contexts. Separating informal care into help provided by spouse and by children may shed more light on dynamics of informal help, important in alleviating the demands on the formal sector. Using nationally representative data from England and Finland, we performed logistic regression analyses to study receipt of help from spouse and children among community-dwelling persons aged 70+ years with functional limitations. In both countries, women and those with more functional limitations had higher odds of receiving spousal and filial help. In England – but not in Finland – those receiving formal public help had lower odds of receiving spousal help than those with no formal help. Those with low education received more filial help in England, but no association was found between formal and filial help. In Finland, the effect of education was not significant but those receiving formal help had higher odds of also receiving filial help. The results suggest that in a liberal market-led state, the role of children may be to help their parents living alone and with low financial resources. In the context of a generous welfare state, children may function more as active agents bridging the gap between their parents and formal services.

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Forensic Nursing Interventions With Patients With Personality Disorder: A Holistic Approach

Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients’ cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.

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Barriers to access and minority ethnic carers' satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature

As populations age, the numbers of carers overall and numbers of carers from minority ethnic groups in particular are rising. Evidence suggests that carers from all sections of the community and particularly carers from minority groups often fail to access care services. This may relate to barriers in accessing services and service dissatisfaction. The aim of this systematic review was to identify and summarise minority ethnic carers' perceptions of barriers to accessing community social care services and their satisfaction with these services if accessed. The following databases were searched from their start until July 2013: Social Care Online, Social Policy and Research, Scopus, PsychINFO, HMIC, ASSIA, MEDLINE, Embase, CINAHL Plus and AMED. Thirteen studies met the inclusion criteria. Most investigated either barriers to access or satisfaction levels, although three explored both. Only 4 studies investigated minority ethnic carers' satisfaction with social care, although 12 studies reported perceived barriers to accessing services. Few studies compared minority ethnic carers' perceptions with majority ethnic groups, making it difficult to identify issues specific to minority groups. Most barriers described were potentially relevant to all carers, irrespective of ethnic group. They included attitudinal barriers such as not wanting to involve outsiders or not seeing the need for services and practical barriers such as low awareness of services and service availability. Issues specific to minority ethnic groups included language barriers and concerns about services' cultural or religious appropriateness. Studies investigating satisfaction with services reported a mixture of satisfaction and dissatisfaction. Barriers common to all groups should not be underestimated and a better understanding of the relationship between perceived barriers to accessing services and dissatisfaction with services is needed before the experiences of all carers can be improved.

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Qualitative focus group study investigating experiences of accessing and engaging with social care services: perspectives of carers from diverse ethnic groups caring for stroke survivors

Objectives Informal carers, often family members, play a vital role in supporting stroke survivors with post-stroke disability. As populations age, numbers of carers overall and those from minority ethnic groups in particular, are rising. Carers from all ethnic groups, but especially those from black and minority ethnic groups frequently fail to access support services, making understanding their experiences important. The study therefore explored the experiences of carers of stroke survivors aged 45+ years from 5 ethnic groups in accessing and receiving social care services after hospital discharge.

Design This qualitative study used 7 recorded focus groups with informal carers of stroke survivors. Data were analysed thematically focusing on similarities and differences between ethnic groups.

Setting Carers were recruited from voluntary sector organisations supporting carers, stroke survivors and black and minority ethnic groups in the UK.

Participants 41 carers from 5 ethnic groups (Asian Indian, Asian Pakistani, black African, black Caribbean, white British) participated in the focus groups.

Results Several interconnected themes were identified including: the service gap between hospital discharge and home; carers as the best person to care and cultural aspects of caring and using services. Many themes were common to all the included ethnic groups but some related to specific groups.

Conclusions Across ethnic groups there were many similarities in the experiences of people caring for stroke survivors with complex, long-term care needs. Accessing services demands effort and persistence on carers’ part. If carers believe services are unsatisfactory or that they, rather than formal services, should be providing support for stroke survivors, they are unlikely to persist in their efforts. Cultural and language differences add to the challenges black and minority ethnic group carers face.

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Public interest and private concern: the role of family carers for people suffering mental illness in the twenty first century

Objectives: This paper looks to examine the emerging role of carers as essential components in the management of individuals affected by severe mental illness in the context of modern legal and health policy environments. Conclusions: Cultural and legal concepts of confidentiality within the doctor–patient relationship are complex. Increasingly, evidence is recognizing the essential role of carers in the quality management of individuals affected by severe mental illness and this emphasis is being further supported by innovative health policy and legislation. A public health definition for the role of carers may be a more appropriate way to consider their role in mental health management strategies.

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Including older people with dementia in research: challenges and strategies

This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods be spoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.

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Place, policy and practitioners: On rehabilitation, independence and the therapeutic landscape in the changing geography of care provision to older people in the UK

A growing body of literature in geography and other social sciences considers the role of place in the provision of healthcare with particular interests emerging around the role of the psychological, social and cultural aspects of place in care provision. As healthcare stretches increasingly beyond the traditional four walls of the hospital, so questions of the role of place in practices of care become ever more pertinent. In this paper, we examine the relationship between place and practice in the care and rehabilitation of older people across a range of settings, using qualitative material obtained from interviews and focus groups with nursing, care and rehabilitation staff working in hospitals, clients’ homes and other sites in England. By analysing their testimony on the characteristics of different settings, the aspects of place which facilitate or inhibit rehabilitation and the ways in which place mediates and is mediated by social interaction, we consider how various dimensions of place relate to the power-inscribed relationships between service users, informal carers and professionals as they negotiate the goals of the rehabilitation process. We seek to demonstrate how the physical, psychological and social meanings of place and the social processes engendered by the rehabilitation encounter interact to produce landscapes that are more or less therapeutic, considering in particular the structuring role of state policy and formal healthcare provision in this dynamic.

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