The experience of having a child hospitalised is stressful and disrupts families in myriad ways; however, the experiences of parents/caregivers who encounter repeated admissions of a child with acute lower respiratory infections are under-researched. This project aims to explore these experiences, from a qualitative perspective, using the philosophical tenets of reflective lifeworld research. The research included 14 face-to-face interviews with parents, grandparents, or primary caregivers, of children who, whilst under two years of age, were admitted to hospital multiple times with a lower respiratory infection diagnosis. Many of the participants were from Māori or Samoan ethnic backgrounds. The findings of this single site study revealed that these parents/caregivers' experiences were characterised by feelings of powerlessness, offering descriptions of hospitals as harsh and difficult places to reside, they are 'in-hospitable'. The findings suggest that repeated hospitalisations created a cycle of stressful experiences that impacted both familial relationships and interactions with society. This study draws attention to this previously obscured population group, and calls health care practitioners and policy advisors to engage differently over issues involving families in similar positions.
Background: The COVID-19 pandemic introduced challenges to families with young children with developmental delays. Beyond the widespread concerns surrounding illness, loss of employment and social isolation, caregivers are responsible for overseeing their children's educational and therapeutic programmes at home often without the much needed support of professionals.
Method: The present study sought to examine the impact of COVID-19 in 77 ethnically, linguistically and socioeconomically diverse families with young children with intellectual and developmental disabilities (IDDs) in California and Oregon, who were participating in larger intervention studies. Parents responded to five interview questions about the impact of the pandemic, services for their child, silver linings or positive aspects, coping and their concerns about the long-term impact of the pandemic.
Results: Parents reported that their biggest challenge was being at home caring for their children with the loss of many essential services. Parents reported some positive aspects of the pandemic, especially being together as a family. Although there were positive aspects of the situation, many parents expressed concern about long-term impacts of the pandemic on their children's development, given the loss of services, education and social engagement opportunities.
Conclusion: Results suggest that parents of young children with IDD report significant challenges at home during the pandemic. Professional support, especially during the reopening phases, will be critical to support family well-being and child developmental outcomes.
Introduction: The Common Sense Model (CSM) posits that Illness Representations (IRs) are a patient's beliefs and expectations about an illness and that IRs guide health behavior (Leventhal, Brissette, & Leventhal, 2003). This study aimed to examine possible links between youth asthma IRs and disease-related outcomes ( controller medication adherence, asthma control, and lung function) in a sample of black and Latino youth with asthma. Caregiver IRs were also included to examine possible relationships between family-level characteristics and asthma outcomes.
Methods: Black and/or Latino adolescent-caregiver dyads (N=104) were recruited in the Bronx, New York. All children had asthma and a recent controller medication prescription. CSM belief domains were used to guide analyses for associations between asthma IRs and outcomes. For example, a Timeline subscale included beliefs about the expected duration of asthma and whether it is chronic or episodic in nature. Discrepancies between caregiver and child beliefs were also examined ( e.g. discrepancy Timeline IRs ). Measures included: Asthma Illness Representation Scale for Children (C-AIRS); No Symptoms, No Asthma Belief Scale (No Sx); Asthma Control Test (C-ACT and ACT); and the Medication Adherence Report Scale for Asthma (MARS-A). Primary analyses examined relationships between child asthma outcomes with: ( 1) child IRs, (2) caregiver IRs, and (3) child-caregiver discrepancy IRs.
Results: Child participants were balanced in gender (52.9% male) and race/ethnicity (55.8% Latino) with a mean age of 13 years. Caregivers were primarily female (92.3%) with a mean age of 41.5 years. ( 1) Child IRs were not significantly associated with child asthma outcomes. This was true for main effects, moderation analyses, and indirect effects (mediation analyses). (2) Child age moderated the relationship between caregiver IRs and child asthma control on: a) average IRs (F(5, 98) = 10.39,p < .001, R2 = .347), and b) a Timeline subscale (F(4, 99) = 14.02, p < .001, R2 = .362). Surprisingly, these relationships were in the opposite direction of hypotheses. For example, for younger children (b = 0.970) asthma control was worse with caregivers who had professional model IRs ( e.g. asthma is chronic), but better with lay model caregiver IRs (e.g. asthma is acute/episodic). (3) Child-caregiver IR discrepancy was significantly associated with medication adherence (F(3, 99) = 6.04, p = .001, R2 = .155). As expected for families with discrepant beliefs, medication adherence was higher with the combination of caregiver professional/child lay IRs (i.e., caregivers endorsed beliefs aligned more with the professional model compared to children who endorsed IRs more aligned with the lay model). Exploratory analyses showed an interaction between discrepancy Timeline IRs and child age on asthma control(F(6, 96) = 7.22, p < .001, R2 = .311). In younger children (b = - 0.270), asthma control was better for caregiver lay/child professional IRs. This relationship appeared to be reversed in older youth (b = 0.307) with better asthma control for caregiver professional/ child lay IRs.
Discussion: The current analyses do not support a simple, direct link between child asthma beliefs with behaviors (adherence) and/or health outcomes. Significant relationships were only observed within the context of the caregiver-child dyad. Child age was an important factor in the relationship between IR discrepancy and asthma control. The relationship between medication adherence and discrepant beliefs between child and caregiver supports inclusion of both caregiver and child. This may better capture developmental and familial influences ( or social context) when measuring child beliefs, disease management, and health outcomes.
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.
This mixed method study examined factors associated with parents not attending their child's mental health treatment after initially seeking help for their 2-5 year old child. It was part of a larger study comparing two evidence-based treatments among low-income racial/ethnic minority families seeking child mental health services. Of 123 parents who initiated mental health treatment (71% African American or multi-racial; 97.6% low-income), 36 (29.3%) never attended their child's first treatment session. Socio-demographic characteristics, parenting stress, depression, severity of child behavior problems, and length of treatment delay from intake to first scheduled treatment session were compared for families who did and did not attend their first treatment session. Parents who never attended their child's first treatment session were more likely to live with more than 4 adults and children (p=.007) and have more depressive symptoms (p=.003). Median length of treatment delay was 80 days (IQR =55) for those who attended and 85 days (IQR =67.5) for those who did not attend their child's first treatment session (p=.142). Three themes emerged from caregiver interviews: (a) expectations about the treatment, (b) delays in getting help, and (c) ambivalence about research participation. Findings suggest the need to develop better strategies for addressing risk factors early in the treatment process and reducing the length of time families with adverse psychosocial circumstances must wait for child mental health treatment.
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.
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.
African American children with asthma demonstrate significant health disparities and poor health outcomes. Understanding the burdens faced by parents and caregivers of children with asthma may be helpful to develop future interventions to address this disparity. The purpose of this integrative review was to reveal the barriers and facilitators of child asthma management experienced by African American caregivers. Whittemore and Knafl's (2005) method of integrative review was used to review 40 articles. The integrative review involved appraising the quality of the literature, conducting a thematic analysis, and evaluating the barriers and facilitators of pediatric asthma management experienced by African American caregivers. Barriers and facilitators were identified as themes. Barriers included caregiver burdens, and lack of home and neighborhood safety. Facilitators were family and community support, education and empowerment, and culturally competent healthcare providers. To improve the care of African American children with asthma, nurses should work to engage, communicate, and foster trust with families. Nurses should assess and address the family caregivers' burdens while emphasizing support systems.
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.
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.
We aimed to examine family quality of life (FQOL) of Northern Israeli families having a child with a severe neurodevelopmental disability and its relation to socio-demographics. The cohort included caregivers of 70 children ages (mean ± standard deviation) 5.36 ± 3.53 years. Families were two-parent (85.7%), lived in the periphery (67.1%) and included Jews (60%), Muslims (18.6%), Druze (14.3%) and Christians (7.1%). Religiosity included: secular (38.6%), traditional (31.4%), religious (30%). Children's diagnosis included autistic spectrum disorder (41.4%), intellectual disability (21.4%), cerebral palsy (17.1%), genetic syndromes (17.1%) and sensorineural hearing loss (2.9%). Degree of support (1-minimal,5-greatest) required by the child was 3.67 ± 1.28 for physical and 3.49 ± 1.36 for communication. Primary caregivers completed the FQOL Survey. Domain scores were highest for family relations and lowest for financial well-being. Dimension scores were highest for importance and lowest for opportunities. Overall FQOL approximated average. Jewish families and residents of a major urban area reported higher and more religious families reported lower overall FQOL. Regression analysis found ethnicity contributing to overall FQOL and domain scores with residence contributing to support from services. Ethnicity and child dependence contributed to dimension scores. Northern Israeli families having a child with a severe neurodevelopmental disability report average FQOL scores. However, family and child dependence characteristics affect FQOL scores. Professionals working with these families should consider FQOL information when making recommendations.
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.
Rates of engagement in mental health care are disproportionately low for low-income, racial/ethnic minority youth. We will present novel research on caregiver-reported challenges to engagement in care, and the results of research on strategies supporting caregivers to overcome barriers to engagement.
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.
Latino children face barriers to high-quality healthcare. Because children with medical complexity (CMC) have higher healthcare needs, Latino CMC are likely to experience greater effects of these barriers. These vulnerabilities are exacerbated when Latino CMC endure adverse social conditions, such as food insecurity and housing instability. The study objective was to describe the challenges faced by caregivers of Latino CMC in meeting the practical needs of their children when caring for them at home. In this qualitative study, 70 Latino CMC enrolled in a complex care program of a tertiary care children's hospital were followed for a median duration of 45 months. We collected care coordination notes from encounter logs and interviewed bilingual care coordinators regarding their experiences with each child. Using thematic content analysis and an iterative process, we identified recurrent themes related to practical needs. Four themes emerged. Caregivers: 1) faced financial challenges due to many reasons that were exacerbated by children's medical conditions; 2) had challenges meeting basic needs of their families, including food and shelter; 3) experienced difficulties obtaining necessary medical supplies for their children; and 4) relied on care coordinators to navigate the system. We conclude that Latino caregivers of CMC experience many challenges meeting their families' basic needs and obtaining necessary medical supplies to care for their CMC at home. Care coordinators play a major role in addressing the practical needs of Latino CMC. Future studies should determine whether addressing the practical needs of Latino CMC would improve their health outcomes.
Asthma remains the most prevalent chronic illness among children. Despite the substantial body of literature examining children with asthma, few studies have examined parents' perspectives of the condition and experiences of caregiver stress. Parents of children with chronic illnesses experience elevated stress and may have limited opportunities to cope with complex emotions while caring for children with asthma. Drawing from focus groups and interviews with African American and Hispanic parents of children with asthma, this qualitative study was conducted as part of a patient-centered engagement process to inform the refinement of an intervention aimed at reducing stress among parents of children with asthma. All data were transcribed and underwent three waves of inductive analysis. The content analysis indicated that the unpredictable nature of asthma and the caregiving burden associated with managing children's asthma contributed to parents' stress, and external contexts compounded the impact of these stressors. Parents also reported having difficulty identifying how they coped with stress and employed approaches to coping with stress that they applied intermittently but encountered several barriers to enacting known or available coping strategies. Analyses also revealed that parents desired a multimodal stress reduction intervention that emphasized building relationships, allowed for flexibility, and encouraged staff-parent communication. Whereas African American and Hispanic parents' experiences of stress and coping strategies were similar, their preferences differed in regards to incorporating technology into the intervention, the credentials of facilitators, and the salience of language preferences. Understanding the complexities of stressors facing caregivers is important for developing interventions to support parents and children coping with asthma, and in particular when working with families from diverse backgrounds.
The purpose of the present study was to understand how caregiver stress and coping behaviors impact African American and Euro-American families differently when caring for a child with autism. This study used discriminate function analysis to contrast the stress and coping profiles of Euro-American caregivers who are more acculturated with the majority culture with African American caregivers who ascribe to more traditional values. A sample of 103 families was recruited (52 Euro-American, 51 African American). African American families reported significantly more stress and utilizing more varied coping strategies than their Euro-American counterparts. Additional differences were found between the high and low acculturated African American groups such that low acculturated African Americans were more likely to engage in religious coping.
Objective: To compare the communication experiences and preferences of racial/ethnic minority and non-Hispanic white (NHW) families in the pediatric intensive care unit (PICU), including their interactions with bedside nurses.
Methods: Retrospective cohort study performed at a quaternary university-affiliated children's hospital with 70 pediatric intensive care beds. From October 2013 to December 2014, English-speaking family members of children admitted to the PICU were asked about their experiences communicating with PICU caregivers using a survey tool.
Results: 107 participants were included for analysis, of which 60 self-identified as a racial minority and 47 as NHW. Overall, 11% of families chose family meetings as their preferred setting for receiving information, as compared to family-centered rounds or unplanned bedside meetings. Only 50% of those with a family meeting felt they learned new information during the meeting. Chi-square statistics or Fisher's exact tests showed that minority families were less likely to report their bedside nurses spent enough time speaking with them (minority 67%, NHW 85%; p = 0.03) and less likely to receive communication from the medical team in their preferred setting (minority 63%, NHW 85%; p = 0.01). Logistic regression, controlling for covariates including education, insurance, and risk of mortality, showed that the relationship between minority status and concordance of preferred setting persisted (OR = 0.32, 95% C·I.: 0.11, 0.91).
Conclusion: In general, families of PICU patients prefer meeting with the medical team during rounds or unplanned bedside meetings as opposed to formal family meetings. Despite this preference, minority families are less likely to receive communication from the medical team in their preferred settings. Meeting all families' communication setting needs may improve their communication experiences in the PICU. (Copyright © 2019 National Medical Association. Published by Elsevier Inc. All rights reserved.)
Background: Unpaid caregivers of adults play critical roles in health care systems by providing care to older adults and those with chronic conditions. The COVID-19 pandemic has heightened caregiving needs, forcing some into caregiving roles and disrupting others. Objectives: We sought to estimate the prevalence of and identify factors associated with adverse mental health symptoms, substance use, and suicidal ideation amongst unpaid caregivers of adults versus non-caregivers. Methods: During June 24-30, 2020, surveys were administered to U.S. adults. Quota sampling and survey weighting were implemented to improve sample representativeness of age, gender, and race/ethnicity. Results: Of 9,896 eligible invited adults, 5,412 (54.7%) completed surveys and 5,011 (92.6%) met screening criteria and were analyzed, including 1,362 (27.2%) caregivers. Caregivers had higher adverse mental health symptom prevalences than non-caregivers, including suicidal ideation (33.4% vs 3.7%, p < 0.0001). Symptoms were more common among caregivers who were young vs older adults (e.g., aged 18–24 vs ≥65 years, aPR 2.75, 95% CI 1.95–3.88, p < 0.0001) and with moderate and high vs low Caregiver Intensity Index scores (2.31, 1.65–3.23; 2.81, 2.00–3.94; both p < 0.0001). Limitations: Self-report data may be subject to recall, response, and social desirability biases; unpaid caregivers were self-identified; child caregiving roles were not assessed; and internet-based survey samples might not fully represent the U.S. population. Conclusions: Caregivers experienced disproportionately high levels of adverse mental health symptoms. Younger caregivers and those with higher caregiving intensity were disproportionately affected. Increased visibility of and access to mental health care resources are urgently needed to address mental health challenges of caregiving.
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.
Objectives: Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore. Methods: We conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis. 26 stroke survivors and 35 family caregivers purposively sampled from multiple settings. Results: Findings were summarized into seeking care and experience of healthcare encounters. Seeking care comprised of the following themes: factors influencing seeking care, decision to seek care and role of caregiver in seeking care. Experience of healthcare encounters comprised of the following themes: service around the patient, service with care and role of caregiver in healthcare encounters. Conclusion: Multi-dimensional role of caregivers in healthcare experience emerged as a major finding. Unique to our Asian context, as per the participants’ accounts, family caregivers seemed to be central in healthcare decision-making for stroke survivors, with adult-child caregivers commonly reported being engaged in collaborative decision-making. While spousal caregivers preferred a relational healthcare experience, adult-child caregivers preferred a transactional one. Practical implications include equipping caregivers with skillset to make healthcare decisions, provision of supportive decision-making environment for caregivers and reinforcing communication aspects in the medical, nursing and allied healthcare curriculum to improve healthcare experience.
Impact and Implications: The current study highlights the importance of screening for suicidal ideation for both individuals with traumatic brain injury (TBI) and their caregivers, as findings suggest that thoughts of death and/or suicide are relatively common among both patients and caregivers up to a year post-injury. Moreover, patient suicidal ideation at hospitalization is predictive of reported caregiver suicidal ideation at later time points. Clinicians and rehabilitation specialists may wish to expanding practices of assessing suicide risk in patients to include caregivers, particularly caregivers of patients who endorsed suicidal ideation. Given that these findings demonstrate significant interdependence of suicidality between patients and caregivers, interventions for patients with TBI should include their respective caregivers or even incorporate family systems theories and approaches. Purpose/Objective: Traumatic brain injury (TBI) is associated with depression, anxiety, and even suicidality in individuals with TBI and in caregivers. Moreover, emotional functioning in individuals with TBI is linked with caregiver functioning. However, no known studies to date have examined linkages in suicidal ideation in individuals with TBI and family caregivers. This is especially important in Latin America, where TBI rates are high, and where cultural norms influence family caregiving. This study examined associations among self-reported suicidal ideation in individuals with TBI and their primary caregivers over time in Mexico and Colombia. Research Method/Design: A total of 109 individuals and their primary caregivers completed measures during hospitalization for TBI and at 2- and 4-months posthospitalization. The primary outcome was Item 9 from the Spanish version of the Patient Health Questionnaire-9, assessing for thoughts of death or suicide in the previous 2 weeks. Results: Patients and caregivers reported high levels of suicidal ideation (18.3%-22.4% and 12.4%-15.7%, respectively) at each time point, and suicidal ideation at one time point strongly predicted ideation at the next. When patients endorsed suicidal ideation in the hospital, their caregivers tended to endorse suicidal ideation 2 months later. Although unaccounted for variables could be driving these relationships, they may also provide possible evidence of causal preponderance between patient and caregiver suicidal ideation post-TBI. Conclusions/Implications: Clinicians and rehabilitation specialists can use these findings to inform suicide risk assessment by expanding these practices to caregivers of patients who endorsed suicidal ideation. Interventions after TBI should incorporate caregivers given this study showed significant interdependence of suicidality between patients and caregivers.
Background & Objective: It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. Our intent was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models. We studied Hispanic caregivers of patients (age 2–17 years) with T1D of greater than 6 months' duration. Research Design and Methods: We completed semi-structured interviews and focus-groups of a purposive sample of 20 members of our population of interest. We developed a codebook and completed multidisciplinary consensus coding, then conducted iterative thematic analysis using qualitative software and discussion to generate themes. Results: We gathered data from 20 Hispanic caregivers of T1D patients (11.37 ± 3.00 years old, 4.80 ± 2.84 years since diagnosis). 85% of caregivers were female, 80% preferred Spanish, and 15% were college-educated. Our analysis yielded 4 themes across the participants: (1) Culturally-based nutrition challenges, (2) Social isolation and lack of support for T1D care, (3) Hesitancy to fully embrace diabetes technology, and (4) Deferential views of care experience and providers. Overarching all of these themes was support for Hispanic group-based models of care tailored to address these concerns. Conclusions: The unique concerns among Hispanic caregivers of children with T1D suggest the importance of culturally tailored interventions to improve care. With successful implementation, such interventions could diminish widening disparities in healthcare outcomes.
Background: In Asian societies, the responsibility of caring for persons with dementia often falls upon an immediate family member. However, little attention has been paid to the early stages of caregiving, as well as their transition into a more experienced caregiver. Methods: Thus, a qualitative descriptive study involving a purposive sample of 11 main family caregivers of a person with newly diagnosed dementia was recruited from a tertiary hospital in Singapore. Findings: Three themes emerged from the data analysis: (1) Suspicions to seeking confirmation of dementia, (2) Grappling with dementia diagnosis, and (3) Making adjustments for the future. Areas of needs and support identified during the early caregiving journey suggest the need for caregivers to be prepared for the practical and emotional challenges. Conclusions: Unique to the Asian culture, our findings put forth the advocacy of engaging persons with dementia in the discussions of their long-term care and options.
Background: Caregiving is a global phenomenon which is bound to increase in tandem with the aging population worldwide. Stroke is a condition common in older people that requires complex caregiving necessitating provision of adequate support to the caregivers. Past literature consists of limited accounts of types and organization of support arrangements needed by different caregivers. Objectives: We aimed to describe the support system of caregivers of stroke survivors in Singapore, highlighting differences across the different caregiver identities (i.e. spouse, adult-child, etc.). Methods: We conducted a qualitative descriptive study in the community setting involving 61 purposively sampled and recruited stroke survivors and caregivers. Semi-structured interviews were conducted, and transcripts were analysed using thematic analysis. Results: Our findings were summarized across the following 4 themes: 1) cultural influence and caregiving; 2) caregiver support system with the following sub-themes: 2.1) dyadic caregiver support type, 2.2) extended caregiver support type, 2.3.) distributed caregiver support type and 2.4) empowering caregiver support type; 3) breaks in care of stroke survivor and 4) complex relationship dynamics. We operationalized the caregiver support system as comprising of type, people and activities that enable the caregiver to participate in caregiving activities sustainably. While spouse caregivers preferred dyadic and extended support systems positioning themselves in a more central caregiving role, adult-child caregivers preferred distributed support system involving family members with paid caregivers playing a more central role. Conclusions: Our findings highlight caregiver identity as a surrogate for the differences in the caregiver support systems. Practical implications include imparting relationship-building skills to the stroke survivor-caregiver dyads to sustain dyadic support system and educating clinicians to include differences in caregiving arrangements of stroke survivors in practising family-centred care.
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).
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.
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.
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.
Background and Objectives: The "unexpected career"of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Research Design and Methods: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. Results: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. Discussion and Implications: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.
Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%). Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted. Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: "Hoping to help others,""Speaking about what is hard is important,"and "Being in the study was sometimes hard but not bad. Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.
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.
Purpose: Illness uncertainty pervades individuals' experiences of cancer across the illness trajectory and is associated with poor psychological adjustment. This review systematically examined the characteristics and outcomes of interventions promoting illness uncertainty management among cancer patients and/or their family caregivers. Methods: PubMed, Scopus, PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, and Cochrane Database of Systematic Reviews were systematically searched for relevant literature. We included randomized controlled trials (RCTs) and quasi-experimental studies focusing on interventions for uncertainty management in cancer patients and/or their family caregivers. Results: Our database searches yielded 26 studies. Twenty interventions were only offered to cancer patients, who were mostly elder, female, and White. All interventions included informational support. Other intervention components included emotional support, appraisal support, and instrumental support. Most interventions were delivered in person and via telephone (n = 8) or exclusively in person (n = 7). Overall, 18 studies identified positive intervention effects on illness uncertainty outcomes. Conclusion: This systematic review foregrounds the promising potential of several interventions—and especially multi-component interventions—to promote uncertainty management among cancer patients and their family caregivers. To further improve these interventions' effectiveness and expand their potential impact, future uncertainty management interventions should be tested among more diverse populations using rigorous methodologies.
Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective. Methods: One hundred and fifty‐one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self‐reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor‐partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL. Results: Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing. Conclusions: Supporting symptom management in Black patient/caregiver dyads may improve their QOL.
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.
Background: Stakeholder engagement can enhance interpretation of research findings and promote meaningful dissemination into policy and practice. Methods: Several organizations dedicated to understanding the needs of diverse older adults and family caregivers and advancing practice and policy to improve their health came together in a series of discussions. More than 120 participants, including family/friend caregivers and their advocates and leaders and researchers from public and private organizations, generated an action agenda for those engaged with family caregivers in service delivery, research, and policy across three virtual sessions. Findings: Although there are common experiences and demands for caregivers, the meanings of these experiences are shaped by a cultural context, and the intersectionality of caregiver experiences by age, race/ethnicity, gender identity, sexual orientation, immigrant status, and other factors bring into focus the diversity of life and caregiving experience. Conclusions: This heterogeneity of experience crystalizes the importance of assuring the caregiver is at the center, and that design for programs, research, and policy recognize the importance of understanding caregivers and their unique needs before pre-supposing solutions.
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.
Purpose: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. Design and Methods: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. Results: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). Implications: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services.
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.
Background: Latinas with breast cancer draw on a diverse range of family members for informal care. Latin cultures typically prescribe high levels of support and care for an ill family member that leave caregivers vulnerable to compromised well-being. Method: In this cross-sectional survey study, 258 family caregivers of Latinas with breast cancer completed reports of psychological distress, availability of social support, and acculturation. Results: Mothers who provide care to a daughter with breast cancer experience higher levels of psychological distress and report lower availability of informational support than most other types of family caregivers. Mothers' lower levels of acculturation may at least partially explain these reductions in well-being. Discussion: This study highlights the diverse range of family and fictive kin who participate in family caregiving for Latina breast cancer survivors. Spousal caregivers may not represent a unique population, whereas mothers as caregivers are indeed distinct for their higher distress levels.
Background: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Background/Objectives: While it is well‐known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early‐onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Methods: Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. Results: The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co‐morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how‐to videos on caring for a loved one but also topics related to self‐care for caregivers. Conclusions: Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self‐efficacy. Better access to dual‐language information and support could encourage early help‐seeking but also improve caregivers' quality of life as they manage long‐term caregiving responsibilities.
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.
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.
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.
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.
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.
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.
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.
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.
Background: Little is known about heart failure (HF) caregiver self-care. Methods: This article reports a secondary analysis of data from a cross-sectional, descriptive study involving 530 HF caregivers. A three-step latent class mixture model identified HF caregiver classes at risk for poor self-care and examined the relationship between the identified self-care classes and caregiver burden and depression. Caregivers completed online surveys on self-care, caregiver burden, depression, problem-solving, social support, and family function. Results: Caregivers were 41.39 (±10.38) years old, 78.3% Caucasian, and 50.9% men. Three classes of HF caregivers (24% Low-Risk, 24.9% Moderate-Risk, 51.1% High-Risk) were identified. High-Risk caregivers had the worst self-care and the lowest levels of social support, problem-solving, and family function. Moderate-Risk caregivers were the most experienced and had the best self-care yet had the most comorbidities. High-Risk caregivers reported more caregiver burden and depression. Conclusions: "At-risk" caregivers may benefit from self-care and support programs, but more research is needed.
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.
Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.
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.
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.
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.
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.
Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918
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.
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.
Objective: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. Methods: One seventy nine youth with type 1 diabetes (ages 12–18 years) and caregivers completed the DFCS‐Revised as well as assessments of adherence, psychosocial functioning, and diabetes‐related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. Results: Confirmatory factor analyses in the validation sample supported the use of a six‐item short form (DFCS‐SF) either as a total score (6‐items) or a direct (3‐item) and indirect (3‐item) score. Variations of the DFCS‐SF (three items of the 6‐item short form) also had acceptable model fit. The short‐form questionnaires had acceptable internal consistency and convergent validity (6‐item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3‐item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS‐SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS‐SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes‐related stress, and more psychosocial concerns. Conclusions: The DFCS‐SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non‐optimal adherence, diabetes‐related stress, and psychological distress.
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.
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.
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.
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.
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.
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.
Background: Although caregiver identity theory asserts there is no single generic caregiver identity, comparisons on demographic characteristics and burden of care have not been made among caregivers of persons with various health conditions. Methods: Using social media to access study participants, this cross-sectional study of 234 family caregivers of persons with various health conditions examined their demographic characteristics (age, gender, and race/ethnicity) and burden of care (daily care hours and caregiving years) using online data collection. Results: Nine groups of caregivers were formed by the care recipient’s health condition. Caregiver groups were similar in gender (95% women) and race/ethnicity (88% white), and differed on age (F=4.74; p<.001) daily care hours, and caregiving years (F’s=2.76 and 2.84; p<.01). Conclusions: The findings suggest that caution is needed when recruiting caregivers through social media as the sample may not represent all caregivers. However, differences by care recipient condition on age and burden of care warrant further consideration.
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.
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.
Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.
Aims: This paper aims to identify sociodemographic and care characteristics of dependent older adults, formal and family caregivers in municipalities from different Brazilian regions. Methods: A cross-sectional study was carried out with a sample of 175 people, of whom 64 were older adults, 27 formal caregivers, and 84 family caregivers. Semi-structured interviews were conducted with specific questions for each group on the theme of care and dependence. Most older adults were female, aged 80 years or older, with low education and have been dependent for four years or more. Findings: Older adults reported feelings of loneliness, pointed out difficulties in medical care, and 29% had only access to Primary Health Care actions. Inequalities, burden, illnesses, and social problems were found among family caregivers. Black females with no formal employment, little or no training for the function, and low remuneration predominated among formal caregivers, and care was associated with domestic chores. Conclusion: We can conclude that gender and race inequalities persist in the care of dependent older adults, and we observed that the rigid social roles assigned to men and women in Brazil persist in the family and work dynamics in caring for the dependent older adults.
Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.
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.
This briefing looks at Black, Asian and Minority Ethnic (BAME) young carers and their specific and unique needs. BAME young carers have long been recognised as particularly vulnerable. The term BAME is inclusive of those who may have vastly different issues and vulnerabilities including within their own communities. For example, there are differences within Black, Minority Ethnic and many Asian families and communities. Asian communities themselves vary drastically also depending on their country of origin and time spent in the UK. Much of our research is focused on issues within Asian communities, predominantly South Asian, as that is the highest BAME demographic within our young carers’ services. The sheer breadth of different communities we work with is demonstrated in the chart below. Therefore, in this report the term BAME relates mostly to South Asian families.
Purpose Relatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers. Methods Responses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB. Results Over 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications. Conclusions Caregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients. Implications for Cancer Survivors African American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.
Resilience and stress are important factors in the caregiving experience, but research has yet to examine their association among American Indian (AI) caregivers. This study examines resilience and stress in a group of Hopi female caregivers. Data came from the Hopi Adult Caregiver Survey (2017), which conducted interviews with 44 Hopi women who were providing care without remuneration to an adult family member. Measures included the abbreviated Connor-Davidson Resilience Scale (CD-RISC-10), the Perceived Stress Scale (PSS-10), and questions about caregiver characteristics, care recipient characteristics, social support/ community support, and cultural factors. Stress and resilience were looked at above the median (higher stress or higher resilience) and below the median (lower stress or lower resilience). Caregivers who reported relatively lower resilience were more likely to report that they lived separately from their care recipients and that all Hopis are expected to be caregivers. Caregivers who reported relatively higher stress reported a higher total number of caregiver difficulties, a poorer self-perception of their own health, use of a traditional healer in the past 5 years, and that females are expected to be caregivers. A regression analysis adjusting for age, education, and employment status indicated that higher resilience among the caregivers was significantly associated with lower stress. In light of these findings, programs working with AI caregivers may wish to explore whether supporting the resilience of these caregivers is a means towards limiting their stress.
Objectives: To examine racial differences in respite utilization among a nationally representative sample of caregivers for persons living with dementia (PLwD). A secondary aim identified factors associated with respite utilization. Methods: Using data from the 2015 National Health and Aging Trends Study and National Study of Caregiving, we conducted binary logistic regression to examine racial difference in respite use among Black and white caregivers (n = 750). Results: 22% of the sample used respite for PLwD. Black dementia caregivers were 69% less likely (odds ratio: .31, p = .001) to use respite compared to white caregivers. Other factors associated with utilization included education, receiving help with caregiving, and providing care for more self-care/mobility tasks or to a Medicaid-enrollee.Discussion: Findings suggest that Black dementia caregivers may be at risk for less frequent use of respite and highlight the need to identify factors that promote respite use.
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.
Background: Informal caregivers for persons with traumatic brain injury (TBI) face a range of unique issues, and racial/ethnic group differences in caregiver challenges are poorly understood. We undertook a scoping study of peer-reviewed literature to assess the quantity and quality of available research describing differences by race/ethnicity in informal caregiving roles and burden. Methods: Using Arksey and O'Malley's framework and guided by the Preferred Reporting Items of Systematic Reviews and Meta-analyses Extension for Scoping Reviews, we conducted electronic searches of PubMed, CINAHL, PsycARTICLES, PsycINFO, Social Work Abstracts, Embase, and Scopus to identify peer-reviewed studies that examined TBI informal caregiver burden and reported on the influences of race or ethnicity. Results: Among 4523 unique publications identified and screened, 11 studies included sufficient race/ethnicity data and were included in the analysis. Of these, six studies described civilian populations and five described military Veterans Affairs (VA). Included studies revealed that nonwhite caregivers and white caregivers use different approaches and coping strategies in their caregiving role. Some studies found differences in caregiver burden by race or ethnicity, others did not. Most were limited by a small sample size and overdependence on assessment tools not validated for the purposes or populations for which they were used. This was particularly true for race/ethnicity as a factor in TBI caregiver burden in VA groups, where essential characteristics moderate the association of race/ethnicity with socioeconomic factors. Conclusions: This scoping study highlights the paucity of information on race/ethnicity as a factor in TBI caregiver burden and roles, and suggests that innovative and alternative approaches to research are needed to explore needed changes in practice.
Background and Objectives Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects. Research Design and Methods Study participants include white (n = 992) and black (n = 556) respondents to the 2015 National Study of Caregiving who assisted community-dwelling older adults with disabilities who participated in the National Health and Aging Trends Study. Guided by Pearlin's Stress Process Model, hierarchical logistic regression models were constructed to examine race differences in caregiving-related effects after adjusting for caregiving context, stressors, and resources. Results Relative to white caregivers, blacks more often provided in excess of 40 hr of care per week (54.3% vs 38.6%) and more often cared for an older adult with dementia (27.1% vs 20.7%) who was living below the federal poverty line (31.7% vs 11.9%) or was Medicaid-eligible (42.2% vs 11.8%). Black caregivers more often used supportive services (32.9% vs 24.8%). In fully adjusted regression models, black caregivers were more likely to report gains and less likely to report emotional difficulty than whites. Service utilization did not attenuate caregiving-related emotional difficulty or participation restrictions, regardless of race. Discussion and Implications Findings highlight caregiving disparities and counterintuitive differences in experiences and indicate the importance of identifying supports such as paid family leave and faith and community-based programming to better support community-dwelling low-income older adults and their family and unpaid caregivers.
Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed world-wide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing. Methods: Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis. Results: Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops. Conclusions: Despite the paucity of research and resources found, important exemplars demonstrate that existing programs can be adapted to support Indigenous people with ASD and other neurodevelopmental disorders. While future policy should endeavour to facilitate Indigenous people's access to support services, and encourage researchers to develop and evaluate programs promoting psychosocial wellbeing for this population, given complexities of designing and evaluating new programs, careful and appropriate cultural adaptations of existing evidence-based programs would increase feasibility of ongoing research without compromising outcomes.
While it is known that informal carers provide the majority of caregiving in Australia, there remains limited understanding of the challenges that regional carers face in their caring role and the impact of the caregiving role on carer well‐being. Objective: The aim of this study was to better understand the health status of caregivers as the person they care for was entering the National Disability Support Scheme. Design: This is a mixed‐methods study. Setting: The study was undertaken in regional New South Wales, Australia. Participants: Seventy‐five carers were enrolled into the study. All lived in regional New South Wales. Main outcome measure: The World Health Organization Well‐being Index was used for quantitative data collection, and semi‐structured interviews were undertaken for the collection of qualitative data. Result: Quantitative data indicated that carers from Aboriginal or Torres Strait Islander backgrounds and those from low socio‐economic status had significantly lower scores on the well‐being index. Two key qualitative categories were evident describing carer's journey to resilience by (a) adjusting to reality predominantly through cognitive reframing strategies and (b) carers accessing external supports. Conclusion: The health status of regional carers who are predominantly women is experiencing low levels of well‐being. While many of these carers have initiated successful coping responses to the challenges of caring, there is an urgent need to increase the supports available to this population. As the recent National Disability Support Scheme is embedded, it is of importance to monitor if there are improvements in the health status of carers over time.
Objective: Informal caregivers play a fundamental role in care and decision making with hematological cancer patients. Concordant patient‐caregiver communication is a critical antecedent to high quality decision making. Little is known about patterns of dyadic communication throughout the cancer treatment continuum. The objective of this study was to assess patterns of cancer communication concordance regarding treatment and care among hematological cancer patients undergoing active treatment and their informal caregivers and test whether patterns were associated with participant characteristics. Methods: A case series of hematological cancer patient‐caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Latent Class Growth Models (LCGM) were used to analyze longitudinal data captured using Cancer Communication Assessment Tool for Patients and Families (CCAT‐PF) and the association with participant characteristics. Results: White patient‐caregiver dyads demonstrated decreased communication concordance and African American dyads demonstrated increased communication concordance over time. Lower communication concordance was found among dyads with lower levels of education and income, and cancers diagnosed at more advanced stages; these relationships were stable over time. Modeling identified the presence of three distinct communication groups (Stable Concordant (57.4%), Fluctuating Medium Concordant (37.8%), High Discordant (5.4%)) that differed by baseline level of communication concordance, patterns of concordance over time, race, income and the dyad relationship. Conclusions: Patient‐caregiver cancer communication concordance was not static overtime. Results suggest the presence of a new dyadic cancer communication typology that could help preemptively identify dyads at risk for communication difficulties that impede treatment decision making.
Objective: Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL.; Methods: Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options.; Results: At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05).; Conclusion: Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term.; Practice Implications: The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds.
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.
Caring for a family member with Alzheimer's disease (AD) or a related dementia is stressful, and this may especially be the case for racial/ethnic minority caregivers. This study examined the feasibility and acceptability of a pilot intervention for Vietnamese American dementia caregivers. A secondary, exploratory aim was to examine post-intervention effects on AD knowledge and psychosocial outcomes. Of the 87 individuals contacted, 32 met inclusion criteria. Of this number, 14 enrolled in the study with 11 caregivers completing the intervention, and 10 of the 11 completing 3-month follow-up data. Caregivers provided positive feedback on the intervention and had higher scores on AD knowledge and self-efficacy in seeking support services post-intervention, with the effect on self-efficacy maintained at 3-month follow-up. Recruitment for the intervention was difficult; however, once caregivers came to the first session, they were engaged and found the classes informative. Recommendations for a future intervention are discussed.
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.
The purpose of this study was to gain an understanding of the ambiguities and uncertainties experienced by a diverse group of African-American caregivers. The study applied Schlossberg's transition theory (TT) and Mishel’s revised uncertainty theory to narratives of self-identified African-American caregivers who provided care at least 5 h a week. The men (6) and women (8) were mostly unmarried, mostly caring for a parent or grandparent. The caregivers’ average age was 52 (SD = 19; ages ranged from 24 to 82 years); and the care recipients’ average age was 84 (SD = 9). Six care recipients had dementia and the remainder had multiple disease diagnoses. Narratives were obtained by in-depth interviews or focus group discussions. These were audio-recorded, transcribed verbatim professionally and analyzed independently by trained coders. Schlossberg’s TT contextualized whereas Mishel’s RUIT illuminated the characteristics of the transition, its associated uncertainty, and their relationship to the development of caregiver stress. Situational factors such as difficulties with illness symptoms of the care recipient, conflict between previous experience and current expectations and the adjustments to the new caregiving role, burdened younger caregivers more than older caregivers. Self-factors related to lack of knowledge about the illness and feelings of lack of control. Social support was predominantly provided by family members, and its absence resulted in conflict among siblings and caregiver stress. The most common coping strategies include religiosity, expectations of reciprocity, and coming to terms with the uncertainty. Understanding the feelings, perceptions and needs of caregivers in transition is tantamount to providing nursing care.
Chronic kidney failure may contribute to the diminished quality of life of African American women who care for adults affected by the disorder. Few studies document the quality of life of these caregivers. For this descriptive correlational study, caregiver demographic, caregiver burden, depressive symptoms, family functioning, and quality-of-life self-report data from 75 African American women were extracted from an existing database. Ferrans’ Conceptual Model of Quality of Life guided the selection of study variables. Several significant associations were found. Caregiver education, employment status, marital status, and caregiver burden explained 63% of the variance in the caregivers’ quality of life. Findings support the need to explore further and design interventions to improve the quality of life of working African American women supporting individuals with chronic kidney failure.
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.
Objectives: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. Design: Cross-sectional survey.Setting: 13 geographically dispersed Alzheimer's Disease Centers across the United States.Participants: 431 racially diverse caregivers of persons with dementia. Measurements: Survey on Care Planning for Individuals with Dementia. Results: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. Conclusions: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
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.
Background: Despite the integral role that women play in the care of older adults in South Asian families, limited empirical data are available on the impact of migration from South Asia to England. The purpose of this research was to examine caring for a family member with dementia from a gender role perspective. Methods: Data were gathered in two phases: (1) focus groups and (2) semi-structured interviews. Focus groups were held with the general public, and semi-structured interviews were conducted with family carers. Data were audio-recorded and analysed using thematic analysis. The NVivo qualitative software was utilised to simplify the thematic analysis. Results: While traditionally family care for frail older adults has been mainly provided by women in South Asian families, the samples in this study revealed how women's attitudes towards caregiving are changing in British societies. Conclusion: There is a dearth of research about socioeconomic transformations in South Asian women's migration to Western countries that could contribute to deterring them from providing family care. More research is warranted to understand the ways in which migration shapes gender relations in South Asian families and its impact on care for the frail elderly.
The transition for young adults with disabilities from high school to gainful employment is often difficult. This transition is even harder for students from minority or marginalized backgrounds, including young adults who identify as Latino. As the Latino population increases in the United States, it is imperative that the transition from high school to employment becomes more effective for Latino young adults with disabilities. Using a portion of Bronfenbrenner's Model of Human Development as a framework, we explore the experiences of Spanish-speaking Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence family systems as young adults with disabilities prepare to transition from high school to adulthood. Our findings highlight important factors in the micro-, meso-, exo-, and macrosystems, including the importance of family and community, distrust of authority, and the impact of discrimination. Implications for practice and future research are discussed.
New research by Oxfam and partners reveals that while COVID-19 and the related containment efforts have caused increases in women’s – and men’s – unpaid care workloads, women are still doing the bulk of this work. Women living in poverty, single mothers and essential workers as well as those belonging to minority racial and ethnic groups are being pushed furthest to the margins. It shows the real consequences this has for the health, economic security and wellbeing of these women and their families. Women report feeling more anxious, depressed, overworked or ill because of their increased unpaid care work. Care work is essential to the healthy functioning of our societies and economies and must be better supported through policy and social norms change. Care work must be at the heart of a feminist COVID-19 recovery.
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.
Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing. [...]
Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy.
Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.
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.
Objective: The purpose of this study was to test two 2-month psychosocial interventions (Telephone Interpersonal Counseling [TIPC] and Supportive Health Education [SHE]) to improve quality of life (QOL) outcomes for Latinas with breast cancer and their informal caregivers. Methods: Two hundred and forty-one Latinas with breast cancer and their caregivers were assessed at baseline, immediately after the 2-month intervention, at 4 and 6 months after baseline. QOL outcomes were psychological distress, symptoms and social support. Results: Linear mixed effects models showed that for cancer survivors at 2 months, TIPC produced lower adjusted mean depression scores compared to SHE. At 4 months, SHE had reduced total number of symptoms, global symptom distress, and social isolation compared to TIPC. Only total number of symptoms was lower in SHE than in TIPC at 6 months. Among caregivers at 2 months, total number of symptoms, global symptom distress, and anxiety were lower, and self-efficacy for symptom management was higher in SHE compared to TIPC. Caregiver depression was lower in TIPC compared to SHE at 4 months. Conclusions: These telephone delivered interventions improved different outcomes. TIPC demonstrated superior benefits for depression management and SHE was more successful in anxiety and cancer-related symptom management.
Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions.; Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden.; Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school.; Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving.
Aim: Nurses are teachers to their patients and need to know best practices for diverse families living with dementia. Little is known about Hispanic beliefs around dementia knowledge and self-efficacy that may have an impact on the learning situation. Design: A pre-/postresearch design was used in this intervention study with a baseline assessment of dementia knowledge and caregiver self-efficacy and a reassessment at training completion. Methods: Investigation of education training with two caregiver groups caring for persons with dementia: Caucasian and Hispanic. Convenience sample consisted of 567 Caucasians and 104 Hispanic dementia caregivers. Groups received training in their primary language accompanied by a training book (Dealing with Dementia Guide) also in the primary language. Results: Dementia knowledge and caregiver self-efficacy increased in both groups with the Hispanic group demonstrating significantly greater increase in self-efficacy. The Caucasian group had a significantly greater increase in the dementia knowledge compared with the Hispanic group.
Objective: Both caregivers and the older adults they care for can experience declines in quality of life (QOL) over the course of the dementia trajectory. Little research has examined QOL in African-American caregivers and even less in African-American persons with dementia (PWDs), making it difficult to identify associated factors. Method: Guided by the Negro Family as a Social System framework, a secondary data analysis was used to examine the influence of family structure, instrumental and expressive role functions on QOL in a sample of 62 African-American dementia dyads (i.e. African-American PWDs and their African-American caregivers). Dyadic data were analyzed using multilevel modeling to control for the interdependent nature of the data. Results: On average, African-American PWDs reported significantly worse QOL than African-American caregivers. Within African-American dementia dyads, QOL covaried. African-American PWDs experienced significantly worse QOL when their caregiver was a non-spouse and they themselves perceived less involvement in decision-making. In addition, African-American caregivers experienced significantly worse QOL when they reported greater dyadic strain with the African-American PWD and were non-spouses of African-American PWDs. Conclusion: Findings suggest understanding the interpersonal characteristics (e.g., dyadic relationship, family structure and role functions) of dyads may hold promise for improving their QOL.
Purpose/objective: This commentary demonstrates the need for culturally adapted interventions to support informal caregivers (care partners) of adults with traumatic brain injuries (TBI), proposes and supports an evidence-based intervention, Problem-Solving Training (PST), uniquely suitable for cultural adaptation for Latinx care partners, and describes several considerations and concrete suggestions for initial cultural adaption of PST for Latinx care partners of adults with TBI.; Results: Caregiving among Latinxs is rooted in cultural values and norms that may facilitate or challenge family coping and adaptation after TBI in the United States. Evidence-based interventions to address emotional distress, health, and caregiver burden are needed for Latinx care partners, but must first be translated and adapted to address language and cultural values. Compared with other cognitive and behavioral evidence-based interventions, PST is ideal for cultural adaptation, as the problem-solving process is driven by, and therefore sensitive and responsive to, care partners and their individual values and situations.; Conclusions/implications: Adapting evidence-based problem-solving interventions like PST ("Descubriendo Soluciones Juntos") to be culturally tailored and culturally sensitive for Spanish-speaking Latinx care partners of adults with TBI could reduce existing health disparities and improve the health, well-being, and quality of life of these care partners.
The number of Latinos with Alzheimer's disease (AD) is projected to more than double by 2030. Yet, the current literature is lagging on Alzheimer's caregiving among Latinos. This study explores how Mexican origin women experience dementia caregiving, and the coping strategies they use to manage their caregiving situations. Nine women were identified as caregivers of a family member with AD or dementia from a larger study on caregiving. Interviews with them were collected and subsequently analyzed using a modified grounded theory approach to reduce the data to identify thematic content. All but one participant described caregiving as "tiring," "wearing," or "hard." They reported suffering from stress, insomnia, nervousness, migraines, and/or depression because of their caregiving experiences. Participants engaged in various coping strategies to help combat the perceived negative consequences of their caregiving experiences. The most commonly reported strategies were various forms of distraction, and meditation or prayer. The Mexican origin women in this study experience faced two types of interpersonal challenges related to dementia caregiving: changes in the care receiver's personality and behaviors, and physical care needs. They engaged in various coping to strategies to address the difficulties of their situation. This study provides formative research for identifying research questions and topics of examination in the future.
Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.
The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.
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.
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.
Background and Objectives Caregivers need to understand their health status and the disabilities of the care recipient to engage in effective health management. Infographics tailored with personal health data are a promising approach to facilitating comprehension, particularly for individuals with low health literacy/limited English proficiency. Such approaches may be especially important for dementia caregivers given the high care burden. Research Design and Methods Guided by the Health Belief Model and the Data-Frame Theory of Sensemaking, we conducted iterative participatory design sessions with Hispanic family caregivers (N = 16) of persons with dementia. We created multiple prototype infographic designs to display scores on validated instruments of topics such as caregiving burden, overall health, and psychological distress. We retained and refined designs participants judged to be easily comprehensible. Analysis focused on identifying the graphical elements that contributed to the comprehensibility of designs and on evaluating participants' reactions to the designs. Results Successful infographics used intuitive scaling consistent with caregivers' perspective of dementia as inevitable decline. Participants reacted to infographics by describing the self-management actions they would take to address the health issue at hand. Discussion and Implications Tailored infographics supported caregivers' comprehension of their health status and served as cues to engaging in self-management. As such, they should be presented in the context of informational support that can facilitate selection of appropriate next steps. This can mitigate the potential mental and physical health consequences of caregiving and enable caregivers to continue to care for their relatives with dementia with less damage to their own well-being.
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.
Among the 50+ million informal caregivers in the US, substantial gender, racial/ethnic, and socioeconomic disparities in caregiving intensity are well-documented. However, those disparities may be more nuanced: gender disparities in caregiving intensity may vary by race/ethnicity (White, Black, and Hispanic) and socioeconomic status (SES). We used data from the 2011 National Study of Caregiving and applied generalized linear models to estimate associations between three measures of caregiver intensity (ADLs, IADLs, and hours caregiving/month) and the three sociodemographic factors with their interaction terms. Black female caregivers provided significantly higher levels of care than White females and males for both IADL caregiving and hours/month spent caregiving. Black caregivers spent an average of 28.5 more hours/month (95%CI 1.7-45.2) caregiving than White caregivers. These findings highlight the need to understand the complex disparities within population subgroups and how intersections between gender, race/ethnicity, and SES can be used to develop effective policies to reduce disparities and improve caregiver quality-of-life.
We aimed to explore the coping strategies utilized by Latino caregivers of people with Alzheimer's disease or related dementia (ADRD). We conducted 16 semi-structured interviews with Latinos family caregivers. The interviews explored the caregivers' experiences utilizing coping strategies. Coping strategies were identified based on a direct content analysis of the interviews. Participants were 50 to 75 years old, majority female, and from Mexico. The most common coping strategies adopted were: rationalization, social interactions, physical activity, and leisure activities. Other strategies used included avoidance, keeping busy, self-care, and spirituality or faith. Strategies such as using social interactions and spirituality and faith may be rooted in Latino cultural values such as familismo and fatalismo. The possible origin from cultural values might make some of the coping strategies more prevalent or effective in Latinos. Effective interventions aiming to reduce stress in Latino caregivers should prioritize culturally relevant problem-focused coping strategies.
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.
The purpose of this study is to explore variations in family support for Latino dementia caregivers and describe the role of the family in dementia caregiver stress processes. Content analysis is utilized with themes derived inductively from 16 in-depth interviews with Latino caregivers recruited in California from 2002 to 2004. Three types of family support are described: extensive (instrumental and emotional support from family, n = 3), limited (instrumental support from one family member, n = 7), and lacking (no support from family, n = 6). Most caregivers report limited support, high risk for burnout and distress, and that dementia-related neuropsychiatric symptoms are obstacles to family unity. Caregivers with extensive support report a larger family size, adaptable family members, help outside of the family, and formalized processes for spreading caregiving duties across multiple persons. Culturally competent interventions should take into consideration diversity in Latino dementia care by (a) providing psychoeducation on problem solving and communication skills to multiple family members, particularly with respect to the nature of dementia and neuropsychiatric symptoms, and by (b) assisting caregivers in managing family tensions - including, when appropriate, employing tactics to mobilize family support.
Background: Due to its labour migration history, Belgium is confronted with an increasingly older population of people of Moroccan background who have been diagnosed with dementia. These migrants came to the country during the labour migration wave of the nineteen-sixties and seventies to work in mines and other industries and they are now ageing. Yet little is known about how dementia care is provided to this older population.; Objectives: This study explores how dementia care is provided to these Moroccan older people with dementia, and what challenges do caregivers face in providing care.; Methods: A qualitative study including 31 informal caregivers of older Moroccan migrants with dementia and professional caregivers in the field of dementia care in several Belgian cities was conducted. After an initial focus group including 6 informal and professional caregivers, individual in-depth interviews were held with 12 informal caregivers of Moroccan decent and 13 professional caregivers. In order to be included in the study, informal caregivers had to have a recent experience in caring for an older family member with dementia. The professional caregivers had to be active in the field of dementia care (General Practitioners, nurses, psychologists,…) and have experience with older migrants with dementia.; Results: Analyses of the collected data reveal that current dementia care is a challenging, complex and dynamic search process. This process is shaped by (1) multiple factors reflecting the changing care needs of the care recipient during the course of the dementia, (2) the individual (transnational) recourses of the informal caregivers and the (3) current (lack of) accessibility of professional dementia care (driven by the absence of an accessible migration-, culture- and religion-sensitive professional care). The limited professional service-use is predominantly compensated through the search for transnational external helpers. The limited migration, cultural and religious sensitivity of current dementia care is often overlooked by professional caregivers.; Conclusion: The study provides a better understanding of the complex reality of dementia care for older migrants in which these different aspects intersect. This understanding enable health professionals and policy makers to develop a better suited care for older migrants with dementia.
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.
Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.
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.
AimTo co‐produce consensus on the key issues important in educating mental health‐care professionals to optimize mental health medication adherence in Black, Asian and Minority Ethnic (BAME) groups. Objectives To identify perceptions of factors enabling or disabling medication adherence. To achieve consensus on content and delivery of an educational intervention for mental health‐care professionals. Methods Data were collected from 2016 to 2018. Using individual interviews and a consensus workshop with carers and service users (SUs treated under the 1983 Mental Health Act 1983/revised 2007 for England and Wales), the experience of taking prescribed mental health medication and perspectives on adherence were explored. Data were analysed using 2‐stage qualitative coding via the software tool NVivo version 11 to analyse transcribed data and to produce the main explanatory categories. Results SU and carer participants' perspectives substantially altered the original research design. The need to educate students rather than trained professionals was emphasized, and they suggested that educational content should be packaged in a contemporary manner (a virtual reality experience). Findings indicated that education should focus upon understanding the impact of taking prescribed antipsychotic medication on both SUs and carers. Discussion The importance of effective communication between health professionals, SUs and carers and a willingness to learn about and appreciate how BAME culture influences perception of mental illness and mental well‐being were highlighted. Conclusion In working co‐productively, researchers need to be flexible and adaptable to change.
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.
BACKGROUND/OBJECTIVE Adult day services (ADSs) that provide community‐based supervised support for persons with dementia (PWD) may also function as a respite for familial caregivers to attend to self‐care needs. Guided by a revised version of the Andersen Healthcare Utilization Model, the objective of this study was to identify the association between use of ADSs and a missed physician's appointment among family caregivers for community‐dwelling familial PWD. A secondary objective was to identify other predisposing, enabling, and need factors associated with a missed physician's appointment. DESIGN Secondary analysis of baseline, cross‐sectional data from two randomized controlled trials (Advancing Caregiver Training, n = 272; and Care of Persons With Dementia in Their Environments, n = 237). SETTING Community. PARTICIPANTS Community‐dwelling caregivers for PWD (n = 509). MEASUREMENTS Missed physician's appointment was measured using the caregivers' self‐report of one or more missed physician's appointments (yes/no) in the past 6 months. ADS use was measured using the caregivers’ self‐report of ADS use (yes/no). RESULTS Over a third of the caregivers utilized ADSs for their PWD. Caregivers who utilized ADSs for their familial PWD were 49% less likely (95% confidence interval = 0.32‐0.81) to miss a physician's appointment in the past 6 months. More black compared to white caregivers missed appointments regardless of ADS use. Caregivers with increased chronic health conditions were more likely to miss a physician's appointment compared to those with fewer conditions. CONCLUSION ADSs’ provision of respite enables caregivers the time to address self‐care needs by decreasing the likelihood that caregivers miss a physician's appointment. Findings suggest that ADSs may promote positive health behaviors for caregivers and should be expanded as part of comprehensive dementia care for families. Factors associated with missed physician appointments need further examination and intervention to support black caregivers.
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.
Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:
As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.
Background and Objectives: Recognizing the important role that dementia-specific adult day centers have in maintaining persons with a neurocognitive disorder in their home, this article examines three critical indicators at the time when people first enroll in such a center: cognitive and functional impairment of the enrollee, and burden reported by their family caregivers. We also considered variations in these 3 indicators by race/ethnicity and by the relationship of caregiver to the new enrollee.; Research Design and Methods: We conducted a secondary analysis of data collected by a nonprofit organization operating 11 dementia-specific adult day centers located on the east coast of Florida. Nursing staff conducted intake interviews with enrollees and their caregivers, and assessed functional status within one month of admission. Instruments included the Zarit Burden Scale and components of the Minimum Data Set: the Brief Interview for Mental Status (BIMS) and 4 measures of functional status.; Results: On average the cognitive scores of newly enrollees were well-within the range indicated for severe impairment, and these levels did not differ by race/ethnicity. Burden reported by caregivers however differed significantly, with Latinx caregivers reporting the greatest burden and African American/Black caregivers reporting the least. Further, while daughters generally reported higher levels of burden than other family caregivers, Black daughters reported the least.; Discussion and Implications: Results suggest a need for greater dissemination efforts about adult day programs to the Latinx community, as well as attention to the disparate burden placed upon differing family relationships of caregivers to enrollees.
Objective: To examine differences between White and African American caregivers in strain, health, and service use in a population-based sample of informal caregivers for older adults. We also assessed whether relationship type (parent, other family, friend) and dementia care status (yes or no) were moderators of any racial differences. Method: We examined 887 informal caregivers via covariate-adjusted 3 × 2 × 2 factorial ANOVAs. Results: After covariate adjustment, there were few significant racial differences in caregiving strain, health, and service use. Dementia caregivers reported greater strain, and there were three-way interactions among relationship type, dementia care status, and race for physical strain and emotional stress. Discussion: Previous findings suggesting substantial racial differences in caregiver strain, which have primarily come from convenience samples that combined care relationship types, were not replicated. Racial and ethnic differences in caregiving may be context-specific. Historical changes in caregiving should be examined in future research.
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.
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.
Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). Intervention: Participants were randomized to 6 months of NYUCI (n=110) or REACH‐OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. Measurements: The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). Results: There were no differences in outcomes between NYUCI and REACH‐OUT. Both interventions showed a reduction in burden (REACH‐OUT: 5.2 points, 95% confidence interval (CI)=2.2–8.1, p<.001; NYUCI: 4.6‐points, 95% CI=1.7–7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. Conclusion: Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.
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.
American Indian (AI) communities experience a disproportionate rate of Type 2 diabetes (T2D) and cumulative exposure to stress. Although this link is well researched among various populations, it has not been examined among AI communities. Path analysis was used to examine a multiple-mediator model to explain how caregiver stress influences self-reported mental and physical health among 100 AI participants with T2D. Caregiver stress was negatively associated with physical and mental health. Physical health was positively associated with family/community connectedness and mental health was positively associated with both family support and connectedness. The relationship between caregiver stress and mental health was partially mediated by family/community connectedness; caregiver stress had no indirect effects on physical health via either hypothesized mediator. Findings demonstrate the importance of integrating individuals’ connection to family and community and its influence on caregiver stress and mental health in intervention programs targeting diabetes management and care among AI communities.
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.
Background Family caregivers are actively involved in medication management, yet little is known about factors associated with caregivers' involvement in this role and how that information can be utilized to engage caregivers in the healthcare system. Objectives To explore factors associated with caregiver involvement in various aspects of older adults' medication management (i.e., ordering, keeping track or ensuring the correct medication is taken at the correct time, and injecting medications). Methods A retrospective analysis of two national surveys, the 2011 National Health and Aging Trends Study and the National Study of Caregiving was performed. Multivariate logistic regression models were used to examine the associations between demographic and caregiving variables with caregiver involvement in three medication management activities. Results Approximately two-thirds of family caregivers (N = 1369) were involved in one or more medication management activities. Factors associated with caregivers' assistance with ordering medications included being female, high frequency of involvement in instrumental activities of daily living (IADLs), involvement in medically-related activities, and caring for an older, less educated, or Hispanic care-recipient and individuals with lung disease or dementia (p < 0.05). Caregiver living arrangement, high frequency of involvement in activities of daily living (ADLs) and IADLs, involvement in medically-related activities along with care-recipient's race/ethnicity and having a dementia diagnosis were all associated with caregiver assistance in keeping track of medications (p < 0.05). Factors associated with assistance in injecting medications were caring for older adults with diabetes or stroke, or being involved in medically-related activities (p < 0.05). Conclusions Different demographic and caregiving factors were associated with caregiver involvement in various medication management activities. Recurring factors included race/ethnicity, certain care-recipient disease states, and caregiver involvement in IADLs and medically-related activities. Healthcare providers can play a proactive role in engaging caregivers in discussion about medication management and these findings can help practitioners more effectively target caregivers for education and support.
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.
Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.
Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P < .05), an association that was stronger for blacks. Interestingly, despite significant levels of objective burden, there was an association between lower depressive symptoms in black care recipients when there was an exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.
Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific 'incidents', especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants' understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.
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.
Informal caregivers may face barriers accessing services like respite care, training, and support groups. Using multinomial logistic regression, I modeled caregivers’ probability of using all services sought (“all services used”) and nonuse of any services sought (“any unused services”) as a function of caregiver and care-recipient characteristics. Care-recipient health and function, especially dementia and need for medical task assistance, were associated with all services used and any unused services, and any unused services were more likely among adult children caring for their parents, caregivers of Black and Hispanic older adults, caregivers providing intensive care, caregivers living in metropolitan areas, and residents of states that spend more on increasing access to caregiver services under the National Family Caregiver Support Program. Regularly scheduled caregiving was associated with higher likelihood of all services used, but not with any unused services. Steps should be taken to increase access for caregivers who provide intensive care, care to dementia patients, or assistance with medical tasks and for Hispanic families.
Objective: A paucity of research exists on burden of care (BoC) and factors associated with it among minority groups, such as Ultra-Orthodox Jews. The aims of this study were (1) to portray the profile of Ultra-Orthodox Jewish (UOJ) caregivers and their BoC;(2) to explore relations between care recipients' characteristics, care situations, characteristics of caregivers, and BoC. Methods: A total of 107 UOJ (66 women, 41 men) family caregivers were interviewed face to face in their homes, using valid and reliable measures. Results: Participants reported moderate BoC and high level of social support. Caregiver's self-rated health, caregiver's anxiety, and social support emerged as significant predictors of caregiver burden. Conclusions: Our findings might help social workers and other health professionals to better understand the unique characteristics of the UOJ community and to target caregivers with higher anxiety, lesser social support, and poorer self-rated health in order to reduce their caregiving burden.
The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.
Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.
This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider.
Research shows the stressful demands of caregiving to older family members can have negative effects on physical health. The effects on physical health may include: immune system functioning, heart rate reactivity, raised blood pressure levels, and increased risk of mortality among older spousal caregivers. Gender differences in caregivers' outcomes exist because, compared with male caregivers, female caregivers face higher levels of caregiving stressors, have fewer social resources, and report lower levels of psychological and physical health. Gender and education effects on health show that female caregivers experience more stress and have poorer health than male caregivers. African-Americans, unlike White caregivers, are more likely to provide care in collectivist versus individualistic caregiving systems. In the same notion, African-American caregivers are less likely to utilize formal support systems and African-Americans expressed stronger cultural reasons for providing care.
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
With a growing body of research on the situation of adult family caregivers in Germany, hardly anything is known about the situation of children who are involved into the care of their relatives. This literature study is part of a research project that intends to close this gap. Primarily, English literature of the last 15 years was analysed to gain insight into specific characteristics of young carers and their families. There is no standard definition of young carers. The prevalence of young carers has been underestimated for a long time; for Great Britain it is 1.5% of all children under the age of 18. Children provide caregiving tasks at any age, and the amount of their help grows with their age. The majority of young carers live in single-parent families, and the single parents are mostly mothers. More than half of the family members in need of care suffer from chronic illnesses that affect the body. There is a wide range of caregiving tasks described in the literature; young carers do the same as adult informal carers. However no uniform categorical system could be found, which makes comparisons between studies almost impossible. This might be due to a lack of a theoretical framework in most of the studies. Since it can be assumed, that children in Germany may become young carers as well, their situation needs to be studied under the specific circumstances of the German health care system.
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.
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.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.
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.
There are 500,000 Black Asian Minority Ethnic (BAME) carers in England. This report shows that BAME carers provide more care than average. They face additional difficulties as they care, struggling with language barriers, accessing culturally appropriate services and with stereotyping around caring. This puts them at greater risk of ill health, poverty, loss of employment and social exclusion. The report analyses existing provisions and sets clear recommendations for local authorities, health and well being boards, primary care trusts and GP consortia to improve services.
Objectives: The objective of this study is to examine the experiences of informal carers in terms of how their time spent caring is related to worry. Is worry about a care recipient a care practice, and if so, to what extent it can be understood temporally? Methods: Classical phenomenology underpinned this study. Three qualitative studies of people living with chronic illness in Australia were conducted between 2009 and 2013. Semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim. Phenomenological thematic analysis of the data was undertaken. Results: Twenty-five informal carers participated. The findings pivot around three interconnected themes: time, worry and cost. Worry was identified as a temporally bound unseen cost to carers that informs carer identity irrespective of culture, ethnicity, or social status. Discussion: Worry is a practice that most carers report engaging in and it is one that comes with a temporal cost—it keeps people busy looking after the needs of others during the day and it keeps some people awake when they would rather be sleeping. Worry takes time and effort, it informs people’s construction of their own sense of self, motivates acts of care, and informs carers’ imaginings of what their future and that of their loved one(s) may entail.
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.
We conducted a systematic review of the effectiveness of networked ICT interventions in supporting carers of people with dementia. Five bibliographic databases were searched and a total of 1,456 abstracts were identified as potentially relevant. From these we identified 15 papers describing five interventions: ComputerLink, AlzOnline, Caring for Others and two studies from the REACH project (TLC and CTIS). The interventions reviewed were multifaceted with elements of networked peer support. Outcomes were inconsistent but suggested that the interventions had moderate effects on improving carer stress and depression. Treatment effects were found to vary with care-giver characteristics such as ethnic groups, formal support and baseline burden. Further evaluation is needed in robust trials with good follow-up.
Despite the fact that African American, Latino, and Asian Americans represent the fastest growing segments of the population in the United States over the age of 65, they remain understudied in intervention research. This article describes the process of developing and implementing a psycho-educational intervention for African American caregivers which was informed by a review of the care giving and intervention literature, and stress, appraisal, and coping theory. The intervention included 12 modules that lasted approximately 90 minutes each. Participants were recruited from the local Alzheimer's Association, local area churches and social clubs, and primary care physicians. The article discusses issues that came up during the pilot test and highlights the importance of participant input, in the design, implementation, and evaluation of intervention programmes.
The special carer grant has so far failed to live up to expectations, especially in targeting ethnic minority carers. David Hepworth outlines what more needs to be done to help these 'hidden carers'.
Purpose – Uncertainty over ethical impact may hinder uptake of assistive technology (AT) in dementia. This study aims to examine whether AT contributes to person‐centred care, whether users can participate in research and to explore ethical dilemmas with users, family and professional carers.
Design/methodology/approach – People with dementia, at home or in residential care, and carers were allocated equipment and consulted about ethics. In a small, qualitative study, data were collected using semi‐structured interviews and vignettes and content‐analysed to establish themes.
Findings – AT in person‐centred dementia care requires meticulous assessment, reliability and availability in rapidly evolving situations. Users displayed insight, logic and empathy in ethical evaluation. They disliked remote monitoring and surveillance, whereas carers were pragmatic, prioritising safety.
Research limitations/implications – This research provides further evidence that users with dementia can be included in research. It demonstrates a significant potential role for AT in dementia care, with an ethical checklist to help professionals evaluate ethical dilemmas.
Originality/value – AT potentially increases wellbeing, enabling users to remain longer at home, delaying or avoiding moves to or between homes.
This paper discusses the experience of South Asian carers of a person with cerebral palsy. Previous research in this area has failed to explore carers' perceptions of causation or their views on the quality of service support. Qualitative interviews were carried out with twenty carers in two localities in the north of England with the aim of providing in‐depth contextualized data on their experiences over time, their attitudes towards cerebral palsy and their interactions with service provision. Results show that parents' views on causation differ markedly from explanations based on a medical, genetic model of cause. Parental attitudes towards cerebral palsy are shown to be influenced both by interactions with service professionals and by parents' ability to manage their situation. The absence of adequate material and emotional resources may foster a negative construction of disability by parents that, in turn, has detrimental effects on the individual with cerebral palsy. Parents' religious beliefs can act as a source of emotional support that helps them develop a constructive perspective on disability and deal with future uncertainty. We conclude that developments in service provision need to build on the perspectives of South Asian individuals and communities to respond effectively to their needs.
It has long been accepted that lack of social participation in wider society is one aspect or one definition of poverty. Current concerns with the extent and distribution of social capital as both a measure of a good society and as means to upward mobility also emphasise the importance of social contacts and networks to the well-being of individuals and communities. While research has often focused on ‘civic participation’ and the measurement of trust, more informal social bonds are also a crucial part of individuals’ social capital. Moreover, informal social capital or social participation might be particularly important for those whose circumstances make them already more vulnerable to marginalisation, exclusion or poverty. For example, social interaction has been argued to be conducive to better outcomes for those with health problems; and there is an extensive literature which aims to chart and explain the role of ‘ethnic capital’ in the life chances of minority ethnic groups. I use the British Home Office Citizenship Survey 2001 for England and Wales to explore the impact on four aspects of lack of social engagement of long-term illness, caring for someone with such an illness, and ethnicity. Controlling for a range of characteristics and examining the relationships separately for men and women there is evidence that between them, the four measures reveal an underlying propensity for reduced social contact. Other things being equal, illness has little association with reduced social participation, but caring does seem to affect opportunities for sociability. Members of some ethnic groups are less likely to engage in neighbourly social visiting than others, and these differences are little affected by income level. By contrast differences in ‘going out’ across groups can largely be explained by differences in income. Overall, social engagement among male Bangladeshis and to a lesser extent Pakistanis is high, whereas Black Africans and Black Caribbeans, especially women, are notable for their lack of opportunities for social engagement compared with their otherwise similar peers. They would appear to be particularly at risk of social isolation, with consequences for their current and future welfare.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
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.
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.
The National Black Carers and Carers Workers Network aims to ensure that the voices of carers from black and minority ethnic groups are heard. This article provides a brief overview of the work and main concerns of the Network.
People with learning disabilities have high dependency needs and high prevalence of physical, psychological and social morbidities. Some studies have shown that South Asian and white populations have a similar prevalence of learning disabilities and related psychological morbidity (McGrother et al, 2002), although other studies have shown an increased prevalence of severe levels of learning disabilities in the South Asian population (Emerson et al, 1997). The aim of this study was to compare stress levels and unmet service needs in informal carers of South Asian and white adults with learning disabilities.A sample of 742 informal carers was selected from the Leicestershire Learning Disability Register. Data on carers' and subjects' demographic details, stress levels and unmet service needs were analysed and compared using chi‐square tests and logistic regression analyses. Substantial differences were observed between the two groups. Carers of South Asian adults with learning disabilities reported significantly higher levels of care provision and unmet needs. Major stress was reported in 23% of carers. This was more common in carers with poor health, in those caring for younger adults, carers of adults with psychological symptoms, and in those with an expressed need for moral support or respite care.Stress is common among informal carers of adults with learning disabilities and inequalities, in reported care given and unmet needs, exist between carers of South Asian and white adults. Practitioners need to be aware of factors associated with stress when assessing carers in this population.
The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.
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.
This draft framework, which is being issued for consultation, sets out what those planning, delivering and monitoring local primary care and mental health services need to do to improve services for users experiencing mental illness and distress, and their relatives and carers, from Black and minority ethnic communities. There is clear evidence that these users and their relatives and carers experience inequitable services and outcomes. The document focuses on achieving improvements in three generic aspects of delivery (information, appropriate and responsive services and community engagement). These are termed the ‘building blocks’ as they are fundamental to delivering improvements in the outcomes and experiences of Black and minority ethnic users and their carers and relatives. The document then looks in detail at three specialist areas (suicide, pathways to care and acute inpatient care) of particular concern.
A society emerging from conflict, such as Northern Ireland, has an opportunity to tackle the full spectrum of discriminations affecting the society. The rights of citizens, the needs of carers and inequalities emerging from the history of conflict, are catered for. Access problems to health and social care services are still being experienced by hard to reach sections of our communities and health inequalities still persist. The strategy aims to change this consulting on disabled peoples’ access to health and social care services, and the development of better quality services.
This article focuses on the abuse of ageing caregiving women (55 years or older) by the spouses or parents for whom they provide care. Data presented were derived from a study of the dynamics of family caregiving focusing on Mexican American and Anglo caregiving dyads. Analysis focused on identifying correlates of abuse from a group of variables that represented the structure and context of caregiving. Data suggests the problem is not trivial and the interactional context of caregiving is the most promising aspect for explanation, intervention, and prevention.
This resource aims to provide practitioners working with children and families affected by ill health and disability with information, resources and links to help develop and implement best policy and practice for services to identify and support black and minority ethnic young carers and their families.
This site was originally funded by the Department of Health in order to provide an understanding of the needs of black and minority ethnic family carers and best practice support.
This qualitative pilot study investigated the interest of minority ethnic informal carers, with no previous experience of research, in engaging in carer-led research. Individual face-to-face interviews and focus groups were conducted to explore the understanding and attitudes carers hold to research alongside the motivators and de-motivators to their involvement in carer-led projects. The findings reveal that carers are interested in initiatives with a practical beneficial outcome for carers or those they look after. Black and minority ethnic carers identified interpreter and translation resources, gender sensitivity and flexibility around their involvement as major considerations. Carers perceptions of their transferable skills from personal or professional experiences to research were also closely linked to their willingness to engage in carer-led studies.
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.
Background: We aim to describe the health-related quality of life of informal carers and their experiences of primary care.
Methods: Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).
Results: Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.
Conclusions: Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.
The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving. Compared with those who cared for White dependants, those who cared for Black Caribbean dependants were more likely to be women (84% versus 46%, χ2 = 9.21, 1 d.f., asymptotic P = 0.002) and younger than 55 years of age (73% versus 37%, χ2 = 7.60, 1 d.f., asymptotic P = 0.006). The personal-care tasks which caregivers assisted their dependants with were similar, as were the informal resources they drew on. Many caregivers reported restrictions in their daily lives; this was more pronounced for those who cared for Black Caribbean dependants (χ2 = 6.40, 2 d.f., asymptotic P = 0.041, exact P = 0.039). Research is required to provide a qualitative narrative of the meaning caregivers from different communities ascribe to caring, and the formal and informal resources which they need to support them.
The Minority Ethnic Carers of Older People Project - Mecopp - provides respite care and advocacy for carers in Scotland. This article looks at how the project has expanded and why the model works.
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.
We evaluated a care-coordination project assisted by a screen-phone to support and educate caregivers. A total of 113 caregivers of home-dwelling veterans with dementia were recruited to the study: 72 were white, 32 were African American and nine were Hispanic. Caregivers were assessed for burden, depression, coping, quality of life, knowledge and satisfaction. None of the outcome measures changed significantly after twelve months. Forty care-recipient and caregiver dyads responded to the twelve-month telephone satisfaction survey. The respondents were more satisfied with the care-coordination (90 per cent) aspect of the programme than the education (77 per cent) or the monitoring (50 per cent). The pilot project suggests that care coordination aided by screen-phones may be a useful model for caregiver support in a managed-care setting. A systematic study is now required. 1 fig. 2 tables 20 refs.
A postal survey of forensic psychiatric facilities in England and Wales was undertaken to obtain information about the services provided for carers of in-patients within these services.
Forensic psychiatric services vary in the support and facilities provided for carers. Many do not comply with current legislation for carers. Most units informed carers of their rights to have an assessment, but only a minority provided facilities for carers from Black and minority ethnic backgrounds.
Forensic psychiatric services should meet standards for the involvement and support of carers in mental health settings, and comply with legislation for carers.
This assessment looks at the likely equality impact of possible reforms to the care and support system on people according to age, ethnicity, gender, race, religion and belief, and sexuality. It takes the issues of funding, increased personalisation, innovation, joined-up services and better provision of information on how the system works and what service users and carers are entitled to as proposed in the green paper 'Shaping the future of care together' and forecasts potential outcomes for the groups mentioned above.
The aim of this study was not just to understand older people’s experiences of care transitions, but also to conduct the research in a way that would help to embed the findings in health and social care policy and practice. Specifically, it aimed to: • Explore older people’s experiences of moving across service boundaries, examining access to services, and information, advice and support needs • Identify how the needs of particular groups of older people may differ from each other, and the different needs of service users and carers • Investigate these issues over time, to illuminate how previous transitions impact on current and future needs • Draw out policy and practice implications for the way in which services prepare and support older people and their carers for care transitions • Support, and share the learning from, implementation of project findings in four health and social care communities.
Carers of stroke survivors face significant burdens, and increased carer strain has negative implications for both the stroke survivor and the carer. In a prospective cohort of White British and British Indian stroke survivors and their carers, we report the incidence of carer strain in each ethnic group, describe patient and carer characteristics, and identify predictors of increased carer strain. Multidimensional outcome measures were used to assess the physical and cognitive function in stroke survivors at one month and 3-6 months from stroke onset. Levels of car strain were assessed at the same time points using the Carer Strain Index and the Hospital Anxiety and Depression Scale. Statistical significance for difference in patient and carer characteristics between White British and British Indian groups was assessed. There were no differences in levels of carer strain between the two ethnic groups. These findings will inform future research, and in turn, may help to guide population-targeted interventions aimed at reducing carer strain.
To more completely understand the challenges African American families face when combining employment commitments and informal caregiving responsibilities, the authors used data from a community sample of 119 African American elder-caregiver dyads. This article examines the nature of caregiving relationships and extent to which caregivers' employment statuses affect the hours of care provided. The authors concluded that employed caregivers do not provide significantly less care than do unemployed caregivers, elderly people with employed caregivers are no more likely than those with unemployed caregivers to use formal services, and unemployed caregivers may remain unemployed partly because of caregiving responsibilities.
This briefing paper draws attention to the experience of black and minority ethnic carers in the context of mainstream service provision and recent policy developments such as the National Carers Strategies, service user and carer involvement and the personalisation agenda. It acknowledges that marginalisation is often a consequence of lack of support for both carers and black and minority ethnic communities in health and social care. The paper highlights the diversity of carers from these ethnic backgrounds and the multifaceted impact of discrimination. Discussion focuses on the hidden cost of caring, the fact that black and minority ethnic carers are not 'hard to reach' but 'easy to overlook', whether appropriate provision should be through mainstream or separate black and minority ethnic services, service user and carer involvement in health and social care, and the fact that black and minority ethnic carers are not a homogeneous group.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.
Following the publication of the Good Practice Guide and report “We CareToo”, by the National Black Carers and Carer Workers Network and Afiya Trust, an audit of its impact was planned. This coincided with the announcement a new National Carers Strategy and the exercise was broadened into this review of the needs and experiences of Black and Minority Ethnic (BME) communities in Britain to complement the Government’s formal consultation. The report begins with some background, discussion of the concept of a “carer” within BME cultural communities and a review of recent developments of the policy and legislative context for caring. A further section outlines the race equality agenda and is followed by short essays from practitioners on the specific needs of a selection of care groups, identified by ‘condition’. The new data here is based on responses from 300 BME carers from across Britain, follow up visits to ‘good practice’ examples from an earlier study and the input of 36 voluntary and community organisations. Funding was the key issue in nearly all cases. Other topics raised included: the need for a strategic and ‘joined-up’ approach; information needs; the importance of the BME voluntary sector; and the need for training, information and support from ‘mainstream’ generic providers of carer support. The report concludes with a number of recommendations.
This is the report of a collaborative study between the Manchester Metropolitan University and the Bibini Centre for Young People to investigate the experiences, needs and access to services of black ‘young carers’ and their families. It is important to highlight that this study was situated within the social and political context of inequality, at a time when interest in the root causes of inequality seems to have been lost; instead, the focus is on ‘managing diversity’ (as if the problem lies in ‘difference’) and grappling with the consequences, not the causes, of social exclusion.
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.
This study explored the needs, aspirations and expectations of older people and family carers from a range of ethnic communities in Bradford, regarding both formal paid care provision and help from family, friends and neighbours. The focus was on the accessibility, acceptability, appropriateness and responsiveness of services. The study found cross-cultural similarities as well as cultural specificities in experiences and expectations.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.
A DVD in 10 languages to raise awareness of the need for short break carers from Black and minority ethnic communities. To inform potential carers about the rewards and challenges involved in providing short breaks to disabled children. To increase the take up of short break services by the families of disabled children of Black and minority ethnic communities. With English version narrated by Linford Christie.
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.
Describes the Abhay Partnership Project to deliver advocacy services for South Asian elders and their informal elder carers in west London. It also aims to change and improve how the 6 consortium partners, 3 host agencies and 9 community centres design and deliver services to such people.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.
This briefing provides an overview of the research literature on the barriers currently facing black and minority ethnic (BME) people in accessing dementia care services. It also looks at some of the ways in which services can become better at responding to the needs of (BME) people in their local area. The briefing begins by outlining the main issues and why it is important to address existing barriers. It then summarises the findings from the research, which cover: prevention, early intervention and diagnosis; life history and dementia; awareness and stigma; improving access to information; carers; workforce development and training; specialist and generic services. Implications for the main stakeholders are provided. The briefing is based primarily on UK research.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.
This article reviews the development of a social model of disability and considers whether or not it provides a helpful framework for dementia care. The social model has not yet fully included cognitive impairment, although considerable work has been carried out with regard to learning disability. By applying this model to dementia care, those who surround people with dementia can review the impact that they as 'non-demented' people have on others; can reconsider the value of hearing and responding to personal experiences; can reframe the focus to consider abilities instead of losses; and can better understand the impact of public policy. The article also considers the present shortcomings of a disability model in terms of how it relates to dementia care and concludes with some thoughts for future consideration. The article draws heavily on the findings of a research project conducted by Dementia Voice and the University of the West of England, Bristol, UK to consider the needs of two sub-groups of people with dementia – younger people (i.e. those under the age of 65) and those from minority ethnic groups.
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.
The project was set up to improve the support offered to carers of people with serious mental health problems through supportive and educational group workshops. It aimed to empower carers by improving their understanding of mental health services and care; and to develop a model of carer and mentoring support. From the 15 carers recruited, five left due to personal circumstances leaving a core group of 10. The group also contained a high proportion of black and minority ethnic carers. Although outcomes showed no significant shifts in thinking or change for carers, the workshops did help carers to develop resilience, working with health professionals, and empowering their advocacy role. Carers also valued the opportunity to listen and learn from each other and peer support developed throughout the programme.
There has been growing recognition of the important role that carers play in enabling vulnerable adults to remain in the community. Recent legislation has recognised the role of the family carers and encouraged the development of support services. Considerable research has been undertaken to identify the needs and the experiences of the carers in general but little specific attention has focused on older carers. This is despite the fact that they have their own unique needs which may have been hidden in previous research. This review commissioned by Help the Aged brings together exisiting evidence and supplements it with fresh analysis of the General Household Survey 1995 [GHS 1995] to draw out the particular needs of carers over the age of 60.
This report presents findings of a questionnaire-based survey of the financial position of carers in the UK conducted by the Carers National Association (CNA), the starting point of which was that government carers strategies published recently for England and Scotland have omitted to address carers' financial problems. The survey suggested that a large proportion of carers providing substantial care are faced with financial hardship. The report presents a detailed account of the effects of caring on income and finances, the diversity of needs according to the age, ethnic background, and benefit status of carers, and the changes which carers would perceive to be most beneficial. A concluding chapter sets out the CNA's recommendations for reducing poverty and social exclusion among carers, and promoting paid employment and recognition of the value of the work of carers. An appendix contains the questionnaire. References cited at the end of each chapter.
Optimal palliative care cannot be realized unless nurses have a full understanding of what the patient’s family is experiencing. There is a gap in nursing knowledge related to informal care and ethnic minorities. The aim of this retrospective qualitative exploratory study was to investigate the experiences of Bangladeshi informal carers living in the UK, associated with caring for a dying relative. Semi-structured interviews using an interpreter were carried out and patient notes were examined. Four categories emerged from the data: caring, support, communication, and home and family. In addition to the demands and stresses caused by their relative’s symptoms and the knowledge that they were dying, the Bangladeshi carers experienced communication barriers, isolation and anxieties regarding visas and housing – yet all were uncomplaining about their situation. Palliative care nurses working with Bangladeshi families need to be aware of the additional stresses that these families may experience and be able to offer strategies to enable them to cope with them.
This research looks at the experiences and preferences of low-income Caribbean, Pakistani and Somali people in balancing work and care responsibilities. It examines the particular challenges faced by these ethnic minority groups, and the challenges for employers and policy. It found that:
Objective: Optimising care for dementia patients and their informal carers is imperative in light of the impending dementia epidemic. An important aspect of care is accurate recognition and diagnosis of dementia. The aim of this review was to estimate family physicians' diagnostic accuracy at the different stages of dementia.
Methods: Pubmed, Embase, CINAHL, PsycINFO and the Cochrane Library were searched for articles comparing family physicians' ‘dementia’ and ‘cognitive impairment’ diagnoses in the primary care setting to reference standard dementia diagnoses.
Results: Data from six cross-sectional studies of moderate to reasonable methodological quality were extracted for the analysis. One study considered the accuracy of family physicians' recollecteddiagnoses, and three studies focussed on documented diagnoses. In these four studies, the sensitivity of family physicians' combined diagnostic categories of ‘cognitive impairment’ together with ‘dementia’ was 0.48–0.67 for mild dementia and 0.76–0.85 for moderate to severe dementia. The sensitivity of their diagnostic category ‘dementia’ alone was 0.14–0.33 for mild and 0.28–0.61 for moderate to severe dementia. Specificity was excellent for all severity stages in both comparisons.
Three studies examined the accuracy of family physicians' judgement of cognition during consultation. Compared with the studies on recollection and documentation, these studies reported higher sensitivity and lower specificity.
Conclusion: Many individuals with dementia are not recognised or not diagnosed as such; particularly mild dementia is under-diagnosed. Collaboration within primary care and education focussing both on knowledge and attitude are recommended to improve the accuracy of family physicians' dementia diagnosis. Copyright © 2011 John Wiley & Sons, Ltd.
This unique bi-lingual book records the reminiscences of 13 carers from Sheffield's Yemeni community.The stories were collected by noted local writer Debjani Chetterjee and translated by Abdul Razak Saleh.
Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty-seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi-structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific ‘incidents’, especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants’ understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.
The purpose of this article is to understand dementia caregiving and postcaregiving experience from the Korean-American family caregiver perspective. In this transcendental phenomenological study, I analyzed both in-depth interviews from 8 caregivers and field notes with the procedure of Moustakas' (1994) modification of the Van Kaam method. Five core themes characterized participants' experiences: understanding elderly patients with Alzheimer's by accepting it as a disease; self-defining and self-appraising of caregivers; caregiving as a family affair while examining transgenerational continuity of filial piety; returning caregiving to caregivers in turn as a mode of mourning; and reviewing dissatisfying experiences with the formal care system. Based on a small but relatively heterogeneous sample, this study advances the understanding of the underlying, dynamic context of Korean-American family dementia caregiving and addresses certain implications of geriatric social work intervention for postcaregivers.
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.
Over the last decade significant developments and debates have highlighted the disadvantages experienced by people who use mental health services.
This report provides a unique insight into how mental health advocacy has failed to reflect and address the specific needs of black and minority ethnic communities. It highlights persistent problems in mainstream services which position black service users on the margins with limited support; examines the reasons for the lack of advocacy development within the black voluntary sector; explores why advocacy is less accessible to black service users; and demonstrates examples of best practice.
The report concludes with recommendations and discusses the need to address a range of key issues such as access, language and communication, funding and implementation.
Describes a three-year project funded by a grant from the Bridge House Estate Trust Fund to fund an information and advice project for black and ethnic minority older people and their informal elder carers, aiming to improve access to Age Concern's information and advice services across London and working in all 33 boroughs - 11 per year.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.
Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.
This paper examines the relationship between care and mobility. It does so within the specific context of intra‐EU migration and the development of European citizenship. Citizenship of the Union bestows valuable social rights on mobile community nationals. Entitlement under the provisions is not, however, universal but conditional and privileges those in paid work. The paper considers the implications of this emphasis on paid work in two related respects: firstly, the impact on those people who move as part of the ‘male breadwinning family’ but are not engaged in paid work (the partners and families of workers); and secondly those community citizens whose migration decisions are shaped by the need to provide unpaid care to family members. Drawing on empirical research with migrant families, the paper concludes that the concept of work in Community law places those people who are not engaged in paid work (and family carers in particular) in a highly vulnerable and dependent position. Furthermore, the assumption of fixed and predictable dependency relationships within migrant families that underpins the law (and to some degree migration theory) fails to take account of the fluid and complex nature of dependency and caring relationships over the life‐course.
Little has been written on informal care of an older relative among minority ethnic groups in the UK. This paper examines the meanings of being an informal carer of an older family member for South Asian and African/Caribbean carers. The analysis presented here is based on qualitative interviews with 21 African/Caribbean and 15 South Asian carers. Drawing primarily on the notions of biographical continuity, biographical reinforcement and biographical disruption, the meanings of caring are examined. The findings indicate that the experience of informal care has many similarities to the experience of chronic illness. Carers generally described the experience of caring as an accepted part of their biography, talking about their caring relationship in terms of their pre-caring and a continuation of their previous relationship with the person being cared for and their roles within the family. However, the participants also described highly disruptive elements to this change in the relationships. The paper attempts to consider the relationship between individual experiences, cultural factors and macro-social structures.
'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.
Ealing, London: Francis English describes two new videos produced by Alzheimer’s Concern Ealing to support people with dementia and carers from ethnic minority groups
The material on this DVD reflects the views of a multi-ethnic group of carers and community members in Wolverhampton who meet regularly to share their experiences and hope for the future. Some issues for discussion are also suggested in the accompanying leaflet, including access to appropriate services, improving communication and better recognition of the role of carers.
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.
This article investigates the prevalence of unpaid caregiving by local authority district in England and Wales, using data from a new question on caregiving in the 2001 Census. We also examine geographic variation in the characteristics of unpaid care providers including health status, socio-economic status and ethnicity. Results show clear geographic variations in caregiving. The proportion of adults providing more than 20 hours of care per week ranged from less than 2 per cent to nearly 8 per cent. The highest proportions of caregivers were found in areas with higher than average levels of deprivation and long-term illness. Carers in such areas were themselves more likely to be in poor health. There are also clear variations in caregiving propensity by ethnic group.
Background: Depression in informal caregivers of persons with dementia is a major, costly and growing problem. However, it is not yet clear which caregivers are at increased risk of developing depression. With this knowledge preventive strategies could focus on these groups to maximize health gain and minimize effort.
Methods: The onset of clinically relevant depression was measured with the Center for Epidemiologic Studies - Depression Scale in 725 caregivers who were not depressed at baseline and who were providing care for a relative with dementia. Caregivers were followed over 18 months. The indices calculated to identify the most important risk indicators were: odds ratio, attributable fraction, exposure rate and number needing to be treated.
Results: The following significant indicators of depression onset were identified: increased initial depressive symptoms, poor self-rated health status and white or Hispanic race/ethnicity. The incidence of depression would decrease by 72.3% (attributive fraction) if these risk indicators together are targeted by a completely effective intervention. Race/ethnicity was not a significant predictor if caregivers of patients who died or were institutionalized were left out of the analyses.
Conclusion: Detection of only a few characteristics makes it possible to identify high-risk groups in an efficient way. Focusing on these easy-to-assess characteristics might contribute to a cost-effective prevention of depression in caregivers.
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.
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.
The paper reports on the development and piloting of the Social Inclusion Interview Schedule (SIIS). This uses pictures to explore social networks and feelings of social inclusion. The background, conceptual framework and development of the interview schedule are discussed and interim findings are highlighted. The challenge of not just identifying the constituents of a social network but also attributing some measure of intensity to the relationships and activities identified will be considered. The study site is Bradford in the UK and the study population are young people with learning disabilities and their carers. There is a specific focus on people from the South Asian community resident in the city.
3rd in a series of 5 articles on informal carers in the UK, focusing on carers who may be more isolated.
Although most caregivers are, by the nature of care giving, hidden, some caregivers are perhaps more noticeable than others. This suggests that some caregivers are less noticeable, more hidden. This third article in this series on caregivers will focus on the ‘more hidden’ of the caregivers: male caregivers, young caregivers, BAME caregivers, LGBT caregivers, rural caregivers and caregivers who are elderly or have a disability themselves. Some suggestions will be offered that may help healthcare assistants (HCAs) and nurses to support these caregiver groups.
Objective. The aim of the present study was to investigate the economic validity of using a psychological intervention in the management of sickle cell disease (SCD). Thomas et al . ( Br J Health Psychol 1999; 4: 209-29) concluded that cognitive-behaviour therapy (CBT) appears to be immediately effective for the management of SCD pain in terms of reducing psychological distress pain as well as improving coping. Method. The costs of management of SCD were evaluated using a societal viewpoint. This approach includes health and social services as well as costs privately borne by informal carers, but it did not include the economic loss due to patients' foregone earnings. Cost profiles were constructed for each patient taking account of cost generating events 12 months before and 12 months after CBT. Results. The hypothesis of the present study, stating that CBT is economically efficient, was confirmed. However, analysis of longitudinal data suggests that CBT is most cost-effective during the first 6 months after the intervention. Conclusion. The present findings suggest the need for CBT to be integrated into the normal package of care available for all patients with SCD. The clinical implication is that CBT should be routinely offered to patients on a 6-monthly basis.
This report involved qualitative and quantitative research with low-income Caribbean, Pakistani and Somali people regarding their experiences and preferences in balancing work and care. Existing policy on childcare and caring doesn’t appear to respond effectively to this challenge, while employers need to do more to enable well-paid flexible working and eliminate discrimination in recruitment and progression.
The report finds that: • discrimination is one of the key barriers preventing low-income ethnic minority people from balancing work and care; • existing good practice on reducing discrimination must be strengthened and expanded across public and private sector employers; • various benefits changes are likely to make it more difficult for many lowincome ethnic minorities to balance work and care; • there are not generic attitudes towards ‘caring’ within or across ethnic groups; and • gendered expectations compromise higher labour market participation among women, while men are less likely to fulfil caring responsibilities.
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.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.
Objective: to undertake a systematic literature review of risk factors for abuse in community-dwelling elders, as a first step towards exploring the clinical utility of a risk factor framework. Search strategy and selection criteria: a search was undertaken using the MEDLINE, CINAHL, EMBASE and PsycINFO databases for articles published in English up to March 2011, to identify original studies with statistically significant risk factors for abuse in community-dwelling elders. Studies concerning self-neglect and persons aged under 55 were excluded. Results: forty-nine studies met the inclusion criteria, with 13 risk factors being reproducible across a range of settings in high-quality studies. These concerned the elder person (cognitive impairment, behavioural problems, psychiatric illness or psychological problems, functional dependency, poor physical health or frailty, low income or wealth, trauma or past abuse and ethnicity), perpetrator (caregiver burden or stress, and psychiatric illness or psychological problems), relationship (family disharmony, poor or conflictual relationships) and environment (low social support and living with others except for financial abuse). Conclusions: current evidence supports the multifactorial aetiology of elder abuse involving risk factors within the elder person, perpetrator, relationship and environment.
This study utilizes a stress and coping framework which includes cognitive appraisal, personal and environmental resources, coping and stress to examine factors related to African-American caregivers’ breast cancer screenings, including mammograms, clinical examinations and self-examinations. Using data from the Black Rural and Urban Caregivers Mental Health and Functioning Study, we performed separate logistic regressions for each type of breast cancer screening. Results reveal that having a regular doctor checkup (coping), care recipients having a cancer diagnosis (cognitive appraisal, and living in urban areas (environment resources) are associated with receiving a mammogram. Having greater income, having at least a high school degree (both personal resources) and having a regular doctor checkup (coping) are associated with receiving a clinical examination. Increased caregiver strain (stress), being 40 years old or older, social support (coping) and living in rural areas are associated with performing a self-examination. Targeting African-American caregivers, particularly in rural areas, for increased education on the importance of receiving breast cancer screenings is crucial to addressing health disparities. Making resources available, encouraging caregivers to get a clinical examination and a mammogram and directing public education toward caregivers are important points of intervention.
The Equality Bill will strengthen equality law in England, Wales and Scotland by: introducing a new public sector duty to consider reducing socioeconomic inequalities; putting a new Equality Duty on public bodies; using public procurement to improve equality; banning age discrimination outside the workplace; introducing gender pay and equality reports; extending the scope to use positive action; strengthening the powers of employment tribunals; protecting carers from discrimination; protecting breastfeeding mothers; banning discrimination in private members’ clubs; and strengthening protection from discrimination for disabled people. This document explains how the Bill, supported by other action being taken by the Government and partners, will make Britain a fairer place to live and work now and in the future.
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.
The experience of older age should be a positive one. But whilst many older people enjoy the chance for more leisure, learning new things, or spending time with friends and family, others experience isolation and exclusion. The consultation highlighted three key ways in which respondents say provision needs to improve if older people are to enjoy a better quality of life: joined up services are key; intervening early is important, and investment in low level prevention can reduce costlier interventions later; and older people generally know what they need and want, and they should be involved in the design and – where practicable – the delivery of services. This report is split into three sections: a summary of the issues and challenges; social issues from crime to housing, from transport to employment; and the specific needs of carers, those from minority ethnic communities, and at the way in which support for excluded older people is funded.
Objective: This study explores the impact that cancer-related financial hardship/worries can have on family life.
Methods: Forty patients (19 male and 21 female) and 17 carers participated in a qualitative study, which drew on certain elements of grounded theory methods. Participants were 18 years or older and were accessed through a regional cancer centre, an acute National Health Service trust, a support group and the Macmillan Benefits Helpline. Interviews were transcribed verbatim and analysed thematically with the aid of nvivo 7 (QSR International, Cambridge, MA, USA).
Results: Many participants said that prior to experiencing cancer, they had never thought about its effects on finances. The early part of the cancer journey was characterised by a need to be positive about the future, limited discussion about money within families and a lack of action in relation to finances. Many participants, especially those of working age, described cancer-related financial worries and difficulties that had impacted on family lifestyle, roles and relationships. Consequences included house repossession, bankruptcy, loss of independence and relationship breakdown.
Conclusions: Health and social care professionals have a role in prompting people affected by cancer to take stock of their finances early in the cancer trajectory, in order to avert knock-on effects. An approach that combines hope with proactivity is needed. More work into the long-term effects of financial difficulties/worries and specific financial issues that affect people from Black and minority ethnic backgrounds is needed. Copyright © 2011 John Wiley & Sons, Ltd.
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.
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.
Reports on the development of a joint mental health strategy for older people in a central London Borough. The project brought together clinicians and practitioners from a variety of settings, the voluntary sector, and users and carers. The aim of the project was to develop a shared philosophy of care based on promoting independence and from this to identify the components of a spectrum of care that would meet the wide range of needs of elders with mental ill health. The borough had high levels of deprivation, unemployment and poor housing. In addition there was a rich ethnic diversity within the borough.
Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.
Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.
Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.
Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.
Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers’ emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.
Abuse in care relationships is an increasing concern in social policy and service provision. Attention has been drawn to the abuse of cared-for people in their own homes, the abuse of carers by family members and the abuse of people in institutional settings. Drawing on qualitative research with carers/carees from South Asian and African-Caribbean backgrounds, this paper explores a different conceptualization of abuse which moves away from an interpersonal understanding, to one that recognizes structural inequalities as a form of ‘institutional’ abuse of carers and those who receive care. This reconceptualization of abuse gives particular attention to forms of racism and discrimination in the provision of services to minoritized carers/cared-for people. It therefore makes significant contributions to discussions of caring and race equality in the health and social care fields.
This study used an adaptation of the stress and appraisal model to examine the mediating effects of religiosity on caregiving strain and gain with an ethnically diverse sample of 384 Alzheimer's disease caregivers in the United States. While the regression analysis indicated that religiosity did not mediate the stress of providing care for the entire sample, there were significant differences in the use of religiosity depending on the ethnicity (African American, Hispanic, and White non-Hispanic) of the caregiver, as well as significant differences between the three cohorts in the levels of caregiving strain (depression) and gain (self-acceptance). Implications for the use of religiosity as a protective factor for AD caregivers are discussed.
In line with the Carers and Disabled Children Act (2000), the DH has commissioned a series of projects to help in developing a comprehensive learning disability strategy. This report presents findings of a study undertaken by the Family Carers sub-group in 2000, involving a literature review and consultations with family carers in England, aimed at highlighting the experiences and perspectives of family carers, especially carers of adults with learning disability. The report identifies the concerns and needs of family carers and groups requiring targeted support, and goes on to discuss the rights of family carers and people with learning disability in relation to the government's strategic objectives. A series of recommendations are presented for improving services and developing partnership working at local level, and for national policy support for change. An annex lists members of the Family Carers sub-group.
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]
A project worker who identified gaps in services for ethnic minority carers of people with mental health difficulties provided the catalyst for Birmingham's Pamela Project, which won a Community Care Award. Anabel Unity Sale reports. [Introduction]
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.
Objectives: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. Data sources: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997–October 2003) was also hand-searched. Study selection: Systematic search for studies, reports and policy papers written in English. Data extraction: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. Results: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. Conclusions: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.
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.
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.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North East region. In 2001 there were 275,813 carers in the North East region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North East region.
Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.
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.
Aims. This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.
Background. Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention.
Design. Systematic review.
Methods. Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes.
Results. Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination.
Conclusion. Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills.
Relevance to clinical practice. Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.
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.
This examination of the extent to which carers services in Wales are accessible to Black and Minority Ethnic (BME) carers is located within the overall 'Caring about Carers - a Strategy for Carers In Wales (Implementation Plan)', a project initiated by the Welsh Assembly Government. Supported also by the Welsh Assembly Government, and carried out within the auspices of AWEMA (All Wales Ethnic Minority Association) as a BME Carers project, this study sets out to explore the needs of BME carers in Wales and the extent to which they felt that their needs were being recognised and addressed by mainstream services.
Within a study of the use of carer assessment forms, Asian carers were given the opportunity to describe and comment on their perceptions and experiences of community care assessment and support. Although their confidence in community care workers was not exclusively related to ethnicity, they relied a great deal on semi-informal contacts with minority ethnic workers through their own local communities. The concept of ‘friendship’ with professionals was important to many Asian carers. In common with the findings of other carer studies, many Asian carers were uncertain about their experience of formal assessment and unclear about their entitlements and availability of community care support. ‘Outreach’ contact and ‘befriending’ support was greatly appreciated. Day-care and sitting support were seen as a priority for formal services. Apart from contact with general practitioners, there was limited awareness or experience of community health-care support. Most of these Asian carers were involved with carer support groups. They spoke of the benefits in terms of social interaction and mutual support, counteracting feelings of isolation, and access to information and formal support.
Improving responsiveness to the needs of older people from minority ethnic communities has been emphasised as a goal in England since the publication of the National Service Framework for Older People in 2001. Despite this, people from minority ethnic groups consistently give poorer ratings of their health services than ‘majority’ populations, both in England and across many other health-care systems. Language barriers have been shown to play a particularly important role, and appear to be a stronger predictor of perceived quality of care than ethnic origin per se. This paper reports findings from a larger study exploring older people's experiences of care transitions, focusing on the findings from one case study area which explored the hospital and discharge experiences of older people from minority ethnic communities. A participatory approach was adopted, with older people from the local area collaborating in the design, delivery and analysis of the research as ‘co-researchers’. Twenty-four in-depth narrative interviews were carried out with people who had experienced a recent hospital stay as a patient or a family member providing care and support. Our findings show that many aspects of the hospital experience, including the desire for personalised and humanistic approaches to care, are important to older people irrespective of ethnic background. However, older people from minority ethnic communities can also face language and cultural barriers which negatively affect the quality and experience of care. People who had limited English proficiency struggled to understand, communicate and participate in their care. Where professional services were not available or requested, interpreting was provided informally by other patients, family members, hospital staff in clinical and domestic roles, or not at all. We conclude that targeted strategies are required to ensure appropriate and effective hospital services for a multicultural population.
This article outlines the findings and general implications of Mental Health Foundation research into the needs of older Asians with dementia and their carers. The project was carried out in an area with an Asian majority population in North West Kent. The focus is on the identification of need and on factors which block access to care and support. There are recommendations for practitioners and commissioners about raising awareness, service development and training.
Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994–November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of the key details of each study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support, was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients’ homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care settings.
The employment rates of both disabled people and those from minority ethnic groups are subject to substantial UK policy attention. In this paper we set out to enhance understanding of the relationship with the labour market for those living with long-term illness and their family members. We explore the role of family caring responsibilities and ethnicity in shaping patterns of employment participation. We do this by investigating the experiences of those from four different ethnic groups and using a mixed qualitative and quantitative approach.
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.
The objective of this study was to explore awareness, recognition and understanding of dementia symptoms in families of South Asian and African/Caribbean descent in the UK. In-depth, semistructured interviews were carried out with South Asian and African/Caribbean carers. Interview transcripts were analysed by coding the data into themes and investigating links between them, using the constant comparison approach of grounded theory. Thirty carers of a person with dementia of South Asian and African/Caribbean heritage were interviewed. Maximum variation sampling was used to include carers with a broad range of socio-demographic characteristics. Most participants were aware of the condition "dementia", but used different terms to describe the disorder. Many, however, had not heard of the condition before their relative developed it, suggesting general awareness of dementia is low. Difficulties can arise in the caring relationship due to a lack of understanding of the condition--in particular when family members place blame for the symptoms on the person with dementia. Conclusions of the study are that knowledge of dementia is limited, in terms of awareness of the condition as well as understanding of the causes. This research highlights the importance of raising dementia awareness and emphasises the importance of the provision of clear and understandable information, from health and social service providers.
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.
The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the London region. In 2001 there were 606,861 carers in London, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the London region.
Little is known about those employed to support family carers of disabled people or those with longterm care needs. The term ‘carer’ is used in England to refer to family members and others who provide unpaid regular and substantial support to adults with disabilities, including older people and others unable to live independently. Among the wider social care workforce some staff are employed to provide support for these carers, but little is known about the composition and characteristics of this group of staff. The findings reported in this article are derived from quantitative secondary analysis of the National Minimum Data Set for Social Care (NMDS-SC; n = 499 034), which collects data from social care employers and reports to Skills for Care. This data set includes information about the characteristics of the workforce employed to support carers and the organisations that employ them to do so. Our analysis showed that this support workforce is mostly female, with a large number of part-time employees who are based in organisations with significantly higher turnover and vacancy rates than other organisations which provide social care. Staff who support family carers appear to be better qualified and to have longer experience within the care sector than other social care workers. From these findings we conclude that this support workforce may be affected by staff shortages themselves, and that high staff turnover rates may undermine the continuity of support given to family carers, leading to problems for existing staff. We argue that developing the potential of social care staff to support family carers requires specific attention from social care employers and policy makers.