Background: The challenges of living with and taking care of a patient with schizophrenia can lead to positive changes depending on the experiences and reactions of family caregivers. Such changes may directly affect the family performance and the patient’s recovery stage. Aims: Present study aimed to explain the positive experiences reported by family caregivers of patients with schizophrenia. Methods: The present study is a qualitative study of content analysis. Data were collected using semi-structured and in-depth interviews with 15 family caregivers of patients with schizophrenia referring to one of the psychiatric hospitals in Zahedan, Southeast part of Iran. Purposive sampling method was applied and data analysis was conducted using conventional content analysis proposed by Graneheim and Lundman. Results: Data analysis created a theme entitled “family achievements in struggling with schizophrenia”. This theme included four categories including Developing positive personality traits in family members, Strengthening family ties, developing insight into the life, and social mobility. Conclusions: The results provided insights that the experience of taking care of patients with schizophrenia led to positive consequences for family caregivers. Thus, it is recommended that psychiatrists or consultants help families rely on positive experiences and share these experiences with families with a newly-suffered patient.
Background: Previous research suggests caregivers of individuals with eating disorders (EDs) may attempt to reduce family strain by engaging in accommodation and enabling behaviors to avoid conflict or alleviate stress of the affected individual. Moreover, families often reorganize life around the ED, reinforcing ED behaviors and exacerbating family dysfunction and caregiver distress. However, limited research has examined how accommodation relates to caregivers' distress, family functioning, and treatment outcomes. The current study provides an initial evaluation of these associations among treatment-seeking individuals with EDs and their family members. Method: Forty family members of individuals receiving cognitive behavioral therapy for EDs in a residential treatment soetting completed the Accommodation and Enabling Scale for Eating Disorders (AESED) and measures of anxiety (Patient-Reported Outcomes Measurement Information System anxiety scale) and family functioning (Family Assessment Device; FAD) at the time of their family member's treatment admission. Results: Eighteen patients completed the Eating Disorder Examination-Questionnaire (EDE-Q) at admission and discharge. AESED scores were positively associated with family member anxiety, FAD roles, FAD behavioral control, and higher patient EDE-Q global scores at discharge. Conclusions: Findings provide preliminary evidence that greater family accommodation not only relates to poorer family functioning, but uniquely relates to worse ED treatment outcome.
Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.
Aims: The current study aimed to investigate the impact of carer-related modifiable factors (i.e., knowledge about dementia, psychological inflexibility, self-compassion and hours of support from other family members) on quality of life (QoL) among family carers. Methods: A multiple regression analysis was conducted with QoL as a dependent variable. All factors were entered into the model simultaneously as independent variables. Ninety-one family carers with a mean age of 69.5 years old were assessed. Results: Participants were primarily female family members looking after a person with severe Alzheimer's disease. The model's R2 was 24%. The results demonstrated that psychological inflexibility was the only significant independent variable predicting QoL (β = −0.46, p = 0.00, 95% CI: −0.71 to −0.20), and higher psychological inflexibility was associated with worse QoL. Conclusions: These findings suggest that targeting carer's psychological inflexibility through psychological interventions such as Acceptance and Commitment Therapy may be particularly important in promoting QoL among family carers of people with dementia.
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: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.
Background: Delivery of community-based end-of-life care for patients and family members has been recognized as an important public health care approach. Despite differences in different healthcare settings and the significance of a person-centered approach, little research has investigated facilitators of community-based end-of-life care from the perspective of service recipients. In particular, there has been limited exploration of strategies to ensure positive outcomes at an operational level. Aim: To explore factors facilitating positive end-of-life care provision in community-based settings and how these are achieved in practice, from the perspectives of patients and family caregivers. Design: A qualitative cross-sectional descriptive study was undertaken through semi-structured interviews with patients and family caregivers subjected to thematic analysis. Setting/participants: Ten patients and 16 family caregivers were recruited from an end-of-life community care program provided by four non-governmental organizations in Hong Kong. Results: Seven core themes were identified: positive emotions about the relationship, positive appraisals of the relationship, care through inquiring about recipients’ circumstances, instrumentality of care (i.e. information, coaching on care, practical help, psychological support, multiple activities), comprehensiveness of care (i.e. diversity, post-death care, family-level wellbeing), structure of care (i.e. timely follow-up, well-developed system), and qualities of workers. Conclusions: Improvement in service quality might be achieved through alternating the perceptions or emotional reactions of care recipients toward care providers and increased use of sensitive inquiry. Comprehensive care and positive outcomes might be facilitated by addressing the dualities of care by providing diverse choices in pre-death and post-death care.
Introduction: An association can be found between patient with psychosis and perpetrating acts of violence. So, the caregiving role can impact negatively on psychosis carer psychological health and wellbeing. Objectives: The aim of this study was to identify the factors associated with post-traumatic stress disorder (PTSD) in family caregivers of psychotic patients following exposure to aggression. Methods: This cross-sectional study was carried out involving 95 family caregivers of psychotic patients followed in psychiatry. Data were gathered from caregivers about their experiences in providing care. Sociodemographic and clinical data of patients were collected from medical records.We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: The caregivers were male in 51.6% and with low educational level in 46.3% of cases. A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD. Decreased contact with patient (p=0.01), male gender (p=0.00), older age (p=0.00), living far from patient (p=0.00), parent relationship of caregivers (p=0.00), diagnosis of schizophrenia or schizoaffective disorder (p=0.00) and poor adherence to treatment (p=0.00) in affected relatives were associated with the presence of PTSD following exposure to moderate to severe aggression. Conclusions: These findings highlight the need for interventions to promote family psychoeducation and to provide psychosocial support for caregivers of patients in order to prevent the traumatic impact of violence on them.
Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels.
Background: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. Methods: Two hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. Results: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. Conclusion: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.
Objective: This study aims to investigate the burden of family caregivers of patients with schizophrenia, and its influencing factors. Methods: A total of 105 patients with schizophrenia and their caregivers were investigated using the positive and negative symptom scale (PANSS) and family burden scale of disease (FBS). Results: There was a strong correlation between the patient's recovery and family burden, especially between positive and negative symptoms and family financial burden, family daily activities, family recreational activities, and family relationship. Conclusion: There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities, and family relationship. Medical staff should pay attention to the psychological characteristics of patients and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities and family relationship. Medical staff should pay attention to the psychological characteristics of patients, and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients.
Introduction: Family caregivers of psychotic patients are exposed to violence and stress. However, associated psychological outcomes are poorly characterized in this population. Objectives: The aim of this study was to clarify the relationship between violence directed towards caregivers of patients with psychosis and developing post-traumatic stress disorder (PTSD). Methods: Participants were family caregivers of psychotic patients (n=95). They completed a questionnaire assessing sociodemographic characteristics. Sociodemographic and clinical data of patients were collected from medical records. We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. Decreased contact with patient (p=0.00), male gender (p=0.00), older age (p=0.00) and parent relationship (p=0.01) of caregivers, diagnosis of schizophrenia or schizoaffective disorder (p=0,00) and poor adherence to treatment (p=0,00) in affected relatives were associated with experiences of moderate–severe aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD which correlated with the level of aggression (p=0.00). Conclusions: Our findings suggest that a large proportion of family caregivers of patient-initiated violence in psychosis reported experiencing a great distress and a high level of PTSD symptomatology. So, more attention should be paid to the support needs of caregivers who are faced with potentially life threatening aggressive behaviour by psychotic family members.
Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.
Background: When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes. Objectives: To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety. Methods: Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy. Results: Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life. Conclusion: Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.
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.
Objectives: Carer’s self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers’ BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers. Design: Qualitative study using thematic framework method. Setting: Community setting in Hong Kong. Participants: 16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement. Results: Six overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers’ distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers’ self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Conclusions: Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.
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: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. Methods: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient‐caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor‐partner interdependence framework was used for analysis. Results: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, –0.56; 95% CI, –1.07 to –0.05) or their caregivers (AME, –0.58; 95% CI, –0.97 to –0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, –1.62; 95% CI, –2.02 to –1.23) and experienced financial difficulties (AME, –2.31; 95% CI, –3.77 to –0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, –3.29; 95% CI, –6.45 to –0.14). Conclusions: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners. Reports from patients with advanced cancer and their caregivers about physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. Addressing the well‐being of both members of the dyad and reducing caregivers' uncertainty regarding treatment goals may improve reported experiences with health care providers.
Background: Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Methods: Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Findings: The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. The 5 themes provide 6 constructs for independent intervention. Conclusions: Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.
Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design: Between October 2018 and March 2020, we conducted 11 in-depth semi-structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life. Data Analysis: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.
Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.
Introduction: In the literature, service users and informal caregivers have been critical towards psychiatric inpatient care. However, little is known about their fears related to hospital care. Objectives: We describe service users’ and informal caregivers’ experiences of fear in psychiatric hospital settings. Methods: The data were collected from seven mental health associations located in six Finnish cities. Focus group interviews (f=8) were conducted (2015–2016) with service users (n=20) and informal caregivers (n=15), and were guided to focus on violence and challenging situations in psychiatric care. In a secondary analysis, experiences of fear were extracted from the transcriptions and analyzed using inductive content analysis. Results: Both groups’ experiences of fear focused on themes related to staff, treatment and fellow patients. Additionally, service users had experiences of fear related to the hospital environment. Fears related to staff involved intimidating personnel using force or acting in threatening ways. Participants also described staff seemingly being afraid of patients and care givers. Three types of fears related to treatment were described: fear of not being admitted to hospital even if needed, fear of being admitted to hospital, and fear of coercive methods used in care. Fear of fellow patients involved being afraid of aggressive, unpredictable behaviors, which could cause, e.g., a lack of sleep at night for service users. Fears related to the environment itself were also discussed. Conclusions: Being hospitalized can be a difficult experience for service users and informal caregivers. These results can help psychiatric healthcare staff acknowledge areas in care that may potentially cause feelings of fear.
Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.
Background: There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. Methods: A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). Results: The review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences. Conclusions: The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.
Background: Family caregivers of patients with COVID-19 face many challenges that affect their physical and mental health. Aim: The aim of the present study was to explore experiences of family caregivers of patients with COVID-19. Methods: This phenomenological study was performed based on 13 family caregivers who had experience in home caring for patients with COVID-19. Data were collected through purposive sampling with in-depth semi-structured interviews. The Colaizzi's 7-step method was used to determine themes. The MAXQDA10 software was used to manage qualitative data analysis. Results: Thirteen family caregivers participated. Five main themes describe family caregivers' experiences of caring for patients with COVID-19: nature of the disease; unmet needs; unpleasant physical, psychological, and social experiences; care facilitators and positive experiences. Conclusion: Information and financial support for COVID-19 should be provided to family caregivers. Also, community members should embrace patients and family caregivers and reinforce the positive experiences of caregivers.
Background: Social stigma is the most common and challenging burden of care on the family of people with Borderline Personality Disorder (BPD) In Iran, despite the cultural and social influences, this issue has been less studied. Therefore, present study was conducted to determine the lived experiences of caregivers of patients with BPD of social stigma. Materials and Methods: This qualitative study was performed at Ibn Sina hospital in Mashhad, Iran from 2017 to 2019. Participants were selected by purposive and snowball sampling method. Data were collected through semi-structured interviews. Data saturation was achieved after 16 interviews. Finally, the data were analyzed by the method proposed by Diekelmann (1989). Results: In data analysis, one main theme and two sub-themes emerged. The main themes include Black shadow. Two sub-themes consisted of society dagger and secrecy. The sub-theme of society dagger included the two common meanings (inner turmoil in response to the stigma of others and weakening of family status among relatives and acquaintances). The sub-theme of secrecy comprised of the three common meanings (concealment of disease, hide hospitalization, and seclusion). Conclusions: An understanding of the experience of family stigma can lead to the development of supportive strategies to manage this problem among caregivers of patients with BPD. Nurses can support caregivers by offering them opportunities to discuss how stigma is disrupting their caregiving roles. They can also support the caregivers in negotiating the experienced social and emotional distress and when necessary, refer them to the other members of healthcare teams.
Objective: The objective of the review was to synthesize research studies that reported on the experiences and needs of families with a relative in an adult intensive care unit. Introduction: Having a relative in an intensive care unit has been reported to be a time of turmoil, stress, and disruption to the lives of family members. Primary research studies suggest such a crisis or even a planned intensive care unit admission can have not only emotional, physical, and psychological impact, but can also affect family member roles and function. A deeper understanding of the overall experience may assist intensive care unit staff to address specific family needs. Inclusion criteria: This review included qualitative studies of any design that described and explored the experiences and needs of family members with a relative admitted to an adult intensive care unit. Methods: The methods for the review followed the JBI meta-aggregation approach for synthesizing qualitative data. MEDLINE (EBSCO), CINAHL (EBSCO), PsycINFO (EBSCO), Embase (Embase.com) and Web of Science Core Collection (Clarivate Analytics) databases were searched for published studies. ProQuest Dissertations and Theses database (Ovid) was searched for unpublished studies. Studies published from 2010 to November 2019 in the English language were selected for possible inclusion in the review. Results: From 7208 citations, 20 studies were agreed upon for inclusion in the review. From these studies, 112 findings were extracted and synthesized into 12 categories. Four synthesized findings were compiled by aggregating the categories. Broadly, these synthesized findings related to: psychosocial health, proximity, information needs, and the intensive care unit environment. Conclusions: Being a relative of a patient in an intensive care unit is a complex, emotional, and individual experience that can have physical, psychological, and emotional impact. The synthesized findings from this review can be used to support family-centered care practices in adult intensive care units, particularly in regard to information provision, visiting practices, and supportive care. Systematic review registration number: PROSPERO CRD42016053300
Introduction: At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients’ and caregivers’ specific need for and utilisation of psychosocial support for existential distress. Methods: This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress. Discussion: This study will provide comprehensive knowledge about patients’ and caregivers’ existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively. Ethics and dissemination: The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.
Background: The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. Methods: A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Results: Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Conclusions: Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.
Background: Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda. Method: A mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews. Results: Five categories were identified in the caregivers’ experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying. Conclusions: Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.
Background: Obesity is a major health problem worldwide. Today, bariatric surgery is considered as the last option and most effective treatment for severe obesity (BMI ≥40 kg/m2 or BMI ≥35 kg/m2 with metabolic conditions). Aims: We aimed to evaluate the medium-term effect (>36 months) of bariatric surgery and assess postbariatric nutritional and lifestyle management among Lebanese patients who underwent bariatric surgeries in Jbeil and Keserwan hospitals. Methods: This study is a quantitative case-control study. The case group includes a couple of patients who have undergone sleeve or bypass surgery 6 months ago and above, along with the main family caregivers. The control group constitutes a couple of obese patients with BMI ≥30 kg/m2 who did not proceed to any surgical intervention with their main caregivers. The final samples consisted of 53 cases and caregivers and 50 controls and caregivers. The assessment was made by an online questionnaire. Results: Compared to obese patients, bariatric patients were less likely to have high energy intake (54% versus 34%, P value 0.012). Moreover, 35.8% of the caregivers of bariatric patients had a low physical activity level compared to those of the control group who had a lower level (70%). In addition, cases’ main caregivers (75.5%) had much higher quality of life compared to the cases (56.6%), and also, higher quality of life was seen among the case’s main caregivers (75%) compared to the controls (72%). Conclusion: In Jbeil and Keserwan regions of Lebanon, there is a lack of postbariatric nutritional and lifestyle management leading to less desirable outcomes in the medium to long term. A set of recommendations are developed based on this study.
Introduction: Raising a child with neurodevelopmental disorder is very challenging. Furthermore COVID-19 pandemic can increase stress levels especially among people that suffer from mental health disorders. On of the high risks group are children with neurodevelopmental disorders. Studies show that these difficult, challenging times have had a negative impact on most families, which have a child with neurodevelopmental disorders. Objectives: Evaluation of depression symptoms among caregivers of children that take therapy in the National Center for Children Rehabilitation and Treatment (NCCRT) during COVID-19 pandemic. Methods: The study was conducted during a two-month period March-April 2020. The sample involved 110 individuals, relatives, of children that were taking educative and rehabilitation therapy in NCCRT during last year, ambulatory or inpatients. Data were collected by clinical records and phone interviews with children’s caregiver. Instrument we used were: Demographic inventory and Hamilton Anxiety Rating Scale for anxiety symptom evaluation. All data were statistically analyzed through excel. Results: Most of individual interviewed, whom are responsible for children wellbeing were their parents, 69% of them. 56% of individuals were among 31-45 years old and 92% of them were women. Depression symptoms were slightly present. We noticed that depressive symptomatology was a bit worse in caregivers in urban areas compared with ones in rural areas. Conclusions: It is necessary supporting with special attention caregivers whom have depressive symptoms. Yet has to be evaluated the connection, if it’s present, between parents with depressive symptoms and children progress, for ones that are being supported with development therapy.
Background: The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective: To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design: Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results: Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion: FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution: Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.
Introduction: Caregivers of youth with mental health (MH) challenges are often faced with complex problems in relation to caring for their youth. Family Connections™ (FC) is a 12‐week skills training program for families of individuals with MH challenges, developed originally for Borderline Personality Disorder. Research is needed to examine the effectiveness of FC for caregivers of youth with diverse MH challenges. Objective: To examine the effectiveness of FC for caregivers of youth with MH challenges. Methods: A total of 94 caregivers of youth with MH challenges participated in FC, across three sites in Ontario, Canada. Assessments occurred at baseline, 6 weeks, 12 weeks and follow‐up. Primary outcomes include the Burden Assessment Scale and The Stress Index for Parents of Adolescents. Secondary outcomes included the caregiver's report of child behaviour, affect, mastery, coping and grief. Linear mixed model analyses were conducted, where time and the time × site interaction were defined as the fixed effects. Results: Statistically significant improvements over time were observed across outcome measures, including caregiver burden, grief, coping, and other measures. The time × site interaction was only significant for burden (P = .005). Conclusion: This study demonstrates the effectiveness of FC for caregivers of youth with MH challenges. Future research should focus on differences across geographical sites and facilitation models. Patient or public contribution: Caregivers were involved in the facilitation of FC. A person with lived experience was involved in analysing the data, reporting the results, and drafting the manuscript.
Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
Efforts to engage young adults with substance use disorders in treatment often focus on the individual and do not consider the role that the family can play in the recovery process. In summarizing the proceedings of a longitudinal meeting on substance use among young adults, this special article outlines three key principles concerning the engagement of broader family units in substance use treatment: (1) care should involve family members (biological, extended, or chosen); (2) these family members should receive counseling on evidence-based approaches that can enhance their loved one's engagement in care; and (3) family members should receive counseling on evidence-based strategies that can improve their own health. For each principle, we provide an explanation of our guidance to practitioners, supportive evidence, and additional practice considerations.
Background: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.
Background: Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. Methods: This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. Findings: The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.
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
Background: Vascular strokes are the leading cause of long-term disability for adults. They impose high levels of burden on the patient, the family, and national healthcare systems worldwide. This study aimed to assess the effects of patients’ and caregivers’ characteristics on the perceptions of burden in families caring for a loved one living with stroke in Greece. Methods: Using purposive sampling, 109 dyads of patients and their respective caregivers were recruited from the Attica region. Patients completed a questionnaire that included personal characteristics and the Barthel Index, while caregivers completed a set of questionnaires—personal characteristics, revised Bakas Caregiving Outcomes Scale (BCOS), Personal Resource Questionnaire (PRQ 2000), and Center for Epidemiological Studies-Depression (CES-D). Results: Caregiving burden was linked to both patients’ and caregivers’ characteristics. A patient’s educational level, the number of family members living in the same house, the existence of equipment and facilities in the house, and the duration of provided care were associated with perception of greater burden. Regarding caregivers’ characteristics, those in good health had a significantly lower perception of burden. Higher PRQ 2000 scores were significantly associated with higher BCOS scores (less burden), and higher CES-D scores were significantly associated with lower BCOS scores (more burden). Conclusion: Caring for a loved one affected by stroke places a considerable burden on the caregiver. Systematic assessment and intervention strategies can help to identify caregivers at risk so that suitably targeted assistance may be provided.
Background: Caring for a loved one can be rewarding but is also associated with substantial caregiver burden, developing mental outcomes and affecting happiness. The aim of this study was to determine the effects of a four-week, 16-h presential meditation program on physiological and psychological parameters and vagal nerve activity in high-burden caregivers, as compared to a control group. Methods: A non-randomized repeated-measures controlled clinical trial was conducted. Results: According to the ANCOVA results, the global happiness score (F = 297.42, p < 0.001) and the scores for all subscales were significantly higher in the experimental group than in the control group at 5 weeks. Anxiety levels were also significantly reduced in the experimental group (F = 24.92, p < 0.001), systolic (F = 16.23, p < 0.001) and diastolic blood (F = 34.39, p < 0.001) pressures, and the resting heart rate (F = 17.90, p < 0.05). HRV results revealed significant between-group differences in the HRV Index (F = 8.40, p < 0.05), SDNN (F = 13.59, p < 0.05), and RMSSD (F = 10.72, p < 0.05) in the time domain, and HF (F = 4.82 p < 0.05)) in the frequency domain, which were all improved in the experimental group after the meditation program. Conclusions: Meditation can be a useful therapy to enhance the mental health and autonomic nervous system balance of informal caregivers, improving symptoms of physical and mental overload.
Objectives: This study aims to investigate the effects of two different interventions on the self-efficacy and care burden in caregiver family members of patients with schizophrenia. Method: This semi-experimental study involved those caring for family members with schizophrenia. The family members were divided into two experimental groups and one control group. Interpersonal psychotherapy techniques and psychoeducation interventions were together applied to the first group, the second group received only the psychoeducation. Results: Interpersonal psychotherapy techniques applied together with psychoeducation were found to be more effective in reducing the burden of care and increasing the self-efficacy.
Introduction: This study examined the effects of group art therapy on depression, burden, and self-efficacy in primary family caregivers of patients with brain injuries. Method: This was a quasi-experimental, nonequivalent control group and a pre- and post-test design. This study was carried out in one national rehabilitation hospital targeting 41 primary family caregivers of patients with brain injuries. Group art therapy intervention was carried out three days per week comprising 12 sessions over four consecutive weeks. The experimental group (n = 20) received group art therapy, whereas the control group (n = 21) did not. We used a time difference method to minimize the risk of contaminating the control group by sampling sequentially. Results: For depression, although there was a significant difference after the intervention (t = 3.296, p = 0.004), the mean difference score was not statistically significant between the experimental group and the control group (t = 0.861, p = 0.395). The experimental group showed a significantly greater decrease in burden (t = 2.462, p = 0.020) and significantly greater improvement in self-efficacy (t = −6.270, p < 0.001) than the control group. Conclusions: Group art therapy may be an effective nursing intervention for primary family caregivers of patients with brain injuries.
Background: Strong family ties appear to buffer patient's and family members' difficult experiences during life and health crises. The family participatory dignity therapy programme, a patient-family-centred psychological intervention, was developed based on dignity therapy and performed by one therapist in the form of interview according to a specific question prompt. This study aimed to confirm the efficacy of the family participatory dignity therapy programme in improving the psychological well-being and family cohesion and adaptability of patients with haematologic malignancies and their family caregivers. Method: A single-blinded, two-arm parallel group, randomised controlled trial was conducted. Participants: Participants were patient-family caregiver dyads recruited from Fujian Medical University Union Hospital from March to September 2019. A total of 68 eligible dyads agreed to participate and were randomly assigned to the intervention group (n = 33) or control group receiving usual care (n = 35). Each pair of patient-family dyads in the intervention group received two or three interviews (each interview approximately lasting 45 to 60 min) performed by one therapist according to a specific question prompt containing 10 questions for patients and 10 corresponding questions for their family caregivers. To evaluate the effects of the intervention, we assessed patients' hope, spiritual well-being, and family cohesion and adaptability, as well as their family caregivers' depression, anxiety, and family cohesion and adaptability at baseline (T0), 1 week (T1), 4 weeks (T2), and 8 weeks post-intervention (T3) and compared the scores between the groups. A two-way repeated-measures analysis of variance was conducted to examine the effects of time, group, and their interaction. Results: For patients, there was a significant difference in hope (p = 0.001), spiritual well-being (p = 0.002), and family cohesion (p <0.001) and adaptability (p <0.001) between the intervention and control groups. The difference over time was also significant in family cohesion (p = 0.018) and adaptability (p = 0.003). The interaction effects were significant for hope (p = 0.034), spiritual well-being (p <0.001), and family cohesion (p <0.001) and adaptability (p <0.001). For family caregivers, there was a significant difference in anxiety (p = 0.037), depression (p = 0.001), and family adaptability (p = 0.036) between the intervention and control groups. Within groups, a significant difference in family adaptability (p = 0.012) was found. Moreover, the interaction effects were significant on anxiety (p = 0.001) and family cohesion (p = 0.038). Conclusions: The family participatory dignity therapy programme showed a positive effect on promoting patients' hope, spiritual well-being, and family cohesion and adaptability; amongst family caregivers, it decreased anxiety and depression, and enhanced family cohesion and adaptability.
Purpose: This pilot study aimed to examine the influence of death counseling on perceptions, preparedness, and anxiety regarding death and dying among family caregivers of hospice patients. Methods: Death counseling developed based on the SPIKES model was provided to 37 family caregivers in a hospice and palliative care unit. Perceptions, preparedness, and anxiety regarding death were assessed with a self-administered structured questionnaire, and participants' scores before and after counseling were compared using the paired t-test. Results: Significant changes were found in perceptions, preparedness, and anxiety regarding death after counseling. Compared to before counseling, the scores for perceptions of death (t=-4.90, P＜0.001) and preparedness for death and dying (t=-16.23, P＜0.001) improved, while anxiety (t=3.72, P=0.001) decreased after counseling. Some changes were also found in the types of support that family caregivers needed to prepare for the death of their family members in the hospice care unit. Conclusion: The findings demonstrate that death counseling could help family caregivers prepare for the death of their loved ones. Hospice and palliative care providers should play a key role in supporting family caregivers of hospice patients by developing strategies for counseling.
Introduction: Disorder of consciousness is a clinical condition due to severe brain damage. The impact of consciousness disorder on the family is characterized by a combination of biopsychosocial factors. The burden and suffering perceived by caregivers can cause psychological distress characterized by anxiety, depression, and physical illness. The aim of the study was to investigate the interaction between family dynamics and caregiver burden. Methods: We enlisted 35 caregivers of subjects in a minimally conscious state. Two skilled psychologists administered the Olson's Adaptability and Family Cohesion Assessment Scale and the Novak's Burden Inventory Caregiver Scale to assess family function and family burden, respectively. Results: We found that the caregiver burden correlates with the family adaptability and cohesion, as well as with enmeshment, rigidity, and disengagement. Conclusion: Findings suggest that the traumatic event does not affect the family structure. Families are able to maintain a balanced functioning and control distress.
Background: Taking caring of patients with mental disorders is stressful and people who take care of these patients need to receive enough support and training to overcome this challenging situation. The present study was aimed at investigating the effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders. Materials and Methods: This randomized controlled clinical trial was performed on 64 family caregivers of patients with mental disorders referred to Noor and Hazrat-e-Ali Asghar hospital in Isfahan, Iran, in 2018-19. The participants were randomly assigned to the intervention and control groups using a random number table. In the intervention group, the training program was held in 6 sessions of 90-minute training classes twice a week. Data were collected using a demographic characteristics form and the Perceived Stress Scale (PSS) before, immediately after, and 1 month after the intervention. Descriptive and inferential statistical tests such as Chi-square, Mann-Whitney, independent t-test, repeated measures ANOVA, and Kolmogorov-Smirnov test were used to analyze the data in SPSS software. Results: The result of the study showed that the total mean score of perceived stress in the intervention group was significantly less than the control group immediately after (F2=66.29, p<0.001) and 1 month after the intervention (F2=66.29, p<0.001). Conclusions: Delivering a training program on the different dimensions of support family caregivers need will reduce the perceived stress of family caregivers of patients with mental disorders. Therefore, the implementation of this intervention is recommended in this group of caregivers.
Background and Objectives: Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods: 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results: At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers' distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers' level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications: The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers' stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving.
Objective: Multiple sclerosis is a chronic, progressive neurological disease that, due to its special nature, has various physical and mental influences on the patients and their family's lives, decreasing the quality of life and threatening the meaning of life. The purpose of the present study was to evaluate the effectiveness of the group hope therapy training on the quality and the meaning of life in patients with multiple sclerosis and their family caregivers. Method: This quasi-experimental study was performed using pretest-posttest and control group. Thirty patients with multiple sclerosis along with 30 family caregivers who got low to medium scores on the Meaning in Life questionnaire by Steger (MLQ), Multiple Sclerosis Impact Scale (MSIS-29), and the Iranian Quality of Life questionnaire (IRQOL) for the caregivers were selected purposively. Then, the patients were randomly divided into two groups of 15 individuals in experimental and 15 individuals in control groups. The caregivers were grouped in the same manner. The protocol of group hope therapy training was carried out through eight two-hour sessions in two weeks separately on two experimental groups (the patients and the caregivers), and finally the posttest was given to four experimental and control groups. Results: The results of the data showed that the meaning of life in both the patient and the caregiver experimental groups increased significantly (P < 0.001), but there was no significant change in the patient and the caregiver control groups. Conclusion: Group hope therapy training is an effective intervention for improving the meaning of life and the quality of life in patients with multiple sclerosis. Also, any psychological intervention that aims to improve the quality of life in patients in an advanced stage of the disease requires attention to both the physical and the mental issues at the same time. Although group hope therapy training has improved the meaning of life in such patients, it did not have a significant impact on the quality of life. Therefore, paying attention to the stages of multiple sclerosis and the physical condition of the patients during the therapeutic intervention and adopting necessary complementary interventions seems to be essential.
Objectives: Stroke is the third leading cause of disability worldwide, influencing the whole family's health and well-being. Dyadic (i.e., stroke survivor and family caregiver) psychoeducational intervention is a potential alternative to disease management and support, targeting at the dyads of stroke survivors and their caregivers as active participants in partnership. This review aimed to evaluate the current evidence on supporting the dyadic psychoeducational intervention for the functional and psychosocial health of stroke survivors' and their family caregivers. Design: Systematic review and meta-analysis Data sources: Nine English databases (Cochrane Library, Medline, CINAHL, PsycINFO, EMBASE, British Nursing Index, PubMed, Web of Science and Digital Dissertation Consortium) and two Chinese databases (CNKI and Wanfang) were searched to identify eligible studies published from their inception to April 2020. Additional relevant studies were identified from the reference lists and bibliographies of the identified articles and a manual search of relevant journals. Review methods: Studies were searched using keywords based on the 'PICOS' framework. The eligibility of individual full-text articles was independently assessed by two reviewers in accordance with the selection criteria. The risk of bias of the included studies was assessed using Cochrane RoB 2.0. The main outcomes were subjected to meta-analysis whenever possible; otherwise, narrative syntheses were conducted. Results: Eleven studies with 1769 stroke survivors and 1578 family caregivers were identified. The meta-analysis of pooled data suggested that the dyadic psychoeducational intervention had a significant immediate (<1 month) effect on family caregivers' burden (SMD = −0.25, 95% CI: −0.50 to −0.01, p = 0.04) and a long-term (≥6 months) effect on survivors' quality of life (SMD = −0.30, 95% CI: −0.53 to −0.07, p = 0.01). Subgroup pooled analyses indicated that the interventions initiated in hospitals could significantly improve the survivors' functional independence immediately after intervention (SMD = 0.40, 95% CI: 0.08 to 0.72, p = 0.01). Conversely, the interventions initiated at home did not significantly affect this functional outcome. Conclusions: This review supports the notion that the dyadic psychoeducational intervention can be effective in improving the stroke survivors' functional independence and their family caregivers' burden for a short period and the survivors' quality of life in the long run. However, its effectiveness is not conclusive because other psychosocial health outcomes for the stroke survivors and their family caregivers have not yet been found to significantly improve after intervention. Therefore, further large-scale randomised controlled trials with a high-quality design are warranted to evaluate their effectiveness in diverse functional and psychosocial health outcomes for stroke survivors and their family caregivers.
Objectives: Caring for a family member with dementia is considered one of the activities with the greatest negative impact on a person's mental health. Developing long‐lasting and effective strategies is a challenge for caregivers. This study sought to evaluate the impact of an intervention based on a programme of motivational coaching delivered by telephone in a group of caregivers of patients with dementia compared to a control group. Methods: A randomised controlled trial with a control group and an intervention group. (CONSORT guidelines were used). Telephone calls were made during six weeks, involving a process of coaching and motivational interviews. The following variables were measured in caregivers: self‐efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were conducted at three time points: baseline, post‐intervention and three months’ post‐intervention. Results: In total, 106 caregivers participated (53 subjects in the control group and 53 in the intervention group). Statistically significant differences (ANCOVA) were found between both groups for the self‐efficacy and stress variables, with improved results in the intervention group (p < .01). Furthermore, statistically significant differences were found in the intervention group between the baseline and post‐intervention assessments, with improvements in self‐efficacy, decreased stress and decreased dysfunctional thoughts (p < .05). The results were maintained over time for both groups. Conclusions: An intervention based on telephone calls using a health coaching approach with motivational interviewing appears to be effective for the improvement of self‐efficacy and mental health of caregivers of people with moderate dementia. Furthermore, these effects appear to be maintained over time.
Objective: to analyze the effectiveness of a support intervention on the burden and stress of family caregivers and on the stroke survivors’ independence level, compared to the Control Group. Method: a quasi-experimental study conducted with 37 participants (Intervention Group, n=20; and Control Group, n=17). The intervention lasted 8 months. The outcomes of the caregivers (burden and stress) and of the survivors (independence level) were measured by the Zarit, Perceived Stress and Katz scales, at the following moments: pre-intervention, the fourth month of the intervention and post-intervention. The differences of these outcomes between groups and intra-group and the effect size were calculated using the Mann-Whitney and Friedman tests (Bonferroni adjustment by Wilcoxon) and the Kendall’s W coefficient. Results: the Intervention Group reduced burden (p=0.039) and stress (p=0.009), mainly, after 8 months of intervention, which was not observed in the Control Group. The independence level did not change between the groups or moments (p>0.05). The intervention presented moderate effect size (p=0.45 and p=0.54). Conclusion: the intervention was effective to reduce the burden and stress of family caregivers, but did not alter the stroke survivors’ independence level, when compared to the Control Group.
Background: Psycho-education may have a positive effect on family caregivers of clients with mental disorders, and promote positive psychological states such as hope. The present study aims to investigate the effect of virtual social network-based psycho-education on the hope of family caregivers of clients with severe mental disorders. Method: This study is a quasi-experimental research with a control and experimental groups. The participants of the study were 72 family caregivers of clients with severe mental disorders (36 in each group). Data were collected using demographic questionnaire and Adult Hope Scale before the study, immediately after the end of the training (first post-test), and 4 weeks afterwards (second post-test). The experimental group received psycho-education through Telegram App for four weeks. Results: The results of the demographic questionnaire showed that both groups were homogeneous. The results of the Adult Hope Scale indicated that the mean score of both control and experimental groups were statistically significant and increased in the experimental group (P < 0.001). In addition, the changes of hope score in the experimental group were statistically significant in the first post-test than the pre-test, and in the second post-test than the first post-test and pre-test (P < 0.001). Conclusions: The findings of this study suggested that virtual social network-based psycho-education promotes the hopes of the family caregivers of clients with severe mental disorders. Due to the low cost and fast access of people to virtual networks, the content of this educational program can be widely used for family caregivers.
Background: Anxiety and depression are common mental illness in stroke caregivers, resulting in significant stress to the emotion health of caregivers. Caregivers’ emotion can seriously affect the recovery rate of stroke patient, therefore, how to control and affect the caregivers’ anxiety and depression is of great importance. Method: Here three multiple centers observation and validation study were performed to screen out the risk factors for development of anxiety and depression in main family caregiver, and the effect of anxiety and depression of family caregivers on 6-month mortality of patients with moderate-severe stroke. Results: The severity of the stroke, the duration of care time and the medical payment associated with increased risk of anxiety and depression. Anxiety and depression of main family caregivers are associated with increased risk 6-month mortality of patients with moderate-severe stroke. Conclusions: Therefore, the support provided to the family caregivers might have positive effect on prognosis of the patients with stroke.
Aims and objectives: This study evaluates the short‐term (3 months), medium‐term (6 months) and long‐term (12 months) effect of family nursing therapeutic conversations added to conventional care versus conventional care on social support, family health and family functioning in outpatients with heart failure and their family members. Background: It has been emphasised that increased social support from nurses is an important resource to strengthen family health and family functioning and thus improve the psychological well‐being of patients with heart failure and their close family members. Design: A randomised multicentre trial. Methods: A randomised multicentre trial adhering to the CONSORT checklist was performed in three Danish heart failure clinics. Consecutive patients (n = 468) with family members (n = 322) were randomly assigned to either the intervention or control group. Participants were asked to fill out family functioning, family health and social support questionnaires. Data were measured ahead of first consultation and again after 3, 6 and 12 months. Results: Social support scores increased statistically significant both at short‐term (p = 0.002) medium‐term (p = 0.008) and long‐term (p = 0.018) among patients and their family members (p = <0.001; 0.007 and 0.014 respectively) in the intervention group in comparison with the control group. Both patients and their family members reported increased reinforcement, feedback, decision‐making capability and collaboration with the nurse. No significant differences between the intervention and control groups were seen in the family health and family functioning scales among patients and family members. Conclusions: Family nursing therapeutic conversations were superior to conventional care in providing social support from nurses. Relevance to clinical practice: Family nursing therapeutic conversations are suitable to improve the support from nurses among families living with heart failure.
Background: Increased demands associated with caregiving may lead to deleterious physical and mental health outcomes. Caregiving has proven to have consequences that affect both physical and psychological well-being. The purpose of this systematic review and meta-analysis was to assess the effects of exercise training on the mental and physical health of caregivers for persons living with chronic illnesses. Methods: A systematic review following the Prisma methodology was performed searching eight databases. Thirteen out of 1,632 screened studies were included for analysis. Results: The standardized mean difference was used as the effect size (ES) and was calculated such that a positive ES indicated efficacy of exercise training for improving health. Overall, the meta-analysis yielded a statistically significant and small-to-medium ES (overall ES = 0.30; 95% confidence interval = [0.08, 0.52]; p =.007). Conclusions: Our analysis supports exercise training to improve the mental and physical health of family caregivers of persons living with chronic illnesses.
Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of −1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden.
Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer’s Disease (Behave-AD) (secondary outcome). Results: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). Conclusions: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245.
Objectives: The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. Methods: In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica. Relatives completed a self-reported questionnaire consisting of the Index of Personal Economic Distress, the Family Burden scale and the Family Rituals scale. Information on financial strategies for tackling recession and income loss due to the recession was also gleaned. Results: Regarding economic distress, only 15% had frequent difficulty meeting routine financial demands in their household. The preponderant strategy was spending savings (56.8%). Income category and spending less on basic needs were the main predictors of economic distress. Conclusions: Objective poverty indices rather than burden predicted economic distress to a greater extent.
Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.
Objectives: The aims of this study were to verify actor and partner effects, by examining the effects of family resilience on post-traumatic stress symptoms (PTSS) among Chinese breast cancer patients and their primary family caregivers. Methods: In this cross-sectional study, 104 breast cancer patients (age range 20–75, Mean = 47, Standard Deviation = 10), and their principal caregivers (n = 104), were recruited from a comprehensive cancer center of a public hospital in China. The patients and their caregivers self-reported sociodemographic, family resilience, and PTSS factors. The actor-partner interdependence model were adopted to examine whether the patients and caregivers' perceived family resilience could contribute to their own ("actor effect") and each other's ("partner effect") PTSS. Results: There were significant correlations between patients' and caregivers' shortened Chinese version of Family Resilience Assessment Scale scores (r = 0.58, p < 0.01) and Post-traumatic Stress Disorder Checklist-Civilian Version scores (r = 0.69, p < 0.01). Caregivers' perceived family resilience was negatively related to their PTSS (actor effect), and the patients' PTSS (partner effect). However, the patients' perceived family resilience was not significantly related to their or the caregivers' PTSS. The primary caregivers' perceived family resilience had both actor and partner effects on patient/caregiver PTSS within the first year of breast cancer diagnosis. Conclusions: Family-based interventions should be designed to enhance family resilience to decrease PTSS within families dealing with cancer patients. Supportive care should focus on the primary family caregivers within the first year of breast cancer diagnosis.
Background: Grandmothers in the "sandwich generation" are considered as those women who are potential caregivers for two generations: older relatives and grandchildren. Methods: With the goal of understanding the factors that affect their stress and health, 149 women from southwestern Spain were interviewed using an ad hoc questionnaire that included standardized scales and subscales. Results: The results showed that age, coping strategies based on emotional support and acceptance, as well as optimism and social support improved the health of these women by reducing their perceived stress. Although caring for older relatives is related to family conflicts and worse health, conversely, caring for grandchildren is related to slightly better health. Conclusions: The results are useful for planning psychological interventions with these women and highlight the need to include family interventions.
Background: The number of informal caregivers over the age of 50 who care for multiple family members including children and elderly relatives – a practice termed 'double care' – has steadily increased in Asian countries. Despite the rise in depression and stress among such caregivers, few studies have examined factors that may mitigate their emotional exhaustion. Methods: This research examines relationships between care responsibilities and emotional exhaustion, and the mediation effects of self-care on people in their 50s through 70s who provide care to multiple family members including children and elderly parents or relatives. The participants of this study were 183 people who were providing double care. The authors used care responsibilities as the independent variable, self-care as a mediator, and emotional exhaustion as the dependent variable. Results: Results indicate that care responsibilities significantly affect emotional exhaustion, and that emotional exhaustion is mediated by self-care. Conclusions: The findings suggest that attention to self-care may reduce emotional exhaustion among caregivers in this older age group.
Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual.
Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.
Background: Given the growing number of family members who provide care to adults with a disability or illness, this study examined differences in coping resources and mental health among family caregivers of persons with various health conditions. Methods: Within the context of Ensel and Lin’s stress paradigm, 234 family caregivers participated in an online study by completing validated measures of resourcefulness, spiritual practices, caregiver burden, anxiety, and depression. Caregivers were categorized into nine groups according to their care recipient’s condition. Results: The groups differed significantly on burden and resourcefulness. Greatest burden and lowest resourcefulness were found in caregivers of persons with traumatic brain injury, stroke, and dementia. Caregivers across all groups were found to be at a similarly high risk for anxiety and depression. Conclusions: These results provide insights for tailoring interventions for caregivers, particularly those whose care recipients have traumatic brain injury, stroke, or dementia, who may benefit from resourcefulness training.
Background: Families who care for schizophrenia suffer stress and lose the ability to treat. Family stress can be mediated by resilience. Objective: This study aimed to develop a family resilience model based on family‐centred nursing for persons with schizophrenia. Methods: This study used a mixed‐method cross‐sectional approach. The population was a family of caregivers for persons with schizophrenia at Mental Hospital in Surabaya, Indonesia. The respondents were 137 families recruited by simple random sampling. Variables include family factors, risk factors, protective factors, patient factors, family stress, family resilience and family ability to care for persons with schizophrenia. The data were collected using questionnaires and then analysed with partial least squares. The statistical results afforded material for focus group discussions with six families and 10 health workers (psychiatrists, psychologists and nurses) in order to improve the model. Results: The result showed family stress was influenced by family factors (path coefficient = −0.145; t = 2.26), risk factors (path coefficient = 0.753; t = 16.7) and patient factors (path coefficient = 0.159; t = 3.23). Family resilience is influenced by risk factors (path coefficient = 0.316; t = 2.60), protective factors (path coefficient = 0.176; t = 2.22) and family stress (path coefficient = 0.298; t = 2.54). Family resilience affects the family ability to treat persons with schizophrenia (path coefficient = 0.366; t = 5.36). The family resilience model increases family capability by 13.4%. Conclusions: The model helps families through stress management by controlling the burden and stigma so that families are able to survive, rise, growing stronger and be better at caring for persons with schizophrenia.
Background and Objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. Research Design and Methods: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). Results: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. Discussion and Implications: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.
Objectives: This study had two purposes: to develop an instrument for assessing family members' caregiving needs before their older relative's knee joint-replacement surgery and to determine instrument psychometrics. Methods: In phase 1 of this validation study, we generated 34 items based on previous interviews with 138 family caregivers of patients with knee osteoarthritis (OA), an intensive literature review, and the authors' clinical experiences. In phase 2, we examined the content and face validities of the 34-item Family Members' Caring Needs Inventory (inventory) to develop a 32-item inventory. In phase 3, 150 family members of outpatients with knee OA were recruited from three hospitals in northern Taiwan and surveyed with the inventory to determine its internal consistency reliability and test–retest reliability. Results: The final 30-item inventory had excellent content and face validities. Its factor analysis yielded a five-factor solution, accounting for 82.9% of the variance. The inventory had Cronbach's α = 0.97 and intraclass correlation coefficient = 0.93, indicating very high internal consistency reliability and test–retest reliability. The inventory was perceived as easy to complete and yielded highly acceptable validity and reliability levels. After cross-cultural adaptation, this tool may be used to assess family members' caregiving needs before their relative's knee-replacement surgery. The role of family members and spouses in supporting patients with osteoarthritis (OA) is crucial. After cross-cultural adaptation, the Family Members' Caring Needs Inventory may be used by health care providers to assess and provide relevant information to meet the needs of family members caring for an older relative with knee OA. Conclusions: This assessment and specific caregiving information for family members of older knee OA patients may promote patients' quality of life and decrease their OA-related burden.
Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.
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.
Introduction: Caring for people with cognitive problems can have an impact on informal caregivers’ health and well-being, and especially increases pressure on healthcare systems due to an increasing ageing society. In response to a higher demand of informal care, evidence suggests that timely support for informal caregivers is essential. The New York University Caregiver Intervention (NYUCI) has proven consistent effectiveness and high adaptability over 30 years. This study has three main objectives: to develop and evaluate the Flemish adaptation of the NYUCI in the context of caregiving for older people with early cognitive decline; to explore the causal mechanism of changes in caregivers’ health and well-being and to evaluate the validity and feasibility of the interRAI Family Carer Needs Assessment in Flanders. Methods and analysis: Guided by Medical Research Council framework, this study covers the development and evaluation phases of the adapted NYUCI, named PROACTIVE—suPpoRting infOrmal cAregivers of older people with early CogniTIVe declinE. In the development phase, we will identify the evidence base and prominent theory, and develop the PROACTIVE intervention in the Flemish context. In the evaluation phase, we will evaluate the PROACTIVE intervention with a pretest and posttest design in 1 year. Quantitative data will be collected with the BelRAI Screener, the BelRAI Social Supplement and the interRAI Family Carer Needs Assessment at baseline and follow-up points (at 4, 8 and 12 months). Qualitative data will be collected using counselling logs, evaluation forms and focus groups. Quantitative data and qualitative data will be analysed with SAS 9.4 software and NVivo software, respectively. Efficacy and process evaluation of the intervention will be performed. Ethics and dissemination: This study has been approved by the Ethics Committee of KU Leuven with a dossier number G-2020-1771-R2(MAR). Findings will be disseminated through community information sessions, peer-reviewed publications and national and international conference presentations.
Aims: The aim is to develop and test an integrative model based on the stress and coping paradigm and the existential paradigm, to explain positive aspects of caregiving among family caregivers of persons with dementia. Design: A mixed method research, comprises a longitudinal exploratory study and a descriptive qualitative study. Methods: A total of 370 family caregivers will be recruited from community elderly centres. Questionnaires on positive aspects of caregiving and its predictors (including active dementia management strategies, meaning‐focused coping, and self‐efficacy) and contextual factors (including social support, religiosity, continuous good dyadic relationship quality, and intrinsic motivation towards caregiving) will be administered. Positive aspects of caregiving will be reassessed six months later. Path analysis will be used to test the hypothesized model. A subsample of 30 family caregivers will be interviewed individually to explore how positive aspects of caregiving develop from the caregiving experience. Inductive thematic analysis will be used to for the qualitative data analysis. The funding was approved in January 2018. Discussion: Positive aspects of caregiving represents the extent to which the caregiving experience is seen as enriching an individual's life space and resulted in health protective effects. With the increasing evidence to indicate its associating factors, it is imperative to identify the theoretical model to comprehensively elucidate the process for its development. Impact: Theoretically, this study will advance the knowledge of dementia caregiving by generating a comprehensive theory‐driven predictive model to explain how positive aspects of caregiving is developed among the family caregivers. In terms of nursing practice, the findings can inform the development of intervention to improve positive aspects of caregiving and thereby acts as a catalyst to promote the paradigm shift from 'reducing limitations' to 'optimizing strengths' in family caregivers support services.
Purpose: The present study was conducted to determine the care burden and psychiatric symptom levels of the caregivers of schizophrenic patients. Design and Methods: The caregivers of schizophrenic patients were included in this descriptive study. Findings: It was determined that there was a statistically significant difference in the care burden scores and the education, family type, and the presence of physical diseases of the caregivers (P <.05). It was determined that there was a statistically significant positive relation between age and care duration (r =.339, P =.001). Practice Implications: It is recommended that the family members are guided to plan activities that will allow the family members to relax and cover their own needs.
Purpose: To record the health promotion behaviors of family caregivers of stroke survivors, as well as potential determinants that could affect these behaviors. Methods: A cross-sectional study was carried out through home visits in the Attica region using the convenience sampling method. The studied population included 109 survivors who had suffered a stroke and experienced functional problems, and their 109 primary caregivers, who were family members, lived in the same house and were fully responsible for their care. The dependent variables were the caregivers’ health promotion behaviors, while the independent variables were the survivors and caregivers’ demographic characteristics, survivors’ functional capacity, depression, social support and changes in caregivers’ lives from caring. Results: Better health promotional behaviors were associated with the following: patient having advanced age and a high level of functionality, caregivers assessing their own state of health as “good”, greater social support, a higher educational level and a higher income level. In addition, more hours of patient care were associated with a less healthy lifestyle for caregivers. Conclusions: Promoting the health of family caregivers of stroke survivors is crucial for both survivors and caregivers. For this reason, it is of great importance to detect factors that affect the health promotion behaviors of caregivers in order to carry out appropriate interventions and improve their quality of life.
Aims and Objectives: This study examined the predictors of caregiver burden based on patient and caregiver characteristics in a sample of Spanish caregivers looking after adult patients with chronic disease. The effect of task type and patient–caregiver interaction is also analysed. Background: Specific predictors of caregiver burden have been widely examined in the literature. Few studies, however, jointly analyse a wide range of factors, including the effect of task type and patient–caregiver interaction. Design: Correlational study.MethodsOne hundred and thirty five informal caregivers for 148 care recipients were recruited from primary health care centres. The caregivers responded to the short version of the Zarit Burden Interview (ZBI), the DEPendency index‐6 Dimensions (DEP‐6D), and reported how long they spent on caregiving on a daily basis. Sociodemographic and health characteristics were also recorded. Linear and logistic regression models were used to evaluate factors associated with ZBI scores and the likelihood of being severely burdened, respectively. This research complies with STROBE guidelines for observational studies. Results: Severe burden was present in 62% of the caregivers. Regression analysis shows that burden severity increases significantly with the level of dependence when the latter is measured either by DEP‐6D or by time spent on basic activities. Care related to incontinence and mobility has the greatest effect on burden, which is aggravated when the patient has behavioural problems. Poor caregiver health or not being retired also contributes to burden levels. Conclusions: These results establish that caregiver burden is related to characteristics of both the caregiver and the care recipient as well as to their interaction.Relevance to clinical practiceThe findings indicate that the socio‐sanitary attention focused on reducing caregiver burden must address the caregiver and patient as a dyad. Identifying the dependence level and the patient's aggressive behaviour can be a good predictor of caregiver burden.
Background: The purpose of this study was to identify patterns of depressive symptom trajectory and examine the associations of the symptom trajectory with caregiving burden, family function, social support, and perceived health status of caregivers of stroke survivors during the first year of caregiving after discharge from rehabilitation center. Methods: Caregivers of stroke survivors completed a survey of depressive symptoms, caregiving burden, family function, perceived availability of social support, and perceived health status at postdischarge and 1 year. Patterns of depressive symptom trajectory (ie, symptom-free, symptom relieved, symptom developed, and persistent symptom groups) were identified by grouping depressive symptoms based on 2 assessments using the Center for Epidemiologic Studies-Depression. Repeated-measures analysis of variance and multinomial logistic regression were used to examine the associations. Results: Of the 102 caregivers, 57.8% were symptom-free, 20.6% experienced persistent depressive symptoms, 11.8% relieved depressive symptoms, and 9.8% developed depressive symptoms. There were significant changes in family function (Wilks A = 0.914, P = .038) and perceived health status (Wilks A = 0.914, P = .033) among the groups during the first year of caregiving. The persistent symptom group reported the highest level of burden and the lowest level of family function and perceived availability of social support at both assessment times. Compared with symptom-free caregivers, caregivers with persistent depressive symptoms were 7 times more likely to have fair/poor health rather than excellent/very good health at 1 year (odds ratio, 7.149; P = .012). Conclusion: Caregivers with persistent depressive symptoms are the most vulnerable to negative psychosocial outcomes and poor perceived health status during the first year of caregiving from discharge for stroke survivors.
Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100% recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36% of caregivers in CBT and 30.9 % in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45% in the control group. Similar results were obtained regarding those caregivers who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity.
Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.
Background: Caregivers are generally family members of the person and may experience psychological difficulties and may need psychological help. [...]the aim of this study is to investigate the effectiveness of Cognitive Behavioral Therapy (CBT) based interventions applied to family caregivers of people with dementia. [...]in this study, it is aimed to make a systematic review of the effects of CBT-based interventions on family caregivers of people with dementia. Methods: The current study carried out a systematic review of literature in accodance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guideliness which used in reporting systematic reviews (Moher et al. 2009). Since a national study in this context could not be reached, searches were made in English and were conducted during March 2020 using the following search terms: "cognitive behavioral therapy" and "caregivers of people with dementia", "cognitive behavioral therapy" and "dementia caregivers" "cognitive behavioral therapy" and "caregivers of Alzheimer patients", and "cognitive behavioral therapy" and "Alzheimer's caregiver". Findings: In Table 2, interface mode (face-to-face, telephone and Internet), treatment paradigm (individual and group), schedule of sessions (number, frequency and duration), CBT techniques and interventions applied, evaluation time points, measurement methods and benefits of CBT is given.
Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.
Background: Percutaneous endoscopic gastrostomy feeding tube placement is multifactorial and considered a lifesaving mechanism, which leads to a host of thoughts and feelings that affect the decision-making experience. As people live longer and the population ages, these decisions often involve the caregivers who have their own experience and therefore can result in caregiver burden and anxiety. Methods: A descriptive phenomenological study was conducted to describe and understand the caregiver's decision-making experience regarding percutaneous endoscopic gastrostomy feeding tube placement in community-dwelling adults. Edmund Husserl's philosophical underpinnings were utilized in conjunction with Colaizzi's (1978) method of data analysis to maintain the rigor of the study. Sixteen adult caregivers of patients from six rehabilitation and skilled nursing facilities were interviewed using a semistructured interview guide. The audio-recorded interviews were transcribed and thematic analysis was conducted. Findings: The study results yield four main themes: "Survival... that was the determining factor"; "The doctor decided"; "More education... just make sure they understand"; and "It makes me very scared." Implications for practice, policy, and future research are thoroughly discussed.
Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.
Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.
Objectives: We aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms. Methods: Cross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer–care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes—carer burden and depressive symptoms. Results: Over one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05). Conclusions: A substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms. Trial registration number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.
This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion.
Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers.
Background: Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap. Methods: For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively. Results: Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P < 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P < 0.001) in the patient's last year. Conclusions: Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.
Purpose: The purpose of this article is to present a clientcentered model of counseling that integrates information and personal adjustment counseling. Research has indicated that audiologists are more comfortable with counseling that is information based than with personal adjustment counseling. The prevailing model of diagnosis appears to be the medical model in which, first, a case history is taken, then testing and, finally, counseling. This model lends itself to audiologist as expert and the counseling as a separate entity based on information and advice. Further research has indicated parents retain little of the information provided in the initial examination because of their heightened emotions. Method: This article presents a client-centered model of diagnosis in which information is provided within an emotionally safe context, enabling the parents to express their feelings and have the ability to control the flow of information. The ultimate purpose of a client-centered model is to empower parents by making them active participants in the diagnostic process rather than passive recipients. Conclusion: The client-centered model has wide implications for the diagnostic process as well as for the training of students.
Background: Previous research has shown that care experiences influence the willingness for advance care planning (ACP). Family caregivers have increased contact with medical providers and procedures in the process of caring, and they have also witnessed the disability and suffering of patients. However, few studies have focused on family caregivers to understand their attitudes towards ACP. Objective: The aim of this cross-sectional study was to acknowledge family caregivers’ attitudes towards ACP and the related factors, especially care stress and experiences during the care process. Methods: We interviewed 291 family caregivers, and the demographics of the caregivers and care recipients, the clinical condition of care recipients, and the caregivers’ stress and care experiences were collected via anonymous questionnaires. Multiple logistic regression was performed to determine the factors associated with the attitudes towards ACP. Results: We found that the caregiver having private health insurance (p < 0.001) and a completed DNR (p < 0.001) and the experience of recipients admitted to the ICU (p = 0.019) are associated with caregiver’s positive attitudes towards ACP. The greater the stress of conflict within a family over care decisions, the more participants think that ACP is important (p = 0.011). Conclusion: It is suggested that (1) in a family-centered culture, a public strategy for promoting ACP could be to emphasize the benefits of ACP in reducing family conflicts, and (2) when people make financial plans, they should also be provided with information about ACP to enable them to form a more integral plan for their future.
Background: Family caregivers play an important role in providing long-term care for people with diabetes mellitus because it is a chronic disease that requires critical attention. This increases the burden of family caregivers which affects the health status of people with this disease. Therefore, the aim of this study is to determine the correlation between the burden of family caregivers and the health status of people with diabetes mellitus. Design and methods: This is an analytic observational study which was carried out in the work area of public health centers in Malang City using a cross-sectional design approach. The subjects used were 327 people with diabetes mellitus and their families were selected using the cluster sampling technique. Data collection was carried out using demographic data instruments, Zarit Burden Interview (ZBI) questionnaire to measure the burden of family caregivers and the SF 12 questionnaire to measure the health status of people with diabetes mellitus. Results: The results of the Spermank-Rank statistical test showed that there was a negative relationship between the burden of family caregivers and the health status of people with diabetes mellitus (p-value 0.000 and coefficient value of -0.333). Conclusions: It was concluded that the lesser the burden on family caregivers, the better the health status of people with diabetes mellitus. Therefore, interventions are needed to reduce the burden of family caregiver and improve the health status of patients with diabetes mellitus.
Objectives: This study aimed to examine the mediating effect of coping strategies on the relationship between family functioning and posttraumatic growth in family caregivers of people with dementia (PwD). Methods: A total of 124 family caregivers of PwD from a memory clinic were investigated from July to October 2017. Family functioning, coping strategies, and posttraumatic growth of family caregivers of PwD were measured. Data were processed using descriptive statistics, correlation analysis, regression analysis, and structural equation modelling. Posttraumatic growth was observed in family caregivers of PwD. Results: The caregiver's gender, relationship with the patient, and difficulty balancing financial income and expenditures in the past month, as well as disease severity of PwD, are significant predictors of posttraumatic growth. There were significantly positive correlations among posttraumatic growth, family functioning and positive coping strategies (P＜0.01). Positive coping strategies exert a complete mediating effect between family functioning and posttraumatic growth (β = 0.49, P < 0.05). Conclusions: A model of the posttraumatic growth of family caregivers of PwD can be established, and the relevant mechanisms can be explored. Healthcare providers should pay attention to the family functioning of caregivers and take effective measures to provide them with positive coping strategies to promote their posttraumatic growth.
Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.
Aim and objective: This study aimed to identify the variables that contributed to Quality of Life (QoL) of Alzheimer's Disease (AD) caregivers, taking into consideration the caregiving context, stressors, role strains, and resources. Methods: The sample included 102 caregivers of AD patients who answered the following instruments: Depression, Anxiety and Stress Scale-21; Satisfaction with Social Support Scale; Revised Memory and Behavioral Problems Checklist; Family Communication and Satisfaction Scales; Spiritual and Religious Attitudes in Dealing with Illness; and Quality of Life in Alzheimer's Disease – Caregiver Version. Results: Caregivers who were employed, chose the caregiving role, and received help in caring showed better QoL. Also, being younger, less caregiving daily hours, caring for patients with less memory and behavior problems, lower distress, and family satisfaction predicted better QoL. Finally, spirituality was a moderator between family communication and QoL but not between family satisfaction and QoL. Conclusion: Caregiving-context variables (age, professional status, choosing to care, receiving help in the caregiving role and duration of daily care); role strains (family dissatisfaction); stressors (caregivers' distress and patients' memory and behavioral problems); and resources (spirituality) had an impact on caregivers' QoL emphasizing the adequacy of the Stress Process Model. Intervention should also focus on spirituality given its moderating role.
Background: The number of individuals experiencing Alzheimer's disease is increasing as the population ages. The majority of individuals experiencing Alzheimer's disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. Methods: This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. Conclusions: In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer's disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.
Background: COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. Methods: We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Findings: Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Conclusions: Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.
Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach.
Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education.
Background: Caregivers of children with cystic fibrosis (CF) are at risk for psychosocial difficulties, which has been related to poorer child well-being and medical adherence. Methods: The present study utilized the National Survey of Children's Health (NSCH) to examine self-reported differences in caregiver functioning among a matched sample of caregivers of youth with CF, asthma, and healthy controls (N = 114). Results: CF caregivers reported poorer mental health and more parenting aggravation. Among CF caregivers, poorer caregiver mental health predicted less family resilience, which in turn, predicted more parenting aggravation. Conclusions: Findings have implications for prevention screening and brief interventions within pulmonary medicine.
Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS). The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu, only for patients) and MOS 36-item Short-Form Health Survey (SF-36, only for FCs) were used to measure QoL. Results: The mean scores of anxiety and depression for AL patients were 7.89 ± 3.85 and 7.18 ± 4.23, respectively. For FCs, the mean scores of anxiety and depression were 9.96 ± 3.73 and 8.64 ± 3.74. In this study, adult AL Patients' sex, patients' depression score, whether patients achieving a CR or not, education, FCs' depression score, patients' social/family well-being and emotional well-being were significantly associated with patients' anxiety or depression (p < 0.05). For FCs, depression was significantly related to the physical component summary (β = 0.127, p = 0.008). There were significant differences in anxiety (t = − 5.92, p < 0.001) and depression (t = − 4.19, p < 0.001) between patients and FCs. Conclusions: AL patients' FCs showed higher score of anxiety and depression than that of patients. The psychological health may have a potential relationship between AL patients and their FCs. Healthcare professionals can conduct family-center interventions to improve mental health and QoL of AL patients and FCs.
Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.
Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.
Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.
Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.
Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. Conclusions: The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.
Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1
Background: The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. Methods: The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Results: Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Conclusion: Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.
Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time.
Background: Consistent with global trends, population aging in South Korea is necessitating increasing admissions to intensive care units (ICU). Design: This integrative review describes the challenges experienced by family caregivers of ICU patients in South Korea and evaluates relevant intervention studies. Using Whittemore and Knafl's methods, we identify and synthesize findings from 20 (14 descriptive and 6 experimental design) articles and evaluate study quality. Findings: South Korean ICU family caregivers reported challenges such as feelings of powerlessness and vulnerability, difficulty in maintaining their own health and well-being, and mixed feelings regarding patients' transition to the general ward. Intervention studies, which were based on quasi-experimental design, examined modified visiting hours, information provision strategies, nurse-led transitional care programs, and educational support. Conclusions: Findings highlight the current state of the science in this topic area in South Korea. Future studies should use more robust methods, such as longitudinal cohort studies and randomized controlled trials.
Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.
Whether a planned or unexpected admission, having a relative in the intensive care unit (ICU) can be a time of turmoil and extreme stress for family members as well as patients. Research has identified the increased risk relatives face of developing symptoms of post-traumatic stress disorder (PTSD), which can be felt long after their loved one has been discharged from the ICU. Family dysfunction as well as physical, emotional, spiritual, and financial distress have also been reported as adverse outcomes attributable to a family member's admission to the ICU. Before strategies can be implemented to address or mitigate the risk of adverse outcomes developing, it is imperative to further understand the family members’ experience and needs. Using meta-aggregative methods, a qualitative synthesis published in this issue of JBI Evidence Synthesis reports on the multifaceted needs of family members at this time, and provides recommendations for how qualitative findings can be translated to practice environments.
Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed. A phenomenological analysis was conducted using NVivo 10. Findings: Primary and secondary caregivers experienced economic, physical, social, and psychological burdens. Also, caregivers used spirituality and perseverance to cope with their challenges. Conclusions: The findings demonstrate that caregivers’ challenges varied by type of caregiver. Researchers and policymakers should consider the type of caregiver when designing interventions to mitigate the negative impacts of family caregiving on caregivers.
Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and methods: Thirty-five caregivers of RwD attending formal healthcare services before the lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.
Aims: The aim of this study was to explore the views of mental health professionals regarding the needs of the informal caregivers of patients with chronic psychotic syndrome. Design: A qualitative research design was used. The sample consisted of 12 mental health professionals selected by a purposive sampling strategy. Data were collected through semistructured, face to face interviews. Framework analysis was used to analyze qualitative data and establish main themes and subthemes. Findings: Three main themes emerged namely, (i) impact of caring on caregivers’ lives, (ii) caregivers’ needs, and (iii) recommendations for better care. Informal caregivers’ needs were conceptualized into subthemes within the main themes. Caregivers’ increased responsibilities of caring for their relatives, the impact on their mental and physical health status and the restrictions in their social and professional life were revealed. Conclusions: Targeted health interventions and social policy planning are recommended for supporting informal caregivers and improving patient care.
Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi‐structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in‐centre haemodialysis in April 2020. Findings Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in‐centre haemodialysis have to manage several additional care responsibilities due to COVID‐19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers’ needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID‐19 pandemic.
Aims and objectives: To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background: The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design: Phenomenology. Methods: This is a phenomenological study based on semi‐structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub‐themes. Data were collected between April‐December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results: Analysis elicited five themes embracing various aspects of the caregivers' lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self‐justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions: Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho‐social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice: Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.
Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity. Methods: We conducted a scoping review comprising 11 studies (2005-2021) to examine the research literature related to the support needs of parents with a child with EB, and the impact on family unit wellbeing. Results: Most common needs identified were emotional needs, followed by practical needs, social needs and physical needs. Many parents also reported a lack of informational and psychological support. Common findings included emotional stress, lack of respite and physical strain on caring responsibility, financial stress, guilt and impact on relationships and family unit. Conclusions: Few studies exist that explore the support needs of parents of a child with EB. More attention should be paid to the support needs of parents to provide adequate care to those diagnosed with EB as well as their families.
Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.
Objective: To correlate caring ability with overburden, stress and coping of urban and rural family caregivers of patients undergoing cancer treatment. Method: Crosssectional study, carried out in a referral hospital for cancer treatment, with urban and rural caregivers who responded the following instruments: questionnaire of sociodemographic characterization of the caregiver and the care provided, Perceived Stress scale, Burden Interview scale and Brief COPE. Pearson’s correlation test was used for statistical analysis, with a significance level ≤5%. Results: A total of 163 urban caregivers and 59 rural caregivers participated in the study. Between the caring ability and stress, a negative and moderate correlation was found in rural caregivers. In the relationship between the caring ability and the overburden, there was a statistically significant correlation in urban caregivers in the interpersonal relationship and perception of self-efficacy factor. Between coping and the caring ability, a positive and moderate correlation was identified in coping focused on the problem in the knowledge dimension in urban caregivers. Conclusion: Urban caregivers had greater intensity of overburden and coping focused on the problem in relation to the caring ability.
Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.
Background: Individuals who care for aging parents or relatives often experience caregiving burden, which is associated with various negative psychological outcomes. During the current COVID‐19 pandemic, the conflict between caring for older relatives and taking the necessary personal precautions against infection may be exacerbated among individuals who belong to social groups, which perceive caring for others as an indispensable cultural construct. Accordingly, the current study examined whether feeling a part of one's community moderates the association between caregiving burden and depressive symptoms among the ultra‐orthodox society in Israel. Methods: A convenience sample of 358 ultra‐orthodox participants was collected (age range 30–70; M = 49.50, SD = 10.24), all of whom completed scales assessing caregiving burden, sense of community, and depressive symptoms. Results: Results demonstrated that high caregiving burden and low sense of community were associated with increased depressive symptoms. Moreover, sense of community moderated the caregiving burden‐depressive symptoms link, as the latter positive association was significant only among individuals reporting low levels of sense of community. Conclusions: The discussion highlights the importance of sense of community as a beneficial personal and social factor, which mitigates the negative psychological consequences of caregiving burden among such societies.
Background: Family caregivers’ role in cancer and stroke care is overly burdensome. Studies have considered burden and predictors of burden but the influence of caregiving burden on health - promoting behaviours among cancer and stroke family caregivers in Nigeria is scarce. The purpose of this study was to determine the influence of caregivers’ perceptions of burden and health-promoting behaviours on informal caregivers of cancer/ stroke patients attending tertiary care facilities in South- South Nigeria. Methods: A descriptive cross-sectional survey was employed among 410 purposively selected cancer/ stroke patients’ family caregivers in tertiary care facilities, South- South Nigeria. A standardized Zarit burden interview scale and structured questionnaire were used to measure burden and determine health-promoting behaviours respectively. Descriptive (means, standard deviation and percentages) and inferential (ANOVA) statistics with a Fisher’s protected t- test at 0.05 level of significance were used for data analysis. Results: The respondents experienced severe (F= 14.02; P= 0.810) burden in caregiving to cancer/ stroke patients. The influence of health- promoting behaviours (primary, secondary and tertiary preventions) among caregivers of cancer/ stroke is significantly high in the tertiary care facilities, South-South, Nigeria. Conclusions: aregivers of cancer and stroke patients experienced severe levels of burden and health-promoting-behaviours in terms of prevention at the primary, secondary and tertiary activities were significantly high among respondents. This calls for knowledge mobilization and dissemination in Nigeria and beyond.
Background: Caregivers of children with neurodevelopmental disorders play a central role during the rehabilitation and education processes, but they have an increasing risk of psychosocial problems even if the literature is not so agreed upon the specific and predisposing factors to that. The aim of this study was to examine possibly differences of burden levels in an Italian sample of principal caregivers of children with different kinds of neurodevelopmental disorders and to investigate the possible links between some clinical and sociodemographic variables and the levels of caregiver’s burden. Methods: 105 caregivers of school-aged children with neurodevelopmental disorders were included in the study and completed three online questionnaires (General Questionnaire, Caregiver Burden Inventory, Zarit Caregiver Burden Scale). Results: Results highlighted that about the half of caregivers show from moderate to high levels of stress, but parents of children with Autism Spectrum Disorder and Intellectual Disability show greater difficulties than parents of children with Attention-Deficit Hyperactivity Disorder, Language and/or Learning Disorder, and Developmental Coordination Disorder. Moreover, it was evident a negative correlation between the burden levels and the age of children, but also a direct correlation between the burden levels and the weekly hours of rehabilitation. Conclusions: These findings show that severity of caregiver’s burden is dependent by the type of neurodevelopmental disorder and suggest that an ecological and family-centred approach is necessary to guarantee the life health developmental course of these children.
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: Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Methods: Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. Findings: The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted.
Purpose: To assess the burden among caregivers of patients with heart failure (HF) with left ventricular ejection fraction (LVEF) ≤ 60%. The burden by New York Heart Association (NYHA) functional class was also characterized. Patients and Methods: A cross-sectional study was conducted in France, Germany, Italy, Spain, and UK from June to November 2019. Patient record forms were completed by 257 cardiologists and 158 general practitioners for consecutive HF patients. Caregivers who accompanied the patient to their consultation completed a caregiver self-completion survey voluntarily, which included the Family Caregiver Quality of Life Questionnaire (FAMQOL) and 5-level 5-dimension EuroQol questionnaire (EQ-5D-5L). Results: We analyzed 361 caregivers of patients with HF (NYHA class I, n=41; II, n=212; III IV, n=108). Mean age of caregivers was 58.8 years (NYHA I/II/III–IV: 59.1/60.8/54.6 years; p=0.0029), with majority being females (73.1%). Caregivers spent on average 19.8 hours/week caring for a HF patient, which increased with increase in NYHA class (I/II/III–IV: 11.8/18.1/25.9 hours/week; p=0.0094). Caregivers (24.1%) reported providing emotional support/encouragement to patients as the most troublesome/inconvenient caregiving activity (no significant difference across NYHA class). Nearly one-third of caregivers experienced stress (NYHA I/II/III–IV: 17.1%/28.8%/40.7%; p=0.0111) and anxiety (26.8%/24.1%/39.8%; p=0.0127) due to caregiving burden. The overall FAMQOL mean score decreased significantly (poorer QoL) with increase in NYHA class (I/II/III–IV: 58.1/56.3/52.2; p=0.0069). A trend of decreasing scores with increasing NYHA class was observed across physical, emotional, and social domains (each p≤ 0.012). Conclusion: Caregivers of HF patients with LVEF ≤ 60% experienced a significant burden, which was higher among caregivers of patients with more severe and symptomatic disease.
Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.
Background: Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. Aim: To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. Design: A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Setting/participants: Two hundred two patients with stage III–IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. Results: Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction (p < 0.01) and decreased anxiety (p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. Conclusions: This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes. Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care
Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross‐sectional study of deceased older adults and last‐month‐of‐life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three‐hundred and seventy‐five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care‐related emotional difficulty). Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269–0.724) and more daughters (OR: 0.743 [95% CI: 0.575–0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623–10.323]). Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end‐of‐life caregivers might improve patient and caregiver experiences for home and hospital deaths.
Objectives: Although siblings represent central members of the networks of caregivers and their parents, there has been limited attention to how siblings affect one another's well-being during caregiving. In this article, we draw from theories of identity and stress to examine the impact that siblings have on caregivers' psychological well-being. Specifically, we employ a mixed-methods approach to explore whether caregivers' perceptions that their siblings are critical of the care they provide their mother are associated with higher depressive symptoms and the mechanisms underlying this association. Methods: Using quantitative data collected from 404 caregivers nested within 231 families as part of the Within-Family Differences Study, we conduct mediation analyses to examine whether perceived sibling criticisms are associated with caregivers' depressive symptoms (a) directly and/or (b) indirectly through sibling tension. We then analyze qualitative data collected from the same caregivers to gain insight into the processes underlying statistical associations. Results: Quantitative analyses revealed that there was no direct relationship between perceived sibling criticisms and depressive symptoms; there was, however, an indirect relationship such that perceived sibling criticisms were associated with greater sibling tension, which in turn was associated with higher depressive symptoms. These quantitative findings were corroborated by qualitative analyses, which demonstrated that, in an effort to mitigate the negative impact of sibling criticisms, caregivers often employed strategies that may have fueled sibling tension. Discussion: These findings demonstrate how identity processes, as well as the family networks in which caregiving takes place, shape the experiences and consequences of parent care.
Background: Although the importance of caregiver engagement in a child's psychological treatment is well established within outpatient treatment settings, the question remains whether these findings can be generalized to more intensive treatment settings where caregiver engagement may be more challenging to facilitate. Design: A correlational, multi-informant design was used to collect data by caregiver self-report and therapist-report from a sample of 64 caregivers of youth referred for partial hospitalization. Results: Results show that caregivers' attitudinal self-assessment of engagement was not significantly related to their self-report of behavioral engagement (e.g. number of family sessions attended) or therapists' report of caregiver engagement. After controlling for caregiver expectations and therapist ratings of caregiver engagement, only caregiver ratings of attendance at family sessions marginally predicted treatment outcomes, but in the negative direction. Implications for adapting measures of caregiver engagement to intensive treatment settings and its impact on treatment outcomes are discussed.
Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC). Results: Caregivers (n = 1580) experienced a low‐to‐moderate risk of caregiver distress and a moderate QoL during both treatment and follow‐up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non‐spousal relationship or not living together (p < 0.05). Caregivers of patients with head‐and‐neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Conclusion: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high‐risk caregivers.
Background: Caregivers are responsible for the care of another, such as a young adult, disabled child, elderly parent, or sick spouse. Individuals who have caregiving responsibilities must blend the often-contradictory behavioural expectations from the different roles in which they reside. Methods: Building on the theoretical foundations of Conservation of Resources theory, this study tests a mediational model explicating the process through which caregiver burden impacts mental health through work-family conflict among a community sample of 1,007 unpaid caregivers in the greater Chicago area who responded to a mail survey at three time points. Results: Structural equation modelling analyses indicate strain-based conflict as being a consistent mediator between caregiver burden and mental health at baseline and two years later. These findings can inform practice and policy for workers with caregiving responsibilities.
Objective: To assess the relationship between care giver burden, hopelessness and Psychological distress. To explore the impact of care giver burden on Psychological distress and mediating role of hopelessness among carers of Thalassemia patients. Study Design: Descriptive cross-sectional study. Place and Duration of Study: At the Thalassemia center of The Children’s Hospital & the Institute of Child Health Multan, Pakistan, in seven month from 17th November 2018 to 26th March 2019. Material and Methods: Two hundred and forty (240, 48.3% males and 51.6% female) carers of Thalassemia patients were assessed on Burden Scale for Family Caregivers (BSFC), Kessler Psychological Distress Scale (K10) and Beck Hopelessness Scale (BHS). Results: Findings showed that caregiver burden was positively correlated with psychological distress (p<0.01) and hopelessness (p<0.01). Results also revealed that caregiver burden significantly positively predicted hopelessness (p<0.00) and hopelessness mediated the relationship between care giver burden and psychological distress (p<0.00). Outcomes also illustrated that there were differences on care giver burden (p<0.01), Psychological distress (p<0.00) and hopelessness (p<0.00) among carers of patients with thalassemia disorders on the ground of carer’s gender. Conclusion: Care giver burden, Psychological distress and Hopelessness are interlinked phenomenon, while male have more hopelessness and female have more care giver burden and psychological distress.
Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed.
Objectives: To assess the relationship between caregiver burden and severity of symptoms of anxiety/depression in parents of children with cerebral palsy (CP), and to identify factors differentiating the level of caregiver burden. Setting: Regional rehabilitation centres in South-Eastern Poland.ParticipantsThe study involved 190 parents of children with CP, that is, 138 women and 52 men. Primary and secondary outcome measures: Caregiver burden was assessed using Caregiver Burden Scale (CBS), while the intensity of anxiety and depression symptoms was measured using Hospital Anxiety and Depression Scale (HADS). Potential predictors were examined using Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Barthel Index (BI) as well as a questionnaire focusing on the characteristics of the child, the parent and the family. The analyses applied Pearson’s linear correlation coefficient as well as multiple regression analysis. Results: All the CBS measures are significantly correlated to HADS-A (anxiety) and HADS-D (depression). Intensity of anxiety is most visibly linked to CBS measures of disappointment and environment (p<0.0001), while severity of depression is related to emotional involvement and general strain (p<0.0001). The factors differentiating caregiver burden measure in the subscales of general strain (p<0.0001) and social isolation (p<0.0001) include the child’s age and BI, and the parent’s health status; in the subscale of disappointment (p<0.0001)—the child’s age, BI, GMFCS, as well as the parent’s age and health status; in the subscale of emotional involvement (p=0.0007)—BI, and the parent’s health status; in the subscale of environment (p=0.0002)—the child’s age and BI. Conclusions: There is a positive linear relationship between the caregiver burden measures and severity of anxiety and depression. Effort should be made to relieve caregiver burden in parents of children with CP.
Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.
The article focuses on the Caregiver Burden for People with Schizophrenia in Medan, Indonesia. Topics discussed include Caregiving for a family member with a chronic and/or major illness is held as an obligation in many cultures; and interviews were digitally recorded and transcribed, with transcriptions checked for accuracy; and participants were deidentified in the transcripts, and analysis was performed using thematic analysis.
Background: Caregiver burden is frequently studied cross-sectionally, but longitudinal studies on family caregiver burden during active cancer treatment are lacking. The goals of this study were to characterize trajectories of caregivers' burden during a 6-month active treatment period, and to examine which predictors are associated with their burden. Methods: This study was a secondary analysis of data from a prospective study. A sample of 112 family caregivers of patients receiving cancer treatment were assessed at three time points (the initiation of new treatment regimen, 3-, and 6-month follow-up). Caregivers completed measures: Caregiver Reaction Assessment and Mutuality Scale of the Family Care Inventory. Data were analyzed using latent growth curve modeling. Results: The two highest burdens were subdomains related to disrupted schedule and financial problems. Models showed a decline in schedule burden over time, yet total burden and other subscales (financial problems, health problems, and lack of family support and self-esteem) remained relatively stable. In multivariate analysis, mutuality, the relationship quality between patients and caregivers was inversely related to burden at baseline. Being a spouse, a sole caregiver and lower income were related to higher burden over time. Our findings confirmed significant determinants of caregiver burden over the course of active treatment. It is important for health care providers to be attentive to vulnerable caregivers who are at higher risk of elevated burden over time. Conclusions: Considering the multidimensional nature of caregiver burden, early assessment and tailored support programs may be effective by focusing on patient-caregiver relationships, caregiving roles, and income. • Latent growth modeling is useful for examining baseline levels and changes of caregiver burden. • Patterns over time and factors that influence burden differ, based on each burden dimension. • Caregivers who are spouses, sole caregivers, and have lower income were more at risk for higher burden over time.
Aim: Informal caregivers of cancer patients have extensive burdens. They are susceptible for deterioration of their quality of life (QOL). We aimed to assess caregiver burden and QOL of family caregivers of cancer patients receiving chemotherapy admitted in the ward/intensive care unit/high-dependency unit. Materials and Methods: This prospective observational study including 178 caregivers was carried out in a tertiary care hospital. The assessment of caregiving burden was done using the Zarit Burden Interview and its impact on QOL using the WHO BREF QOL questionnaire. Results: The mean age and mean Zarit Burden score of caregivers were 38.98 ± 10.53 and 30.697 ± 8.96, respectively. Of the total, 70.22% of caregivers reported mild-to-moderate burden and 21.38% reported moderate-to-severe burden. On assessment of QOL WHO BREF, the mean general score was 5.79 ± 1.84, physical health score was 49.65 ± 16.07, psychological health 51.85 ± 20.43, social relations 59.38 ± 21.43, and environmental 58.73 ± 17.51. The QOL scores were slightly better in mild-to-moderate burden compared to moderate-to-severe burden but not statistically significant except for social relations (P = 0.053). We did not find any difference in burden scores or QOL between male and female caregivers. Conclusion: Mild-to-moderate burden was seen in 70.22% of caregivers and 21.38% had moderate-to-severe burden.
Objective: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design: A cross-sectional survey. Setting: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). Conclusions: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.
Objectives: To examine the associations and the mechanisms between caregiver burden and compassion fatigue among family caregivers. Method: A cross-sectional study comprising 300 family caregivers of older relatives in Arab communities in Israel was conducted. Data were collected via face-to-face interviews in Arabic using structured questionnaires to identify factors associated with compassion fatigue (using a secondary traumatization stress scale). Bootstrapping with resampling strategies tested the multiple mediator model. Main findings: The results show a significant total effect of caregiver burden on compassion fatigue (b = 3.79, t (300) = 3.47, p <.001; R 2 =.50). This association was found to be partially mediated by family support (B =.81, 95% confidence interval [CI] = 0.23, 1.85) and disengagement coping (B =.97, 95% CI = 0.19, 2.14), but was not mediated by engagement coping strategies. Conclusion: Compassion fatigue is prevalent among family caregivers and requires more attention from professionals and policymakers.
Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context. Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings. Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.
Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.
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: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-Type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.
Purpose: This study aims to describe survivors of stroke circumstances, issues with providing care for survivors of stroke and services expected by caregivers and survivors of stroke. Design/methodology/approach: A qualitative research design was conducted in Singburi Province. Data collection methods included in-depth interviews, focus groups and participatory observations. Semi-structured in-depth interview guides, quality-of-life scale and depression scale were used to collect data from survivors of stroke, their caregivers, health personnel, local governors and village health volunteers. Naturalistic research tradition was used for qualitative data analysis and descriptive statistics for quantitative data analysis. Findings: The majority of survivors of stroke had hemiplegic limb and severe deficits in their activities of daily living. Caregivers were family members, and they often developed depression. Issues with providing care to stroke survivors included lack of knowledge about stroke and home care, inadequacy and discontinuity of care and the shortage of stroke care personnel in the community. A stakeholder's expected stroke services included the provision of effective continuing care, community participation in care and enhancing the village health volunteer's capacity. Originality/value: This study illustrated the stroke service systems in rural Thai communities. The study's findings could be applied when planning future research using community participation to test a model of care for stroke survivors to promote better outcomes and be responsive to the needs of stroke survivors, especially those who are disabled.
Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future.
Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID‐19 pandemic lockdowns in Japan (April 7‐May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey. Results: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID‐19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID‐19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40‐0.75, P < .01, adjusted R‐squared = .34). Conclusions: Further studies and supports for caregivers of people with schizophrenia are needed.
Background: Taking care of patients with bipolar disorder (BD) makes critical challenges for their informal caregivers (ICGs) and forces them to tolerate considerable burden. This qualitative study explored the dimensions of ICGs' care burden (CB) based on their own experiences and the patients' therapists. Materials and methods: This is a qualitative study which was conducted based on conventional content analysis through semistructured and in-depth interviews. Purposive sampling was used to select the participants including 13 ICGs and 14 therapists (2 psychiatrists, 10 psychiatric nurses, and 2 clinical psychologists). Interviews were audiotaped, transcribed verbatim, and analyzed using Graneheim's 2004 principles. Results: Qualitative analyses yielded three major themes: 'challenges associated with the nature of BD,' 'challenges related to the ICGs,' and 'challenges related to interventions.' The categories of the first theme entailed 'individual-oriented characteristics of BD' and 'social-oriented characteristics of BD.' The categories of the second theme consisted of 'social stigma,' 'psychiatric problems and helplessness of ICGs,' 'financial costs related to providing cares,' and 'insufficient self-efficacy of ICGs in cares provision.' The categories of the last theme included 'educational interventions' and 'organizational interventions.' Conclusions: This study showed that the burden of ICGs have individual, social, and organizational aspects. Every one of them impacts the severity of their burden remarkably. The depth of the therapists' experiences has a significant role in designing the interventions to reduce this burden. The present investigation emphasized the constitution of a comprehensive framework related to all factors affecting burden in a developing country.
Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer. Trial Registration ClinicalTrials.gov, NCT04010227. Registered 8 July 2019.
Objective: This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. Design: The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL). Results: The results showed that there was a negative correlation between ZBI and WHOQOL scores. Further, there was a significant negative correlation between many subdimensions of the ZBI (general quality of life, general perception of health, being satisfied with daily life skills, home conditions, energy and self-satisfaction) and the WHOQOL. Quality of life thus appeared to be reduced in family members with a high level of care burden and that the quality of life of caregivers depends on the individual characteristics of the caregiver. Conclusions: Social workers, nurses and physicians should regularly assess the burden and quality of life of caregivers.
Objectives and Method: In this study, the authors examined cancer family caregivers' life experience and the meaning of leisure, focusing on their difficulties and the role of leisure. Findings: We found four main themes related to cancer family caregivers' life and leisure experiences: stressors, adapting, the need of leisure, and leisure experiences. Our results showed that the caregivers experienced high levels of psychological and physical stress and conflicts while caring for cancer patients, resulting in a poor quality of life. They believed that leisure activity is necessary and can improve their quality of life; however, they felt a sense of guilt while engaging in personal activities.
Study objective: To investigate the association between family cancer caregivers’ unmet daily needs and emotional states of depression, anxiety and stress across their care recipient’s treatment phases. Method: A cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale. Results: Family caregivers’ unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6–9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers’ higher depression was also associated with greater unmet role management needs, regardless of treatment phases. Conclusions: Intermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers’ unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.
Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.
Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units.
Background: Caregiving appraisal is a key driver to moderating caregiving outcomes. The caregiving appraisal of informal caregivers of people with dementia requires increased attention. This study aimed to explore the feasibility and acceptability of an evidence‐based bibliotherapy protocol, and test the efficacy on improving caregiving appraisal. Design: A two‐arm pilot randomized controlled trial was adopted. Sixty informal caregivers were randomized to either the intervention group, receiving eight weekly professional‐guided bibliotherapy sessions in addition to usual care; or the usual care group. The professional‐guided bibliotherapy sessions were weekly sessions in which caregivers self‐read the designated chapter and then received telephone coaching. Caregiving appraisal, coping, psychological well‐being, positive aspects of caregiving, knowledge of dementia, and attitude toward dementia were assessed both at baseline and immediately after the intervention. Assessors were blinded to group allocation. Individual interviews among 10 participants from the intervention group were conducted to explorecaregivers' acceptance of the intervention. Descriptive statistics, χ2 test, Mann–Whitney U test, independent t test, generalized estimating equation, and content analysis were used for data analysis. This study pioneered the use of bibliotherapy among informal caregivers of people with dementia. Results: The participant recruitment rate was 69.8%. The attrition rate of the intervention group was 20%. Bibliotherapy had a significant time‐by‐group interaction effect on caregiving appraisal (p < 0.001), coping (p = 0.003), positive aspects of caregiving (p = 0.001), knowledge of dementia (p = 0.017), and attitude toward dementia (p < 0.001). The effect on psychological well‐being, however, was only significant on the personal growth subscale (p = 0.025). The acceptability was also confirmed. No adverse event was documented.
Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.
Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.
Introduction: The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results: Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.
Purpose: To explore the barriers to family resilience in caregivers of people who have schizophrenia. Design: A qualitative descriptive approach was used. Methods: Semistructured interviews were conducted with family caregivers of patients with schizophrenia registered at the psychiatry outpatient unit of a hospital center. Content analysis was performed on audio‐recorded and verbatim‐transcribed interviews. The consolidated criteria for reporting qualitative research (COREQ) checklist was applied to this study. Results: A total of 31 family caregivers participated, the majority of whom were female (71%) with an average age of 57.5 years. Most participants lived with and cared for their relative (90.3%). The caregiver role was assumed mostly by mothers (54.8%) and fathers (22.6%). Barriers to family resilience in caregivers of people experiencing schizophrenia broadly fall under five categories: lack of knowledge about the disease, social stigma, expressed emotion, involvement in the relationship, and blame. Conclusions: In view of the paucity of studies exploring and understanding the barriers to family resilience, this study presents itself as one of the first in this area. There are different barriers to family resilience. This research provides an overview and an understanding of key barriers to family resilience in caregivers of people experiencing schizophrenia. Clinical Relevance: There is a need for nurses to help families to be resilient. By understanding the barriers to resilience, nurses are able to focus on these factors and help families to remove or reduce their influence.
Background: This study aimed to analyze the efficacy of an intervention program for informal caregivers of elderly dependent that combined balneotherapy with group psychoeducation (BT-PE) based on the balanced care model. Method: The BT-PE intervention (N = 124) was compared with a comparison group only exposed to balneotherapy (BT) (N = 76). The two modalities included both primary and secondary informal caregivers. A three-way mixed ANOVA was conducted to determine the effects of two between-subjects´ factors (intervention group and caregiver type) and one within-subjects´ factor (time) on burden, depression, anxiety, maladjustment and care satisfaction. Results: Results showed less burden and more care satisfaction in both primary and secondary caregivers participating in the BT-PE program after the interventions. Primary caregivers also showed lower levels of maladjustment in the experimental group at post-intervention. Although depressive symptoms and anxiety decreased significantly in both intervention groups, BT-PE did not show lower scores compared with the application of sole BT. Conclusion: The relevance of caregivers´ psychoeducation on the balanced care model and its combination with balneotherapy is highlighted.
Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.
Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
Background: Although caregivers of patients with eating disorders usually experience a heavy caregiving burden, the effects of social support on caregivers of patients with eating disorders are unknown. This study aimed to investigate how social support for mothers who are caregivers of patients with an eating disorder improves the mothers’ mental status and, consequently, the symptoms and status of the patients. Methods: Fifty-seven pairs of participants were recruited from four family self-help groups and one university hospital in Japan. Recruitment was conducted from July 2017 to August 2018. Mothers were evaluated for social support using the Japanese version of the Social Provisions Scale-10 item (SPS-10), self-efficacy using the General Self-Efficacy Scale, loneliness using the University of California, Los Angeles Loneliness Scale, listening attitude using the Active Listening Attitude Scale, family functioning using the Family Assessment Device, depression symptoms using the Beck Depression Inventory (Second Edition), and psychological distress using the Kessler Psychological Distress Scale. Patients were evaluated for self-esteem using the Rosenberg Self-Esteem Scale, assertion using the Youth Assertion Scale, and their symptoms using the Eating Disorder Inventory. We divided the mothers and patients into two groups based on the mean score of the SPS-10 of mothers and compared the status of mothers and patients between the high- and low-scoring groups. Results: High social support for mothers of patients with eating disorders was significantly associated with lower scores for loneliness and depression of these mothers. We found no significant differences in any patient scores based on mothers’ level of social support. Conclusions: For patients with eating disorders, social support for a caregiver cannot be expected to improve their symptoms, but it may help prevent caregiver depression and loneliness.
Background: Depression among family caregivers is becoming an increasingly important issue due to a growing elderly population. This study aimed to examine the association of living with a patient with dementia and family caregivers’ depressive symptoms, among Korean adults. Methods: This study used the data of 371,287 participants after excluding those who indicated having dementia themselves from the Korea Community Health Survey of 2018–2019. Depressive symptoms were measured using the Patient Health Questionnaire-9. Data were analyzed using multiple logistic regression. Results: The rates of spouse caregivers having depressive symptoms were 9.4% and 10.8% among men and women, respectively. The odds ratio for risk of depressive symptoms among male and female spouse caregivers in comparison to non-caregivers was 2.65 and 2.28, respectively. In the subgroup analysis, the highest income group was associated with risk of depressive symptoms, with an odds ratio of 4.28 for men, and 3.02 for women. Conclusion: Having a patient with dementia in the family was significantly associated with family caregivers’ depressive symptoms. In particular, when the patient with dementia was a spouse, both women and men were likely to have depressive symptoms. To reduce the burden of caregivers, we need management policies and interventions for family caregivers.
Objectives: Novel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic. Methods: This cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status. Results: Compared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms. Conclusions: Family caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers.
Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
Aims: To examine the psychological well-being of primary caregivers of infants and toddlers with Congenital Zika Syndrome (CZS), and the roles of family resources, parenting stress, and coping strategies in caregivers' adaptation. Methods: Family caregivers (N = 50) of children with CZS who were receiving treatment at a rehabilitation hospital in Recife, Brazil participated a cross-sectional survey study. Caregivers completed measures of anxiety and depression, coping strategies, family resources, and parenting stress. Results: Mild to severe symptoms of depression were identified in 40% of caregivers and were a more prominent concern than symptoms of anxiety. Fewer family resources and high levels of parenting stress were significantly associated with both anxiety and depression. The association between parenting stress and depression was moderated by coping, such that parenting stress was associated with higher caregiver depression at low but not high levels of coping strategy use. Conclusions: Practitioners in Brazil should consider the role of family coping and resources as important resilience promoting factors in the development of new programs designed to promote psychological adaptation in caregivers to children with CZS. It is recommended that caregiver mental health support services be integrated into existing early intervention programs targeting children with CZS. Parents and other primary caregivers are encouraged to take an active role in the care and developmental monitoring of children born with CZS, but their ability to provide care may be compromised by difficulties in psychological adaptation. Moderate and severe symptoms of depression were more prominent in caregivers than moderate and severe symptoms of anxiety (20% versus 6%, respectively). Practitioners should include assessment of coping strategies, parenting stress and family resources conjointly with evaluation of symptoms of depression and anxiety as part of routine CZS family evaluations. A useful approach for caregivers in Brazil may be to more fully integrate caregiver mental health support services into existing early intervention programs for children with CZS.
Background: In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. Methods: A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. Results: The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. Conclusion: These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.
What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties. When these carers are included to care planning patients seem to benefit, as they are less likely to relapse.; What the Paper Adds to Existing Knowledge: There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow-up in the community. Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.; What Are the Implications for Practice: Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered. It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.;
Abstract: INTRODUCTION: Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.; Aim/question: To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.; Methods: Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.; Results: Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow-up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow-up were better evaluated and showed a clearer benefit in improving long-term outcomes and, in particular, reduce re-hospitalization.; Implications for Practice: Comprehensive interventions showed the clearest benefit in improving long-term clinical outcomes of patients. Future research should explore implementation, costs and cost-effectiveness, as comprehensive interventions delivered across different settings are likely to require wide-ranging organizational changes and significant resources.
This article describes the application of quality improvement (QI) to solve a long-standing, ongoing problem where service users or their carers felt they were not given enough information regarding diagnosis and medication during clinic assessments in a community mental health setting. Service users and carers had shared feedback that some of the information documented on clinic letters was not accurate and the service users were not given the opportunity to discuss these letters with the clinician. The aim of this QI project was to improve the communication between the community mental health team (CMHT) and service users and their carers. Wardown CMHT volunteered to take on this project. The stakeholders involved were the team manager and deputy manager, the team consultant, the team specialist registrar, team administrative manager, two carers and one service user. The project had access to QI learning and support through East London NHS Foundation Trust's QI programme. The team organised weekly meetings to brainstorm ideas, plan tests of change to review progress and to agree on the next course of action. The outcome was an increase in service user satisfaction from 59.9% to 78% over a period of 6 months, and a reduction in complaints to zero.
Introduction: Schizophrenia is one of the most devastating disorders, leading to long-term and progressive disability in numerous individuals. Disability reflects an interaction between features of a person's body and of the society. In all treatments, family psycho-education is also very important as disability of schizophrenia leads to burden upon family members. Caregiver burden can be either objective or subjective. Objective burdens are behavioural phenomena: disruption of the social activities and financial difficulties. Subjective burdens comprise emotional strain on caregivers. Due to the chronic nature of the disease and the disability, patients with schizophrenia as a group need most care in social and economic areas. Aim of the study: To assess the level of burden in caregivers of stable schizophrenia patients and their relation with degree of disability in schizophrenia patients. It was a cross-sectional and observation study. Material and methods: The study was carried out with 154 stable patients of International Classification of Diseases diagnosed schizophrenia and their primary caregivers. The patients were evaluated on the Indian Disability Evaluation and Assessment Scale (IDEAS) and Positive and Negative Syndrome Scale (PANSS), and the Burden Assessment Schedule (BAS) was used for their primary caregiver. Results: Two thirds of schizophrenia patients who were stable on medication for at least 6 months and diagnosed with schizophrenia for at least 2 years had mild (70.12%) and the rest had moderate disability (29.87%). Greater burden of care was experienced with increasing age. Conclusions: Caregivers' burden has a direct correlation with overall disability. Deficiency in interaction, communication and employment leads to more burden of care, but not a deficiency in self-care.
Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study.
Background and objectives Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio-demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers' burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers' knowledge and attitude towards mental illness. Results Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 +/- 7.99, 13.81 +/- 5.42, and 55.20 +/- 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ss = 4.529, p < 0.001), having higher associate stigma (ss = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ss = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers' relatives other than parents (ss = 1.815, p = 0.006), having high affiliate stigma (ss = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ss = - 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ss = 1.332, p = 0.005). The correlates for the high burden were being male (ss = 3.638, p = 0.006), non-educated caregiver (ss = 1.864, p = 0.045), having high affiliate stigma (ss = 0.467, p < 0.001), having high associative stigma (ss = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ss = - 0.221, p = 0.021), seeking traditional healers and non-psychiatrist's care from the start (ss = 2.378, p = 0.018), and caring after young mentally ill relatives (ss = - 0.136, p = 0.003). Conclusion The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended.
Aims To test a multiple mediation model of internalized stigma and caregiving burden in the relationship between severity of illness and distress among family caregivers of persons living with schizophrenia. Design This is a cross-sectional study. Methods Data were collected from a consecutive sample of 344 Chinese family caregivers of persons living with schizophrenia between April-August 2018. Instruments used in this research included the Clinical Global Impression-Severity of Illness, the Internalized Stigma of Mental Illness Scale, the Caregiver Burden Inventory, and the Distress Thermometer. Data analysis was conducted using descriptive statistics, the Spearman correlation, and regression analysis to estimate direct and indirect effects using bootstrap analysis. Results This research found that internalized stigma and caregiving burden can separately and sequentially mediate the relationship between severity of illness and distress. Moreover the mediation of internalized stigma plays the largest role among the multiple mediations. Conclusion The severity of illness, internalized stigma, and caregiving burden are significant factors of distress among family caregivers of persons living with schizophrenia. The future intervention studies which be designed aiming at the three factors may be beneficial for family caregivers of persons living with schizophrenia. Impact This research examined the psychosocial development of distress and indicated that interventions improving patients' symptoms and decreasing internalized stigma and caregiving burden can help to prevent or reduce distress among family caregivers.
Informal caregivers have a leading role when implementing health care services for people with cognitive disorders living at home. This study aims to examine the current evidence for interventions with dual satisfaction with health care services for people with cognitive disorders and their caregivers. Original papers with quantitative and mixed method designs were extracted from two databases, covering years 2009-2018. Thirty-five original papers reported on satisfaction with health care services. The International Classification of Health Interventions (ICHI) was used to classify the interventions. Most interventions had a home-based approach (80%). Reduction in caregiver depression was the outcome measure with the highest level of satisfaction. Interventions to reduce depression or increase cognitive performance in persons with cognitive disorders gave the least satisfaction. Satisfaction of both caregivers and persons with cognitive disorders increased their use of services. In the ICHI, nearly 50% of the interventions were classified as activities and participation. A limited number of interventions have a positive effect on satisfaction of both the persons with cognitive disorders and the caregiver. It is important to focus on interventions that will benefit both simultaneously. More research is needed with a clear definition of satisfaction and the use of the ICHI guidelines.
Facilitated self-help and problem-solving strategies can empower and support family carers to cope with caregiving for people with severe mental illnesses. This single-blind multi-site randomised controlled trial examined the effects of a five-month family-facilitated problem-solving based self-learning program (PBSP in addition to usual care), versus a family psychoeducation group program and usual psychiatric care only in recent-onset psychosis, with a six-month follow-up. In each of three study sites (integrated community centres for mental wellness), 114 people with early psychosis (≤5 years illness onset) and their family carers were randomly selected and allocated to one of three study groups ( n = 38). Caregiving burden (primary outcome) and patients' and carers' health conditions were assessed at recruitment, and one-month and six-months post-intervention. Overall, 106 (94.7%) participants completed the assigned intervention and ≥1 post-test. Generalised estimating equations and subsequent contrast tests indicated that the PBSP participants showed significantly greater improvements in carers' burden, caregiving experiences and problem-solving ability, and patients' psychotic symptoms, recovery, and duration of re-hospitalisations over the six-month follow-up, compared with the other two groups (moderate to large effect size, η 2 = 0.12-0.24). Family-assisted problem-solving based self-learning programs were found to be effective to improve both psychotic patients' and their carers' psychosocial health over a medium term, thus reducing patients' risk of relapse.
Background: Management of schizophrenia is now shifted to the community setting and family caregivers are the primary caregivers. Managing medications is a complex responsibility of family caregivers caring for patients with mental illness. Medication compliance contributes to improve health outcomes and reduced hospitalization for the care service users; however, little is known about attitudes and perception of family caregivers. Aims and objectives: To explore family caregivers experience towards antipsychotic medications. Methods: A purposeful sampling of 21 family caregivers was included in the study. Semi-structured interview was employed to collect data from the participants between May and October 2015. Thematic analysis approach was used to identify the common pattern in the data. Results: Four main themes emerged from the study: insight into illness (poor understanding of illness), treatment factor (thinking about medication, poor guidance for medication compliance), resources and support (availability of medication and cost of medication), health care provider factors (communication gap and poor assessment with follow-up, social dysfunction (social isolation, disruption in life routine) of the primary caregivers. Conclusions: Responsibility for providing care for patients with mental illness are taken place in the community setting and cared by family caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge.
The present study is one of the first attempts to examine the connection of physical activity with the mental health of people that care for family members with mental illness. Caregiving is a load with negative effects on well-being but caring for a family member with mental illness results to a higher psychological burden, due to other factors involved (i.e. stigma). Physical activity and exercise have been found to be variables that lead to better quality of life for caregivers in many chronic illnesses. The participants of the study were 300 caregivers of patients with mental illness - family members (96 men, 204 women) of a mean age 60.64 (+/- 10.08) years old. They were administered the Leisure Time Physical Activity questionnaire and according to their responses, they were divided in two groups: physically active and sedentary. Mental health was assessed using the DASS 21 questionnaire, with three subscales: depression, anxiety and stress. According to the results of the one-way MANOVA, physically active caregivers had a better score than their sedentary counterparts on all three DASS 21 subscales: anxiety (p < .001), stress (p < .01), depressive symptoms (p <.001). According to the results, physical activity and exercise of even low intensity, seems to play an important role on caregivers' mental health by leading to reduced stress, anxiety and depressive symptoms. Although more research is needed in this area, it seems that physical activity interventions should be considered as an additional type of support offered to caregivers of mental ill patients.
Objectives: To examine perceived stigma and its correlates in remitted patients with mental illnesses and their caregivers.; Methods: In patients with mental illnesses, their perceived stigma (Perceived Devaluation Discrimination Scale), endorsed secrecy (Secrecy scale), self-esteem (Rosenberg Self-Esteem Scale), functioning (Work Social Adjustment Scale), and emotional wellbeing (Well Being Index) were assessed. In caregivers, their perceived stigma towards patients (Devaluation of Consumer Scale) and families (Devaluation of Consumer Families Scale), emotional wellbeing (Well Being Index), and depressive symptoms (Centre for Epidemiological Studies-Depression scale) were assessed. Differences between diagnoses were examined using ANOVA. Correlation between perceived stigma among patients and caregivers was studied.; Results: Of 152 patients with mental illnesses, 76.3% and 85.53 % reported moderate-to-high levels of perceived stigma and endorsed secrecy, respectively. Of 152 caregivers, 40.13% and 25.65% reported moderate-to-high levels of perceived stigma towards patients and families, respectively. Overall, patients had high levels of perceived stigma and endorsed secrecy, low self-esteem, moderate functional impairment, and extremely poor emotional wellbeing. There were significant differences across different diagnostic categories with respect to self-esteem, functioning, perceived stigma, secrecy, and emotional wellbeing. Patients with substance use disorders reported highest perceived stigma, lowest self-esteem, and most severe functional impairment, and their caregivers reported highest perceived stigma towards patients and families, most-reduced emotional wellbeing, and highest rates of depressive symptoms. Patients' perceived stigma was not associated with caregivers' perceived stigma.; Conclusion: Perceived stigma is prevalent among patients and caregivers and affects their quality of life. The stigma associated with substance use disorder merits special attention.
Pathological narcissism is characterized by impaired interpersonal functioning, but few studies have examined the impact of the disorder on those living in a close relationship. Participants (N = 683; comprising romantic partners [77.8%], mothers [8.5%] or other family members [10%]) in a close relationship with a relative with pathological narcissism completed measures assessing levels of grief, burden, mental health, and coping style. Participants' reported burden was over 1.5 standard deviations above comparison carers of people with mood, neurotic, or psychotic disorders, and higher than carers of people with borderline personality disorder. Similarly, caseness for depression (69% of sample) or anxiety disorders (82%) in the sample was high. Relationship type, subtype expression (vulnerable/grandiose), and coping style were all found to significantly relate to experienced psychopathology. Although limitations exist regarding sample selection that may influence interpretation of results, these findings quantify the significant interpersonal impact of pathological narcissism in this sample.
Demographic changes have placed age-related mental health disorders at the forefront of public health challenges over the next three decades worldwide. Within the context of cognitive impairment and neurocognitive disorders among elderly people, the fragmentation of the self is associated with existential suffering, loss of meaning and dignity for the patient, as well as with a significant burden for the caregiver. Psychosocial interventions are part of a person-centered approach to cognitive impairment (including early stage dementia and dementia). Dignity therapy (DT) is a therapeutic intervention that has been shown to be effective in reducing existential distress, mood, and anxiety symptoms and improving dignity in persons with cancer and other terminal conditions in palliative care settings. The aims of this paper were: (i) To briefly summarize key issues and challenges related to care in gerontology considering specifically frail elderly/elderly with cognitive decline and their caregivers; and (ii) to provide a narrative review of the recent knowledge and evidence on DT in the elderly population with cognitive impairment. We searched the electronic data base (CINAHL, SCOPUS, PSycInfo, and PubMed studies) for studies regarding the application of DT in the elderly. Additionally, given the caregiver's role as a custodian of diachronic unity of the cared-for and the need to help caregivers to cope with their own existential distress and anticipatory grief, we also propose a DT-dyadic approach addressing the needs of the family as a whole.
Background: Caregiving to patients with schizophrenia is burdensome for family caregivers and has profound effects on them. Objectives: This study aimed to explore the impacts of informal caregiving among the family caregivers of patients with schizophrenia. Methods: This qualitative study was conducted on a purposive sample of 12 family caregivers of patients with schizophrenia and 3 health-care providers. Semi-structured interviews were held for data collection, and conventional content analysis was used for data analysis. Results: Four main subthemes were developed during data analysis, namely threatened health, helplessness, patient abandonment, and personal growth. Together with their eight subcategories, these subthemes were grouped into the main theme of the "Consequences of caregiving burden." Conclusion: Caregiving to patients with schizophrenia imposes heavy burden on family caregivers and has different consequences for them. The findings of this study can improve the knowledge and awareness of mental health and psychiatric nurses about schizophrenia and its consequences for family caregivers and can help them identify family caregivers who are at risk for negative consequences and design proper family-based interventions to reduce the effects of these negative consequences.
To describe the impact of the COVID-19 pandemic on help-seeking behaviors among individuals with eating disorders and caregivers. We analyzed service utilization data from the National Eating Disorder Information Centre (NEDIC). We compared the number of contacts and symptom frequency between the pandemic period and previous years. NEDIC was contacted 609 times during March 1–April 30, 2020 (72.1% individuals affected by disordered eating, 20.4% caregivers). The number of total contacts significantly increased from 2018 to 2019 and 2018 to 2020 (X2(3) = 50.34, p <.001). Among affected individuals (80.4% women), the number of contacts during the pandemic period was significantly higher (n = 439; X2(2) = 92.74, p <.001) compared to 2018 (n = 197) and 2019 (n = 312). There were higher rates of eating disorder symptoms, anxiety, and depression in 2020 compared to previous years. Thematic analysis of instant chats from the pandemic year revealed four emerging themes: 1) lack of access to treatment, 2) worsening of symptoms, 3) feeling out of control, and 4) need for support. These findings point toward the impact of COVID-19 in individuals affected by disordered eating and hold implications for service delivery during times of crises.
This is a cross-sectional study conducted with 537 family caregivers of people with mental disorders. The objective was to quantify the degree of burden experienced by men and women, and identify the most affected dimensions of their lives and the factors associated with burden manifestation by gender. The Zarit Burden Interview (ZBI) scale was used to assess burden. Mean burden was 22.8 points (SD = 6.3) for men and 27.8 points (SD = 17.8) for women. The most affected dimensions among the two groups were the same; however, among the 22 items on the scale, 11 presented significantly higher means among women. The factors associated with the manifestation of burden in both groups were as follows: low income; use of psychotropic drugs; greater degree of dependence of the service user; not receiving family support; and dissatisfaction with family relationships. For men, manifestation of burden was also associated with age. For women, there were further associations of the outcome with the presence of health problems, not having someone to share care with, and caring for the assisted person for >10 years. Our findings suggest that the degree of burden of family members caring for those with mental disorders is associated with gender, and this should be considered by services responsible for planning care shared by professionals and relatives. Guidelines for Strengthening the Reporting of Observational Studies in Epidemiology (STROBE Statement) were adhered to in this study.
WHAT IS KNOWN ON THE SUBJECT?: Adults who support an adult family member with a severe and enduring mental health problem often experience carer burden. Over time, this often negatively affects their mental and physical health and social well-being. Understanding and communicating about mental health problems in families can help to improve resilience and coping among both adults and children. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: We conducted a review of studies looking at how adult relatives understand and communicate about an adult family member's mental health problem. The findings highlight that how relatives make sense of MHP is related to historical family relationships, their mental health literacy and whether they see themselves as a "carer" or not. The findings also show that little research to date has explored how adult relatives talk with children about their parent's difficulties, and how the adults' understanding might affect what children learn about the MHP. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There is a research gap to be addressed regarding family communication with children about parental mental health problems. This knowledge gap likely impacts family-focused mental health nursing and therapy provision. Mental health nursing, therapeutic and support workers and advocates are ideally positioned to assist relatives with improving their mental health literacy and confidence communicating about mental health, and to promote inclusion of relatives and children in interventions.
ABSTRACT: Introduction Relatives are profoundly affected by an adult family member's severe and enduring mental health problem (MHP). The burdens of caring impact on adult relatives' emotional, physical and social well-being. How relatives make meaning and communicate about the MHP is thought to affect family talk about mental health, and this can impact family coping and well-being. Aim No review has yet drawn together research about how adult relatives of people with severe and enduring MHP make meaning and communicate about their relatives' difficulties. We aimed to address this gap. Method We conducted a systematic review of peer-reviewed primary research. SCOPUS, PubMed, Psychnet, SCIE, Cochrane and CINAHL+ databases were searched. Results Nineteen papers qualified for inclusion. Findings are organized under four themes: making meaning about the MHP and affected individual; conceptualizing the self in the presence of the MHP; meaning-making processes underlying relatives' well-being outcomes; and relatives' perspectives on family talk about the MHP. Discussion Historical relationships, caregiver identity and mental health literacy moderate relatives' understanding and talk about the MHP. Implications for practice Psychoeducation and communication support for relatives should be provided by mental health practitioners. Future research should address familial communication about MHP, including with children.
Objective: To explore caregivers' perspective on factors affecting the recovery of their family members diagnosed with schizophrenia.; Methods: A qualitative grounded theory approach was used. A convenience sample of seven male and eleven female family caregivers of patients with schizophrenia were invited from outpatient (n = 6), inpatient (n = 7), and psychiatric rehabilitation (n = 5) services in an Indian mental health institute to participate in semi-structured interviews. Interviews were recorded, transcribed, and analysed. Similar themes were grouped and the main themes identified.; Results: Caregivers' perspectives on factors affecting recovery from schizophrenia were categorised to two themes: facilitators and barriers. The nine facilitators were (1) getting into a precise treatment regimen and sticking to it, (2) developing some personal attributes, (3) exercising family's role diametrically, (4) paying attention to basic needs, (5) sharing with the Almighty, (6) adapting to a supportive lifestyle, (7) not being idle… engage in something, (8) coming out, being and sharing with others, and (9) having adequate resources with a good support system. The ten barriers were (1) detrimental treatment practices, (2) hampering illness impacts, (3) off-putting personality elements, (4) unaccommodating family circumstances, (5) caregivers' limitation, (6) flaccid support system and scarce resources, (7) ambiguous treatment outcome or prognosis, (8) futile religious, health, and social belief systems, (9) situational factors, and (10) presence of troubling physical or psychological stressors.; Conclusion: The recovery process is facilitated through family involvement and support by mental health professionals. Thus, giving a pre-treatment counselling to the caregivers and repeating the same content to the patients after regaining insight can be helpful.
Background - Family carers with mental illness is an integral form of care in our nation as in most Non-Western countries. With limited mental health institutions facilities, the care-givers involve various activities in furnishing care for clients with psychological disturbances. The care-givers from the family of mentally ill undergone significant trouble because of the care-giving responsibility they participate in and required assistance from mental health professionals if they face any emotional or psychological alterations. Objective - To evaluate the baseline mental health of care givers of mentally ill. To develop self help-mental health promotion model for the care givers of mentally ill. Evaluate the efficacy of self help mental health promotion model on mental health of care givers of mentally ill Methodology - A pre experimental one group pre-test and post-test design was adopted to assess the efficacy of self help mental health promotion model among the care givers of mentally ill. In this study, interventional analytical study will be used. Purposive sampling technique will be used to collect data. Selected care givers of mentally ill will be assessed primarily for positive mental health of care givers by the WEBMW scale to measure the mental wellbeing of care givers of mentally ill. And to evaluate psychological morbidities of the care givers of mentally ill will be assessed by using GM-HAT PC Marathi version. And then structured counselling programme will be given to selected sample by Self Help Mental Health Promotion Model developed by researcher as intervention. Secondary outcomes involve evaluation of efficacy of self help mental health promotion model. IEC approval was obtained from Institutional Ethics Committee, Dutta Meghe Institute of Medical Sciences (Deemed to be University)/IEC/ JUNE-2018/7345). Expected Results: This study is mainly planned to evaluate the improvement in mental health of care givers of mentally ill with the help of self help mental health promotion model, hence it will be assessed by Global Mental Health Assessment Tool and Warwick-Edinburgh Mental Well Being Scale. After 28th days of intervention the level of stress reduced down around 60%.
Acceptance and commitment therapy (ACT) is an emerging evidenced-based practice based on a psychological flexibility model encompassing six processes, including acceptance, cognitive defusion, self-as-context, being present, values, and committed action. ACT aims to improve overall psychological flexibility and the six processes. This systematic review and meta-analysis examined the effects of ACT on measures of purported processes among family caregivers. Four electronic databases were searched from the date of inception of each database to March 30, 2020. A total of 18 studies met the eligibility criteria, including 8 randomized controlled trials (RCTs), 1 nonrandomized control group pretest-posttest design study, and 9 one group pretest-posttest design studies. A meta-analysis of 8 RCTs found a moderate effect of ACT on psychological flexibility among family caregivers at the immediate posttest and follow-up. A meta-analysis of 9 one group pretest-posttest design studies showed a large effect of ACT on psychological flexibility at the immediate posttest and follow-up. No significant effect was found in measures of cognitive fusion, valued living, and mindfulness except for a meta-analysis of 2 RCTs showing a small effect of ACT on cognitive fusion at follow-up. This review discusses synthesized findings, a gap in the literature, and suggestions for future studies.
Background: Considering the importance of family participation in patients' treatment and the positive effects of simultaneous patient and family education, this study was conducted to determine the effect of a family and patient-oriented empowerment program on depression, anxiety, and stress in patients with Obsessive-Compulsive Disorder (OCD) and their caregivers' burden. Materials and Methods: This quasi-experimental study was conducted on 50 OCD patients along with their primary caregivers. The intervention group participated in eight sessions of training, each lasting from 60 to 90 min (twice a week), and the control group received the usual treatment. The Depression, Anxiety and Stress Scale, Maudsley's Obsessive-Compulsive Inventory, Goldberg's General Health Questionnaire, and Zarit's Burden Inventory were used to collect the data before, immediately after and 1 month after the intervention, and then the gathered data were analyzed with t-test and analysis of variance using the Statistical Package for the Social Sciences software, version 21. Results: The changes in the mean scores of depression (F2,48= 21.02, p < 0.001), anxiety (F2,48= 29.72, p < 0.001), and stress (F2,48= 16.52, p < 0.001) of the patients in the intervention group showed significant decrease over time; however, in the control group, there was no significant decrease in the mean scores of depression (F2,48= 1.69, p = 0.19), anxiety (F2,48= 0.47, p = 0.62), and stress (F2,48= 1.09, p = 0.34) over time. The changes in the caregiver's burden score in both groups indicated a significant decrease over time in the intervention group (F2,48= 24.70, p < 0.001) and the control group (F2,48= 33. 30, p < 0.001). Conclusions: The findings of this study revealed that concurrently training the patients and caregivers could reduce the negative emotions of the patients and their caregivers' burden.
Objective: Obsessive-compulsive disorder (OCD) is one of the leading causes of disability and poor quality of life, with impairment in many areas. It can also adversely affect family members and friends that the person lives with, and this results in a burden. We aimed to evaluate the disease burden in caregivers of patients with OCD and the factors that negatively affect caregiver burden. Method: The study population consisted of 94 patients with OCD and their caregivers. The Yale-Brown Obsessive-Compulsive Scale (YBOCS), the Hamilton Depression Rating Scale, and the World Health Organization Quality of Life Questionnaire Brief Form were filled out by the patients, and the Burden Assessment Scale (BAS) by the caregivers. Results: Longer duration of treatment, higher YBOCS obsession and compulsion scores of the patients, and lower environmental quality of life dimension scores of the patients were found to increase the BAS scores of the caregivers. Additionally, these variables were found to be significant predictors for disease burden (BAS score) (p<0.05). Conclusion: Our study revealed that many variables affect burden, even in caregivers who have no extra burden (who has no disease to cause a burden). Caregivers of patients with OCD should be included in the behavioral and pharmacologic treatment process for the benefit of both the OCD treatment management and the protection of family health.
The fluctuation of psychological conditions among people with mental disorders are suspected to burden the family caregiver. Horticultural therapy has been known as an effective complementary therapy to enhance people mental health. Family assistance in the implementation of horticultural therapy is a form of family caring which contributes greatly in determining the achievement of horticultural therapy goals. However, not many previous studies have explored family experiences when accompanying family members who suffer from mental disorders in undergoing horticultural therapy.This study aims to explore family experiences when accompanying family members who suffer from mental disorders when undertaking horticultural therapy. Qualitative research using a hermeneutic phenomenology approach was conducted in 5 homes of people with mental disorders who had experienced horticultural therapy. Five family participants were selected by purposive sampling and considered data saturation. Family data were analyzed by using data analysis content. Interview notes are read repeatedly to identify data saturation and formulate the unit of analysis. Furthermore, the data is structured through the coding phase, followed by formulating categories and abstracting them to obtain a brief overview. To guarantee the validity of the data, this study pays attention to its credibility, confirmability, dependability, transferability and authenticity. The results of the study indicate that the family is aware that while assisting the patients during horticultural therapy, the family must have strong motivation, patience, sincerity and confidence. It is proven that the patient's self-confidence, ability to interact and communicate shows positive development after undertaking horticultural therapy.As one form of complementary therapy, the sustainability of horticultural therapy should be done continuously by the health care provider accompanied by family support.
Background/Aims: Caregivers perform an important role but caring affects other roles they perform, resulting in poor time management and reduced quality of life. This study aimed to compare the time-use patterns and self-efficacy of caregivers of two groups of patients with chronic disease: those with a diagnosis of mental illness and those without a diagnosis of mental illness. Methods: Family caregivers of patients with a chronic disease who were aged between 20–60 years, resident in Arak, not taking care of another patient and literate were eligible to participate. The presence of mental illness was based on a psychiatrist's diagnosis at least 6 months before the study. The Mothers' Time Use Questionnaire, Sherer Self-efficacy Scale and a demographic questionnaire were used to capture data relating to time-use, self-efficacy and participant characteristics. Data were analysed using independent t-test and Mann–Whitney U test to identify and compare time-use patterns and self-efficacy. Results: There were no significant between-group differences in demographics or mean time-use scores in six domains (rest/sleep, leisure, housework, work/occupation, social participation and satisfaction with time management). Self-care time-use scores (time, quality, importance and enjoyment) were significantly higher for caregivers of patients with chronic disease with a diagnosis of mental illness. Patient care time-use scores were significantly higher for caregivers of patients with chronic disease without a diagnosis of mental illness. Mean self-efficacy score was significantly higher in the group caring for patients with a diagnosis of psychiatric disease. Conclusions: Chronic physical illnesses may result in greater dependence on caregivers than mental illness, increasing the amount of time spent on care and reducing caregiver self-efficacy.
The South African Mental Health Act of 2002 advocates the de-institutionalization of treatment of patients with mental disorders, so that the mental health care users or patients are treated in their communities. Although this approach is often used to discharge patients from hospital, no feasibility assessments are conducted to ascertain adequate care for these patients. The objective of the study was to explore the experiences of family members who provide home care for patients with serious mental disorders. A qualitative explorative design was used to interview 20 primary caregivers whose family members were readmitted to a public psychiatric hospital in Pretoria. Data were analysed using NVivo version 11. The findings are that caring for patients with serious mental illness at home is difficult, sometimes unbearable, because the families have to deal with violence perpetrated by the patients, safety concerns, financial difficulties and emotional turmoil, and wish that the patients would be kept in institutions. The absence of required skills and resources to care for the mentally ill at home exposes the patients and their families to emotional, financial and social difficulties, and results in unfavourable outcomes for both the patients and their families.
Background: According to the literature reviewed, although families living with a mentally ill relative often face violence, this issue has been little studied in nursing. Methods: We conducted a qualitative research study to explore the experience of families dealing with this complex reality. We adopted Jacques Donzelot's theory of the government of family as our theoretical framework and used grounded theory as our research methodology. In total, 14 participants who had been victims of violence perpetrated by relatives with severe mental illness were interviewed. Findings: Qualitative analysis led to the identification of five themes: (a) medico-legal apparatus; (b) experience of violence; (c) the family's responsibility toward the violent relative; (d) exclusion and stigmatisation; and (e) suffering and resilience. The present paper focuses on the study's central theme: the family's responsibility toward the violent relative.
Background: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI. Aim: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI. Methods: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted. Results: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated. Conclusions: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind.
This study assessed grief in caregivers of family members with alcohol use disorder (AUD) and substance use disorder (SUD) using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF). We used snowball sampling to recruit participants who had family members with AUD and SUD. The sample was comprised of 100 caregivers of family members with AUD and 75 caregivers of family members with SUD. The original MM-CFI-SF was modified by changing the wording to reflect those with AUD and SUD. The 18-item instrument consisted of 3 factors: personal sacrifice burden, sadness and longing, and worry and felt isolation. The professional care of caregivers with family members with AUD and SUD should be addressed by health professionals in the same manner as dementia caregivers. AUD and SUD caregivers may also downplay the distress, require social support, or have a common reaction to the stress and grief encountered. The correlations were moderate to strong and significant between each of the factors for both AUD and SUD caregiver scale.
This study examined the multidimensional nature of experiences of being an intimate partner of an Australian veteran or emergency service first responder (ESFR) with posttraumatic stress disorder (PTSD). Using a qualitative phenomenological approach, inductive thematic analysis was undertaken on data collected in 2017–2018 through individual interviews with a purposive sample of 22 partners of veterans, paramedics, fire and police officers living in Australia. Analysis revealed that the key concern of the participants was to protect their family unit and the intimate relationship, highlighting the ways in which they adapted, managed and coped with the changes that PTSD brought to the relationship. However, lack of understanding by healthcare providers, government, military and emergency service organizations of their daily lives, and of the strength of commitment to their relationship, resulted in a sense of invisibility and was revealed as the key barrier to the support they crave. The findings underscore the importance of recognizing the significance of the intimate relationship in trauma recovery and of responding to the support needs of the intimate partner.
People with schizophrenia have an increased risk of experiencing physical ill health and thus risk premature death. It is important to gain knowledge about the next-of-kin's experiences of lifestyle interventions in order to increase the understanding of the development of health promotion. This study aimed to describe the experiences of next-of-kin of lifestyle interventions for people with schizophrenia. Ten next-of-kin to people diagnosed with schizophrenia were interviewed and content analysis was used to analyze the data. Three categories emerged in the analysis: Low prioritization of physical health, Patients' needs for motivational support and Next-of-kin's' limited and distant participation. Mental health nurses need a holistic view of human beings and to include the patients' physical health and the role of the family in their responsibilities. Further studies are needed that focus on the views of the next-of-kin and the staff from the mental health services about the care and support needs for promoting physical health in this patient group.
Across the world, people living with schizophrenia (PLS) are often cared for by family caregivers. This is especially true in China where community-based systems of care for PLS are underdeveloped. Thus, family caregivers of PLS may experience emotional distress and burden in the absence of community-based services. Pearlin (1990) proposed a highly influential model for understanding the stress process and its relationship to health and wellbeing. Although the model has been examined worldwide, it has yet to be studied in China for caregivers of PLS. In the present study, we use Pearlin's stress process model to examine the mediating effect of perceived caregiver burden, family functioning, and caregivers' positive feelings about caregiving on PLS global functioning and caregiver depressive symptoms. We also examine whether the model differs for parent and spouse caregivers. A total of 327 primary family caregivers of PLS in Hunan province, China, were assessed cross-sectionally using culturally-validated measures. Bootstrap methods with Hayes's PROCESS Macro were used to test multiple mediation models of global functioning scores of PLS and caregiver depressive symptoms. In this first study of the stress process model of family caregivers of PLS in China, the results generally support the model. Caregiver perceived burden, family functioning, and positive caregiver feelings about caregiving all mediate the relationship between PLS global functioning and caregiver depression, with perceived caregiver burden having the strongest indirect effect. Analyses also show that the stress process differs between parent and spouse caregivers, with perceived caregiver burden a mediator for both groups but family functioning only a mediator for parent depressive symptoms. We discuss implications of these findings for extending the stress process model cross-culturally; suggest hypotheses for future research to examine parent and spouse differences; and discuss fruitful directions for intervention. • Test of the stress process model of family caregivers of persons living with schizophrenia (PLS) in China. • Results support the model with caregiver depressive symptoms predicted by global functioning of the PLS. • Caregiver burden, family functioning, and caregiver rewarding feelings mediate caregiver depressive symptoms. • The stress process model differs for parent and spouse caregivers.
Purpose: Household poverty associated with schizophrenia has been long described. However, the mechanisms by which schizophrenia may have influenced the economic status of a household in rural communities are still unclear. This study aimed to test an integrated model of schizophrenia, social support and caregiving burden on household poverty in a rural community in China. Methods: A mental health survey using identical methods and ICD-10 was conducted in six townships of Xinjin County (population ≥ 15 years old, n = 152,776), Chengdu, China in 2015. Identified persons with schizophrenia (n = 661) and their caregivers completed a joint questionnaire of sociodemographic information, illness conditions, social support and caregiving burden. Descriptive analysis was applied first to give an overview of the dataset. Then, multivariable regression analyses were conducted to examine the associative factors of social support, caregiving burden and household income. Then, structural equation modeling (SEM) was used to estimate the integrated model of schizophrenia, social support, caregiving burden and household income. Results: Households with patient being female, married, able to work and having better social function were better off. Larger household size, higher social support and lower caregiving burden also had salient association with higher household income. The relationship between schizophrenia and household poverty appeared to be mediated by the impacts of schizophrenia on social support and caregiving burden. Conclusion: There was a strong association between schizophrenia and household poverty, in which social support and caregiving burden may had played significant roles on mediating it. More precise poverty alleviation policies and interventions should focus on supporting recovery for persons with schizophrenia, as well as on increasing social support and on reducing family caregiving burden.
Objective: To synthesise qualitative research that explored caregivers' experiences of caring for family diagnosed with schizophrenia. Methods: Electronic databases including PsycINFO, PubMed, CINAHL and Scopus were searched to identify relevant journal articles published from 2000 to March 2019. Quality was assessed and thematic synthesis of the qualitative research evidence undertaken. Papers were screened and independently appraised by two reviewers using The Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist. The review was guided by Thomas and Harden's framework for thematic synthesis of qualitative research evidence. Results: The breadth of information across the 43 papers was noteworthy. Review of the findings noted that almost all of what was discussed fell into three broad themes: the 'feelings' of the caregiver towards their role, the patient and others, including the health system; the 'impacts' of the diagnosis and their caregiving role on the caregiver; and the 'needs' of the caregiver to improve the patient's quality of life and thereby the caregiver's quality of life. Within needs also came recommendations for future changes. Conclusion: Studies have shown that the caregiving process is a complex one, with both negative and positive emotional reactions, societal barriers, such as stigma and isolation, and unmet needs, such as timely, relevant and helpful information. Meeting the needs identified by caregivers has the capacity to address the impacts of the illness and caregiving and thereby reduce the negative feelings associated with the caregiver role.
Purpose Families play an instrumental role in helping relatives experiencing mental health issues to stay well. In the context of wider initiatives promoting family and carer needs, this study aims to evaluate the feasibility, acceptability and potential benefits of bespoke training to develop clinicians’ skills in working with families in crisis. Design/methodology/approach The study was an uncontrolled evaluation of a one-day workshop for home treatment team staff using pre- and post-questionnaires. Findings In total, 83 staff members participated. Overall, there was a strong agreement for the involvement of families, which increased marginally after training. There were significant changes in views about talking to family members without service user consent (p = 0.001) and keeping them informed of their relative’s well-being (p = 0.02). Qualitative feedback indicated that participants enjoyed the interactive elements, particularly role-playing. Training provided an opportunity to practice skills, share knowledge and facilitate the integration of family work into their professional role. Research limitations/implications Confident support for families contributes to effective mediation of crisis and continuation of care; factors important in reducing admission rates and protecting interpersonal relationships. Overall, the consistency of responses obtained from participants suggests that this workshop offers a helpful introduction to a family approach at times of a mental health crisis. Originality/value This pilot evaluation suggests this new one-day workshop, is a feasible and acceptable training program, which is beneficial in developing clinicians’ skills in working with families in a crisis.
Mechanisms underlying the manifestation of relatives' expressed emotion (EE) in the early stages of psychosis are still not properly understood. The present study aimed to examine whether relatives' psychological distress and subjective appraisals of the illness predicted EE dimensions over-and-above patients' poor clinical and functional status. Baseline patient-related variables and relatives attributes comprising criticism, emotional over-involvement (EOI), psychological distress, and illness attributions were assessed in 91 early psychosis patients and their respective relatives. Relatives were reassessed regarding EE dimensions at a 6-month follow-up. Relatives' psychological distress and illness attributions predicted criticism and EOI over-and-above patients' illness characteristics at both time points. Relatives' increased levels of anxiety, attributions of blame toward the patients, an emotional negative representation about the disorder, and decreased levels of self-blame attributions predicted EE-criticism at baseline. Relatives' anxiety and negative emotional representation of the disorder were the only significant predictors of EE-criticism at follow-up, whereas anxiety, attributions of control by the relative and an emotional negative representation about the disorder predicted EE-EOI both at baseline and follow-up assessments. Understanding the components that comprise and maintain EE attitudes should guide early psychosis caregivers in family interventions, enhancing proper management of psychological distress and reduction of negative appraisals about the illness. The prevention of high-EE attitudes over time in a sensitive period such as early psychosis might be critical in shaping the health of caregivers and the outcome of the affected relatives.
This pilot study evaluated a video-based educational program for improving communication skills and reducing family violence between parents and their adult children with schizophrenia. We used a one group pretest-posttest design. The program included a main 90-min video and six stories, each 20–30 min long. We made assessments at baseline and program completion (three months after baseline). Sixty-six parent participants completed the intervention. The average frequency of acts of family violence significantly decreased from 11.4 (SD = 26.2) at pretest to 5.1 (SD = 13.2) at posttest (p = 0.016). Our findings showed significant improvements regarding expressed emotion, psychological distress, family empowerment, and hope, demonstrating preliminary positive results for this video-based educational program. The program was shown to be feasible for support/educational groups of family members of adults with mental disorders to deliver and may also be useful for practitioner-led educational groups for families in public health centers or medical settings to offer.
Background: Integration of mental health services into primary health care systems has been advocated as a strategy to minimize the tremendous mental health treatment gap, particularly in low- and middle-income countries. Barriers to integration of mental health into primary health care have been widely documented; however, very little is known about the perception of service users and their caregivers on primary care-based mental health services. This study assessed service users' and caregivers' perceptions of mental health services provided by trained primary health care workers in Nepal. Methods: A qualitative study was conducted among people with depression, psychosis, alcohol use disorder and epilepsy, and their caregivers in Chitwan, a district in southern Nepal. Semi-structured interviews were conducted with 43 service users and 38 caregivers to assess their perceptions about the accessibility of the services, types of services they received, skills and competencies of health care providers, satisfaction and barriers to receiving services. Results: Overall, both service users and caregivers were satisfied with the mental health services provided by primary health care providers. They also perceived health workers to be competent and skillful because the services they received were effective in reducing their mental health problems. Both psychological and pharmacological services were made available free of cost, however, they considered psychological services more effective than pharmacological treatment. Major challenges and difficulties accessing services were associated with frequent transfer of trained health workers, non-availability of the same health care provider at follow-ups, frequent stock-out of medicines or non-availability of required medicines, lack of a confidential space for consultation in health facilities, and stigmatizing and negative behavior of some health workers. Conclusion: The results demonstrated that both service users and caregivers perceived primary care-based mental health services to be accessible, acceptable and effective. The key recommendations emerging from this study for improving mental health services in primary care include the provision of a separate cadre of psychosocial workers to provide psychological interventions, developing quick and efficient mechanisms for the procurement and supply of psychotropic medicines, establishing a confidential place within health facilities for consultation, and further training of health workers to reduce stigma.
Training-based intervention such as psychoeducational groups has become increasingly popular to empower family caregivers of people with schizophrenia, yet existing supportive programs for caregivers tend to focus more on the needs of the patients rather than the development of the caregivers. This study aimed to compare the outcomes of a skill-based empowerment psychoeducational group and an inner-resource enhancing empowerment narrative therapy group for family caregivers of people with schizophrenia. We conducted a randomized controlled trial with a longitudinal design. The sample consisted of 132 family caregivers who were randomly assigned to eight sessions of the two groups (i.e. a narrative-based group, or a psychoeducational group), or a control group with delayed treatment. Psychometric scales were administrated throughout the project. Both the psychoeducational group and the narrative group showed significant improvements in family relationships, caregiving burden, and coping skills compared with the control group across the three time points (pretest, posttest, and 2-month follow-up). A statistically significant advancement in coping skills was found in the psychoeducational group. The narrative group outperformed the psychoeducational group and the control group in the enhancement of inner resources, perceived control, and level of hope. The findings call for the need of an integrative empowerment approach that both values the inner strength and unique experiences of the caregivers and at the same time provides them with necessary skills and knowledge in taking care of their family members with schizophrenia.
The aim was to explore informal carers' perceptions of supporting the everyday life of a relative who has a psychiatric disability and resides in supported housing (SH). A qualitative study based on interviews with 12 informal carers was performed, and the data was analyzed with qualitative content analysis. The theme "Navigating in a misty landscape when striving to support a relative with a psychiatric disability" was identified, encompassing four categories pertaining to residents' needs, collaboration, environmental issues and the carer's situation. SH services can be enhanced by addressing informal carers' experiences and developing greater collaboration involving informal carers, residents and staff.
Background: The CAregiver Perceptions About CommunIcaTion with Clinical Team members (CAPACITY) instrument measures how care partners perceive themselves to be supported by the patient's health care team and their experiences communicating with the team. Objectives: The objective of this study was to assess the measurement properties (ie, structural validity of the construct and internal consistency) of the CAPACITY instrument in care partners of patients with cognitive impairment, and to examine whether care partner health literacy and patient cognitive impairment are associated with a higher or lower CAPACITY score. Research Design: This was a retrospective cohort study. Subjects: A total of 1746 dyads of community-dwelling care partners and older adults in the United States with cognitive impairment who obtained an amyloid positron emission tomography scan. Measures: The CAPACITY instrument comprises 12 items that can be combined as a total score or examined as subdomain scores about communication with the team and care partner capacity-assessment by the team. The 2 covariates of primary interest in the regression model are health literacy and level of cognitive impairment of the patient (Modified Telephone Interview Cognitive Status). Results: Confirmatory factor analysis showed the CAPACITY items fit the expected 2-factor structure (communication and capacity). Higher cognitive functioning of patients and higher health literacy among care partners was associated with lower communication domain scores, lower capacity domain scores, and lower overall CAPACITY scores. Conclusions: The strong psychometric validity of the CAPACITY measure indicates it could have utility in other family caregivers or care partner studies assessing the quality of interactions with clinical teams. Knowing that CAPACITY differs by care partner health literacy and patient impairment level may help health care teams employ tailored strategies to achieve high-quality care partner interactions.
Background: Family caregivers contribute to engagement in treatment and adherence, reduced substance misuse and relapse, and increased well-being of recipients with substance use disorder. However, providing care has also been associated with negative emotional and physical health outcomes for caregivers. The purpose of this integrative review was to determine what instruments are used to measure caregiver burden in informal caregivers of individuals with substance use disorder. Methods: An integrative review framework was applied to examine empirical and theoretical literature to answer the guiding research question, "How is caregiver burden measured in caregivers of individuals with substance use disorder?" PubMed, CINAHL, and APA PsychINFO were searched using a combination of search terms. The initial 1,198 articles were narrowed to 32 that fit the search criteria and purpose of the review. Results: A variety of scales have been used to measure caregiver burden. Caregiver burden is operationalized as objective or subjective burden. Objective burden refers to changes in the home, finances, employment, social life, and leisure, whereas subjective burden refers to the emotional reaction of the caregiver in coping with providing care. Caregiver burden was most often reported as moderate to severe in populations with substance use disorder. Attributes measured included anxiety, depression, stress, worry, displeasure, care recipient behavioral problems and substance abuse, stigma, relationship strain, financial expenses, social support, family disruption, and the effect on caregiver physical and emotional health. Conclusions: Specific instruments that can accurately evaluate objective and subjective caregiver burden are needed to measure the quality of caregiver health. More research is necessary to better understand the physical and emotional health of caregivers of persons with substance use disorder and the factors that contribute to increased quality of life. Understanding the relationship between outcomes and protective factors could help nurses to develop prevention strategies and treatment interventions aimed at decreasing the psychosocial trauma and stress associated with caregiver burden.
Background: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. Methods: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. Discussion: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. Trial Registration: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
Background: Many clinical trials have assessed treatments for depressive disorders and bipolar depression. However, whether, and which, assessed outcome domains really matter to patients, informal caregivers, and health-care professionals remains unclear.; Methods: We did an international online survey in French, German, and English. Participants were adult patients with a history of depression, informal caregivers, and health-care professionals, recruited by purposeful sampling. To identify outcome domains, participants answered four open-ended questions about their expectations for depression treatment. We disseminated the survey without restriction via social media, patient and professional associations, and a media campaign. Four researchers independently did qualitative content analyses. We assessed data saturation using mathematical models to ensure the comprehensive identification of outcome domains.; Findings: Between April 5, 2018, and Dec 10, 2018, 1912 patients, 464 informal caregivers, and 627 health-care professionals from 52 countries provided 8183 open-ended answers. We identified 80 outcome domains related to symptoms (64 domains), such as mental pain (or psychological or psychic pain, 523 [17%] of 3003 participants) and motivation (384 [13%]), and functioning (16 domains), such as social isolation (541 [18%]). We identified 57 other outcome domains regarding safety of treatment, health care organisation, and social representation, such as stigmatisation (408 [14%]).; Interpretation: This study provides a list of outcome domains important to patients, informal caregivers, and health-care professionals. Unfortunately, many of these domains are rarely measured in clinical trials. Results from this study should set the foundation for a core outcome set for depression.; Funding: Fondation pour la Recherche Medicale and NIHR Oxford Health Biomedical Research Centre.
Objective: Psychological interventions reduce the impact of psychosis, but widescale implementation is problematic. We tested the feasibility of group acceptance and commitment therapy for Psychosis (G‐ACTp), delivered by frontline staff, and co‐facilitated by service‐user experts‐by‐experience (SU‐EbyE), for service‐users and informal caregivers (ISRCTN: 68540929). We estimated recruitment/retention rates and outcome variability for future evaluation. Methods: Staff and SU‐EbyE facilitators completed 1‐day workshops, then delivered closely supervised G‐ACTp, comprising four sessions (weeks 1–4) and two boosters (10 and 12 weeks). Participants recruited from adult community psychosis services were randomized to receive G‐ACTp immediately or after 12 weeks, completing outcome assessments at 0, 4, and 12 weeks. Service‐use/month was calculated for 1‐year pre‐randomization, weeks 0–12, and 5‐year uncontrolled follow‐up. Results: Of 41 facilitators trained (29 staff, 12 SU‐EbyE), 29 (71%; 17 staff, 12 SU‐EbyE) delivered 18 G‐ACTp courses. Participant refusal rates were low (9% of service‐users [10/112]; 5% of caregivers [4/79]); 60% of those invited to participate attended ≥1 G‐ACTp session (64% of service‐users [39/61]; 56% of caregivers [35/63]). Randomization of facilitators and participants proved problematic and participant follow‐up was incomplete (78% [66/85]; 82% of service‐users [36/44]; 73% of caregivers [30/41]). Effect sizes ranged from very small to large mostly favouring treatment. Service‐use reductions require cautious interpretation, as very few participants incurred costs. Conclusions: Implementation appears feasible for service‐users; for caregivers, retention needs improving. Outcome variability indicated n = 100–300/arm followed up (α = 0.05, 90% power). Methodological limitations' mean replication is needed: identified sources of potential bias may be reduced in a cluster randomized design with sessional outcome completion. Practitioner points: Group acceptance and commitment therapy can be successfully adapted for people with psychosis and their caregivers.Implementation (training and delivery) is possible in routine community mental health care settings.Clinical and economic outcomes are promising, but replication is needed.Recommendations are made for future studies.
This qualitative study was carried out to determine the burden of care on Turkish caregivers of patients with substance use disorder. The sample included relatives of 42 patients hospitalized in the Akdeniz University Alcohol and Drug Addiction Research and Application Center. Individual in-depth, open semi-structured interviews were used for data collection. Moreover, demographic questions and an interview guide with questions were also used. According to the results of this study, the following themes were evaluated: difficulties experienced, coping, and needs. The findings showed that substance abuse has adverse consequences and negatively affects both the patients and their relatives in terms of economic, psychological, and social aspects. Furthermore, because of the social stigma of substance abuse, the families receive very limited social support from the environment. This weakens the well-being of the family members and increases intrafamily conflicts. We conclude that ensuring the well-being of the caregivers of patients with substance use disorder is useful in maintaining a successful treatment of addiction. Thus, policymakers should include the relatives of patients with substance use disorder in prevention and intervention programs to increase the effectiveness of the interventions.
Objectives: This study systematically reviewed existing qualitative evidence of family members' experiences prior to the initiation of mental health services for a loved one experiencing their first episode of psychosis (FEP). Methods: A meta-synthesis review of published peer-reviewed qualitative studies conducted between 2010 and 2019 were included. Keyword searches were performed in four electronic databases and the reference lists of primary manuscripts. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess methodological quality of each study. Results: A total of 365 articles were initially identified and 9 were articles identified in a secondary review and literature search. A total of 21 met inclusion criteria. Of those included in this review 169, mothers were the primary family to recall experiences. The meta-synthesis identified four major themes related to family member experiences prior to the initiation of mental health services for FEP: the misinterpretation of signs, the emotional impact of FEP on family members, the effect of stigma on family members, and engaging with resources prior to mental health services for FEP. Conclusions: Additional research is needed to develop healthy communication strategies that effectively deliver educational information about psychosis. This meta-synthesis also identified the need to understand help-seeking behaviors among families of those with FEP in effort to reduce the duration of untreated psychosis and improve pathways to care often initiated by a family member.
The present study investigated how stressors experienced by caregivers of people with personality disorders relate to each other and psychological distress, using the Stress Process Model (Pearlin et al. in Gerontologist 30(5):583–594, https://doi.org/10.1093/geront/30.5.583, 1990). A community sample of caregivers (N = 106) completed an online survey. Partial Least Squares Path Modelling revealed that caregivers who were male, younger, or residing with their loved one were more likely to experience stressors. Salient primary stressors included the caregivers' worry and care-receivers' levels of instrumental demands and interpersonal problems. Important secondary stressors included strains in the caregivers' schedules, family relationships, and health, as well as reduced mastery and caregiving esteem. The model provided preliminary support for a pathway from demographic and relationship characteristics, through primary and secondary stressors, to heightened psychological distress. The present study clarifies the way caregiving stressors give rise to psychological distress; directions for future research are discussed.
Clinicians have long identified the psychological impacts and objective burdens on family members and caregivers who support loved ones with psychiatric conditions. However, there is a lack of programming available to support families with relatives who have been diagnosed with a personality disorder, and research in this area is scant. The current pilot study evaluated the impact of providing a peer-led education group for loved ones of individuals diagnosed with borderline personality disorder (BPD). A mixed-methods study design was implemented: quantitative self-report scales were used to derive scores of mastery and burden and focus groups gathered qualitative narratives. Data were collected from participants (N = 15) before and after the group intervention, as well as 4 months later. Quantitative results indicated that while participants initially reported a sense of burden in their caregiving role, their self-report of this phenomenon reduced over time following engagement with the group. The focus groups revealed that participants found the group had a positive impact on their well-being as a result of the information, skills acquisition, and support/validation they received. They also noted clinical improvements for their relatives with BPD. This study provides preliminary evidence for the effectiveness of the peer-led education group in supporting families. The results suggest that particular variables such as peer leadership, skills-based learning, and focus on caregiver wellness—rather than on the person with a diagnosis – may explain improved outcomes of this family intervention.
Purpose France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric conditions, the lack of appropriate structures and the shortage of skilled mental health professionals, but it also leaves families in critical situations. The purpose of this study is to explore the carers’ caregiving experiences and to suggest ways to organise educational programmes to support mental health carers in France. Design/methodology/approach The research was conducted from January 2018 to November 2019. It included French carers of patients with mental conditions. Recorded semi-structured interviews were used and findings were analysed through an inductive thematic analysis and regrouped into key themes. Findings Participants had overwhelming negative representations of “mental illness”. The fact that they were excluded from participating in the patient’s health management further added to their misconceptions around mental disability, it limited their communication with their family and amplified their burdens. Research limitations/implications There is an urgent need for carer empowerment; carers should be included in educational programmes, they should benefit from French Government subsidies and social-network assistance and receive quality assistance by trained mental health professionals. The critical situation of carers can only be addressed by combining these three steps and through the action of appropriate actors in the field of mental health, thus alleviating the current paradigm of psychiatric care in France. Originality/value Thousands of research papers regarding carers have been published in other countries. In addition yet, to the knowledge, only a few investigations on French mental health carers have been conducted to this day. The singularity of this research lies in the rare individual interviews, which provided us with first-hand testimonies of mental health carers in France. This data could be of vital aid for professionals and for policymakers when advocating for better support of carers in mental health.
Family caregivers of people with mental disorders face a number of burdens and stressors, such as associative stigma and burnout. These burdens are often a result of their caring role coupled with insufficient support or ineffective coping strategies, which can affect their quality of life and biopsychosocial integrity that, in turn, may affect the care they provide. This study aimed to explore the experiences of family caregivers of people with mental disorders, through examining the burdens that they face and the coping strategies that they use. Using a descriptive qualitative approach, 13 semi-structured interviews were conducted with members of the Saudi public, recruited through popular social media platforms and analyzed using thematic analysis. Five main themes were constructed from the data: Type of care, Challenges, Coping and support, Perceptions of public awareness, and Messages to others. The findings emphasize the different types of burdens that caregivers experience, and their needs that require a range of responses such as educational training on effective coping strategies, and psychological support in the form of counseling or group therapy. This study highlights the voice of caregivers and their message to the public, in order to correct the misconceptions surrounding mental disorders and those associated with them.
People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.
Introduction: Informal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism.; Methods and Analysis: This randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively.; Ethics and Dissemination: The research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications.; Trial Registration Number: NCT04020497.
Background: Strengthening the coping resources as an instruction for anxiety-regulation may affect the emotion-regulation of families. Regarding the significant role of families in health of these patients, it seems that interference in strengthening coping resources affects their emotion-regulation. Aim: This study aimed to determine the effect of strengthening family coping resources on the emotion-regulation of schizophrenic patients' caregivers. Method: This quasi-experimental research was conducted on families with hospitalized schizophrenic patients in one of the most prominent psychiatric centers in the Northeast of Iran in 2018. The participants were assigned to intervention (n=29) and control (n=31) groups. A short revised form of Emotion-Regulation Questionnaire was utilized as data collection tool. The intervention based on strengthening family coping resources (SFCR) was administered in three modules and 15 group sessions (groups of 6-8 individuals) according to the instructions of the multi-family model of Kisser et al. On the other hand, the controls received routine cares in hospital wards. The data were analyzed in SPSS software version (16) using independent and paired t-tests. Results: The groups were homogenous in terms of demographic characteristics. The result of independent t-test demonstrated a significant difference in the mean score of revaluation (P=0.001) and suppression (p=0.001) in the intervention group, compared to the control group, after the intervention. Implications for Practice: This intervention can guide clinicians on how to implement a familycentered care program to reduce the burden of caring schizophrenic patients through gaining family support in the efficient care of these patients.
Background and Aim: Incorrect beliefs and negative thinking of society and in the family affect psychiatric patients over the process of treatment, care and recovery. The aim of this study was to investigate the effect of group counseling on the attitude of family caregivers in patients with mental disorders. Materials and Methods: This quasi experimental study was conducted in psychiatric wards of Farshchian Hospital in Hamadan in Iran in 2018. 49 family caregivers were randomly selected to the study. Data were collected using a researcher-made mental attitude questionnaire. At first, family caregivers' attitudes were evaluated; then, they held 4 groups and for each group done 4 sessions of 60 minutes of group counseling. The questionnaire was completed again by the family caregivers immediately after the intervention. Data analysis was done using SPSS software version 16 using descriptive and inferential statistics. Results: The mean of the attitude of the family caregivers before the group counseling was (12.59 ± 13.49). The mean of the attitude score of family caregivers after group counseling was (24.45 ± 8.32). Paired t-test showed that the attitude score of caregivers increased significantly after group counseling (p <0.001). Discussion and Conclusion: The results of the study indicate that group counseling improves the attitude of family caregivers towards mental illness. Therefore, it is recommended that psychiatric nurses use this method to educate families of mental patients.
Schizophrenia is the most severe chronic disabling psychiatric disorder that needs long term care in various aspects. Therefore, the family's emotional atmosphere caused by the disease affects the condition of the patients' caregivers. This study aimed to investigate the effect of emotional regulation training on stress, anxiety, and depression in caregivers of patients with schizophrenia. The study was a randomized controlled trial. Seventy caregivers of patients with schizophrenia randomly assigned to a group that received emotion regulation training and a control group. The intervention group was trained about emotion regulation during eight 90-min sessions. The participants completed the Depression, Anxiety and Stress Scales-21 questionnaire before and one month after the intervention. The results showed that stress, anxiety and depression scores significantly reduced in the intervention group compared to the control group. Emotional regulation training with cognitive methods has significantly reduced the anxiety, stress, and depression of caregivers of patients with schizophrenia.
Objective: This study aims to develop and validate the stigma assessment tool for family member caregivers of patients with mental illness (SAT-FAM). Methods: This study was conducted in three phases: (1) explicate the concept of stigma towards family caregivers of patients with mental illness, (2) develop and iteratively optimise a preliminary version of the SAT-FAM, and (3) test the psychometric properties of the final version of the SAT-FAM. In phase 1, 14 family caregivers of patients with mental illness were interviewed for qualitative data collection and analysis. Four themes emerged: people's reaction and attitude, compassion with fear, rejection and loneliness, and confusion about mental illness. In phase 2, the first draft of the SAT-FAM with 38 items was developed. Based on the content validity index, each item was evaluated by 15 experts using a 4-point scale (1 = not relevant; 4 = very relevant). 15 family member caregivers of patients with mental illness were randomly selected to complete the face validity form on a Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree). In phase 3, 286 family caregivers of people with mental illness were recruited for exploratory factor analysis. Internal consistency (Cronbach's coefficient) and test-retest reliability were measured. Results: The final draft of the SAT-FAM comprised 30 items in four factors: shame and discrimination, social interaction, emotional reaction, and avoidance behaviours. The internal consistency (Cronbach's alpha) was >0.89 for all factors. The test-retest reliability among 30 family caregivers was good (0.76). Conclusions: The SAT-FAM is a valid and reliable self-report instrument for assessing stigma towards family caregivers of patients with mental illness. It enables a practical way of evaluating interventions aimed at reducing stigma.
To investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms. Cross-sectional study. In total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries. To test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire). Linear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P =.001; hours of supervision: β 1.7; P =.004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P =.002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P <.001; Euroqol Visual Analogue Scale: β −4.1; P =.003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders. Further studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.
Memory-related diseases often have a profound effect not only on the lives of individual people, but also on the lives of their families and others close to them. In this article, we introduce one national solution developed to help people who encounter such a situation. Regional ‘Muistiluotsi’ (memory pilot) centres provide expert assistance and support to people with memory-related diseases and their families. With its population of 5.5 million people, Finland has an estimated 193,000 people with a memory-related disease. Annually, approximately 14,500 people receive the diagnosis....
The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems’ deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.
Aim: The first episode of psychosis is a challenging time for both patients and those who care for them. Although literature on treatment is plentiful, literature on how to best support caregivers is more scarce. This review was undertaken to better understand the caregiver experience, determine which interventions most effectively alleviate their burden and examine which other factors may affect outcomes. Methods: Articles were retrieved from PubMed and OVID using the following search terms: first episode psychosis (FEP), schizophrenia, caregiver, intervention and burden in various combinations. Only peer‐reviewed articles germane to FEP caregiver experience and interventions written in English were included. Results: Caregivers can experience grief, guilt and anxiety during this time. While concerned for their loved one, their own lives take a back seat and their mental and physical health are adversely affected. Some are better prepared to cope and are typically warm, decisive, confident and optimistic. Their families are organized and flexible. Others are less prepared and are more likely to have poor self‐esteem, use avoidant coping strategies and be overly critical. Their families are controlling and have difficulty with communication and balance. These caregivers stand to benefit most from interventions. Conclusions: Effective interventions incorporate psychoeducation, problem solving strategies, peer support and clinician guidance. A higher level of interaction with facilitators and peers is associated with better results. Benefits include decreases in caregiver burden, depressive and anxious symptoms and feelings of shame and isolation. Although the literature has yet to isolate the key factors of a successful intervention, this review provides practical suggestions for clinicians and further illustrates the need for more research.
The aim of this study was to examine carer experiences with mental health services for individuals with dual disabilities in Australia. This qualitative study involved semi-structured interviews with nine parents with an adult offspring with an intellectual disability in 2016. Parents who had received a mental health service for their offspring within the past two years in Australia with adequate spoken English were included. Parents were asked four open ended questions relating to their experiences of mental health services for their offspring. Findings revealed parents reported more negative experiences with mental health services perceived to hold limited expertise in dual disabilities. They also reported difficulties in accessing appropriate services and highlighted the importance of collaboration and adjustments to suit individual needs of their child. The findings are discussed in terms of the implications for service provision and training for practitioners working with families with intellectual disabilities. Acknowledging the important role of carers as key informants and partners in treatment decision making is highlighted as necessary aligning services with best practice standards.
Family caregivers (FCs) of persons with mental illness (PMI) often experience caregiving burdens that contribute to poor mental health. As compared to European-American FCs, Asian-American FCs may experience greater caregiving burden due to an increased likelihood of cohabiting with PMIs. Yet, limited research exists on the caregiving experience of Asian-American FCs and on how self-care practice and social support mediate caregiver burden among FCs of PMIs. Using a cross-sectional mixed-method design this study explored the impact of caregiving burden on mental health outcomes among Chinese-American and European-American FCs. The quantitative data showed similar caregiving burden between the two groups and a partial mediation role for self-care practice on FCs' mental health. The qualitative data showed that FCs from the two groups utilized different types of social support. Findings suggest the need for mental health professionals to develop intervention programs to enhance self-care practices and social support for FCs when working with PMIs.
There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). Caregivers' mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients' health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers' levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.
Background: Most schizophrenia patients are supported by main informal caregivers at home in China. This study aims to investigate the further needs of social supports for main informal caregivers of schizophrenia patients and to analyze influencing factors on the awareness and utilization of social supports in Beijing. The results of this study could potentially act as reference for health professionals to implement appropriate and effective support programs. Methods: A mixed-methods approach was used in this study. Awareness, utilization and influencing factors of social supports for main informal caregivers were investigated using questionnaires in 6 urban districts in Beijing. Meanwhile, individual in-depth interviews with 10 main informal caregivers from the urban districts of Beijing were conducted to identify the caregivers' perspective on social supports and their further needs. Results: Quantitative results showed that although the government provided multi-channel resources for schizophrenia patients and their families, awareness and utilization of the resources such as rehabilitation and relevant subsidies were less than 10.0 and 5.0% respectively. Most caregivers in in-depth interviews expressed that they had negative experiences with respect to obtaining social supports, and they emphasized that more support would be needed in terms of financial support, respect, and rehabilitation institutions. Conclusions: The awareness and utilization of social supports are low for main informal caregivers of schizophrenia patients. More services and improved public attitudes are needed for schizophrenia patients and their caregivers.
Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support.; Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia.; Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process.; Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020.; Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations.; Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896.; International Registered Report Identifier (irrid): PRR1-10.2196/18538. (©Yu Yu, Tongxin Li, Shijun Xi, Yilu Li, Xi Xiao, Min Yang, Xiaoping Ge, Shuiyuan Xiao, Jacob Tebes. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 25.08.2020.)
Purpose This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities. Methods A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson's correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL. Results Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient's severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively. Conclusion Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.
Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.
Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.
Cognitive impairment (CI) is one of symptoms that adults with cancer frequently report. Although there are known factors that contribute to a patient's CI, these factors did not sufficiently explain its variability. Several studies conducted in patients with neurocognitive disorders have reported relationships between patients' cognitive function and caregiver characteristics, which are poorly understood in the context of cancer. This scoping review aims to map the literature on caregiver characteristics associated with CI in adults with cancer. We used the framework proposed by Arksey and O'Malley and PRISMA-Sc. Studies published in English by 2019 were searched through seven electronic databases. All retrieved citations were independently screened and eligibility for inclusion was determined by two independent authors. Ten studies met inclusion for this review with all of them showing significant associations between a patient's cognitive function and caregiver characteristics. Caregiver's mental health was the most commonly associated with a patient's cognitive function followed by family functioning, adaptation to illness, attitude toward disclosure of the illness, burden, coping and resilience, and demographic characteristics. These review findings suggest that enhanced information about CI in relation to caregiver characteristics will eventually provide the foundation for multifocal interventions for patients with impaired cognitive function. This scoping review identified caregiver characteristics that are associated with patients CI. These characteristics should be also assessed when health providers assess and treat CI of adults with cancer.
Background: The number of people with neurocognitive disorder is increasing, and the majority of them are cared for by informal caregivers in the community. Mental health problems are common among caregivers, however, professional support for them is often limited. Non-pharmacological self-help interventions, such as bibliotherapy, may improve mental well-being and has the potential for being integrated into clinical or social services. Objectives: To explore what types of bibliotherapy have been used for improving the mental well-being of informal caregivers of people with neurocognitive disorders, and the effect on mental well-being outcomes. Design: A systematic review and meta-analysis. Review methods: Six databases were searched for relevant articles on July 1, 2019. Clinical trial registries and the reference lists of included studies were also searched. Both randomized controlled trials and quasi-experimental studies were included. The Cochrane Collaboration risk of bias tool for randomized controlled trials was used to assess the quality of studies. Review Manager 5.3 was used to analyze data, standardized mean difference (SMD) and 95% confidence interval (CI) were used to estimate the pooled treatment effect. Random effects models were used for meta-analyses. Funnel plot was not performed due to the limited number of studies. This systematic review was registered at PROSPERO (CRD42019129152). Results: Nine randomized controlled trials with 1036 informal caregivers were included. Most of the included studies had some aspects of bias. Three types of bibliotherapy were used. Bibliotherapy had a significant pooled medium to large effect on reducing depression at Z = 1.99 (SMD = -0.74, 95%CI = -1.47 to -0.01, p = .05), however, the heterogeneity was high (I2 = 94%). For the subgroups, only the video-based bibliotherapy significantly reduced depression at Z = 2.78 (I2 = 83%, SMD = -2.11, 95%CI = -3.6 to -0.62, p = .005). Bibliotherapy had a significant small to medium effect on caregiver's self-efficacy for dealing with problem behaviours at Z = 2.44 (I2 = 0, SMD = 0.36, 95%CI = 0.05 to 0.67, p = .02), however, the effect on self-efficacy for obtaining respite was not significant (I2 = 0, SMD = 0.17, 95%CI = -0.16 to 0.49, p = .32). The effect on decreasing state anxiety was significant at Z = 2.30 (I2 = 22%, SMD = -0.22, 95% CI = -0.41 to -0.33, p = .02). Conclusions: Bibliotherapy showed positive effects on reducing depression, improving self-efficacy for dealing with problem behaviors and reducing anxiety among informal caregivers. The effects on reducing depression should be viewed with caution due to high heterogeneity. The effects on other mental well-being outcomes are inconclusive due to limited number of studies and this underscores the need for further research.
The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population.
It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden.
Background Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. Aims We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. Method We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. Results The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. Conclusions Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.
Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare.
Background Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers. This study evaluates the effectiveness of COPe-support to promote mental wellbeing and caregiving experiences in carers. Methods This study is a single-blind, parallel arm, individually randomized controlled trial (RCT) comparing COPe-support, with attention control. Both groups continue to receive usual care. COPe-support provides interactive web-based psychoeducation on psychosis-related issues, wellbeing-promotion and network support through forums. The attention-control is a non-interactive online information resource pack. Carers living in England are eligible if they provide at least weekly support to a family member or close friend affected by psychosis, and use internet communication (including emails) daily. All trial procedures are run online, including collection of outcome measurements which participants will directly input into our secure platform. Following baseline assessment, a web-based randomization system will be used to allocate 360 carers to either arm. Participants have unlimited access to the allocated condition for 40 weeks. Data collection is at three time points (10, 20, and 40 weeks after randomization). Analyses will be conducted by trial statisticians blinded to allocation. The primary outcome is mental wellbeing measured by Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), at 20 weeks. As well as an intention-to-treat analysis, a complier average causal effect (CACE) analysis will be conducted to estimate the intervention effect in participants who have accessed COPe-support content twice or more. The secondary objectives and analysis will examine other health and caregiving-related outcomes and explore mechanisms. In a process evaluation, we will interview 20% of the intervention arm participants regarding the acceptability of COPe-support. We will explore in detail participants' usage patterns. Discussion The results of this trial will provide valuable information about the effectiveness of COPe-support in promoting wellbeing and caregiving experiences in carers.
Purpose: This study was undertaken to develop a theoretical framework explaining family caregiving processes for older persons with cognitive impairment recovering from hip fracture surgery. Design and Methods: In this grounded theory study, data were collected in audio-recorded face-to-face interviews with 21 family caregivers. Among these caregivers, 14 cared for hip-fractured persons with cognitive impairment, and seven cared for those without cognitive impairment. Caregivers were interviewed five times after patients’ discharge: at 1 week and at 1, 3, 6, and 12 months. Data were analyzed by constant comparative analysis. Findings: The core category explaining the family caregiving process for hip-fractured persons with cognitive impairment was “resuming normal life during drip-like recovery.” This category captures the slowness of the recovery process, as slow as dripping water. During the early postoperative period, caregivers attempted to gain control of the postoperative situation, using various maintenance and improvement strategies to deal with the chaos in individuals and the family and to protect hip-fractured persons with cognitive impairment from further harm. The goal of recovery was to get back to their original life. Conclusions: Family caregivers of hip-fractured older persons with cognitive impairment needed to deal with more complex chaotic situations, exerted more efforts to administer safety measures, and required more time to achieve a stable life pattern. Clinical Relevance: Since postoperative recovery was perceived as extremely slow, family caregivers of hip-fractured older persons with cognitive impairment should be patient regarding recovery and be informed before hospital discharge of different strategies to resume normal life during postoperative recovery.
Purpose The aim of this study was to examine the psychometric properties of the Spanish version of the Experience of Caregiving Inventory (ECI-S), which is designed to assess the caregiver's appraisal of the impact of caring for a relative with a serious mental illness. Methods A cross-sectional study was conducted among 320 caregivers of a relative with an eating disorder to examine: (a) descriptive statistics; (b) internal consistency reliability; (c) the fit of the original ten-factor structure of the ECI through exploratory factor analysis, using a semi-confirmatory approach, for each subscale individually, and (d) concurrent validity. A total of 307 caregivers completed the scale. Results Reliability of the ECI subscales scores was acceptable (alpha = 0.63-0.89). Results replicated the original ten-factor structure of the instrument. The concurrent validity was supported by correlations of the ECI-negative subscale with psychological distress (GHQ-12, 0.43), and with depression and anxiety (HADS, 0.48 and 0.49, respectively). Conclusions The Spanish version of the ECI (ECI-S) demonstrated good psychometric properties in terms of validity and reliability that were similar to the original version. It is an acceptable and valid instrument for assessing the impact on family members of caring for a relative with an eating disorder and can be recommended for use in clinical settings in Spain.
Aims Studies on the frequency of caregiver involvement in representative inpatient samples are scarce. The aim of our study was to conduct a representative survey on caregiver involvement in routine inpatient care involving all three parties (patients, caregivers, psychiatrists). Therefore, we performed face-to-face interviews consisting of open-ended questions to gain a deeper understanding of when and how caregivers are involved in care treatment and to identify which topics are mainly discussed. Methods This cross-sectional survey included inpatients from 55 acute psychiatric wards across ten psychiatric hospitals, their treating psychiatrists and, when possible, their caregivers. In total, we performed semi-structured face-to-face interviews with 247 patients, their treating psychiatrists and 94 informal caregivers. Each psychiatrist named the next two to three patients to be discharged. After a patient had given informed consent, the interview was performed by a researcher. In addition, the psychiatrist and, when possible, the primary caregiver identified by the patient, were also interviewed. Results It was perceived by both patients and psychiatrists that contact between caregiver and psychiatrist had taken place in one-third of the patient cases. Predictors for psychiatrist-caregiver-contact were revealed in the patient's diagnosis (schizophrenia), a lower history of inpatient stays, and the respective hospital. According to psychiatrists the most frequent subjects of discussion with caregivers involved therapeutic issues and organisational and social-psychiatric topics (e.g. work, living and social support). Patients and caregivers stated that psychiatric treatment and the diagnostic classification of the mental illness were the most frequent topics of conversation. For all three groups, the most often cited reason for missed caregiver involvement was the subjective perception that a caregiver was not in fact needed. Conclusions Whether or not caregivers were contacted and involved during an inpatient stay strongly depended on the individual hospital. The frequency of involvement of caregivers can certainly be increased by changing processes and structures in hospitals. All three parties (patients, caregivers and psychiatrists) most often stated that the caregiver was not involved in the treatment because they thought it was unnecessary. Evidence demonstrates the positive effect of caregivers' involvement on the therapeutic process but also on the well-being of the caregiver, therefore it is necessary to increase awareness of this evidence among all three interest groups.
The purpose of the current descriptive qualitative study was to reveal experiences of family caregivers of individuals with chronic psychiatric illness. Family caregivers who provided care to 16 individuals with chronic mental illness were interviewed. Three themes emerged from the interviews: Illness Management, The Caregiver's World: Changes and Effects, and Coping From the Caregiver's Point of View. Understanding the experiences of family caregivers contributes to content development of family intervention programs.
Purpose This study was aimed at investigating the psychometric properties of the Family Crisis Oriented Personal Evaluation Scale (F‐COPES) for Turkish society, which assesses the coping skills of caregivers of individuals with chronic mental illnesses. Design and Methods The study was conducted with 153 family caregivers of patients with a chronic mental illness admitted to the inpatient and outpatient units of two university hospitals and İzmir Schizophrenia Solidarity Association. For the language validity, the translation‐back translation method was performed, for the content validity, expert opinions were obtained, for the construct validity, exploratory and confirmatory factor analysis was performed. For the reliability analysis, Cronbach α reliability coefficient was calculated and the test‐retest reliability analysis was performed. Findings The content validity index of the scale was 0.96. The Cronbach's α reliability coefficient for the overall scale was .80. Factor loadings of the subscales ranged between 0.56 and 0.69 for the Acquiring Social Support subscale, between 0.43 and 0.74 for the Reframing subscale, between 0.53 and 0.74 for the Seeking Spiritual Support subscale. The model fit indexes were as follows: χ2 = 176.369, df = 116, χ2/df = 1.52, RMSEA = 0.059, CFI = 0.90, IFI = 0.91, GFI = 0.88. Practice Implications The results of the present study show that the levels of psychometric properties of F‐COPES in Turkish society are acceptable. It is thought that it would be useful to use the F‐COPES in the assessment of coping behaviors of individuals who give care to patients with a chronic mental illness and that it can be used as measurement tool in studies to be conducted with caregivers of patients with a chronic mental illness to assess their coping skills.
Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings.
Researchers examined questions of caregivers for individuals with posttraumatic stress disorder (PTSD) by means of a) a content analysis and b) a thematic analysis of posts on an online peer support forum. A total of 292 question posts were analyzed. Content analysis categories were based on previous research and included question motivation (cognitive, emotional, and social) and content (symptoms, prognosis, medication/treatment, coping, support, and seeking reassurance). Three newly identified themes (PTSD behavior identification and response, interpersonal interactions with trauma survivors, and healthcare system concerns) were generated through the thematic analysis. These overarching themes regarding information needs, and their subcategories, are discussed in detail. This study provides a preliminary examination of the information needs of PTSD caregivers, offers suggestions for future research, and discusses implications for the healthcare system.
Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.
Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.
BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.
Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers’ experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes (“life in hell”, “chain to the feet”, and “black shadow of stigma”) and six sub-themes (“disrupted from the life”, “self-discrepancy”, “care bottlenecks”, “in the fence of restriction”, “society dagger” and “resort to secrecy”) emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers.
Due to inadequate human and financial resource support, the development of mental health services in Cambodia has been undertaken by various non-governmental organizations (NGOs). Schizophrenia is the most common functional psychotic disorder, causing severe and chronic symptoms, and the programs provided by the NGOs should have enhanced the quality of life (QoL) of patients and their caregivers; however, epidemiological research, which is a driving force behind the recognition of mental health as a global public health concern, is lacking for schizophrenia in Cambodia. This study therefore aimed to create QoL evaluation questionnaires available in Khmer (the Cambodian language) for patients with schizophrenia and family caregivers, and to identify the social determinants and predictors of their QoL. This cross-sectional study recruited 59 patients and 59 caregivers attending three clinics operated by two NGOs: the Transcultural Psychosocial Organization (TPO) Cambodia and the Supporters for Mental Health (SUMH) Cambodia. We conducted linguistic validation of the Schizophrenia Quality of Life Questionnaire 18-item version (S-QoL 18) and the Schizophrenia Caregiver Questionnaire (SCQ), then analyzed correlations between the QoL dimensions and socio-demographic factors. The main findings of this study were as follows: 1) the newly created Khmer versions of S-QoL 18 and SCQ are relatively good psychometric tools that are suitable for research to identify patients' and caregivers' needs to improve their QoL; and 2) engaging in paid work or being of the post-Khmer Rouge generation results in higher QoL for patients, but having low household economic status or being affected by chronic disease leads to lower QoL for family caregivers. These findings are useful for enabling community mental health professionals and aid organizations to create programs to lessen the patient and caregiver burden in Cambodia. Further research is necessary to develop practical projects that will improve patients' and caregivers' QoL in various clinical settings in Cambodia.
(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention.
Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term.
Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support.
Background: Mental illness is associated with misunderstanding and unfavorable attitude worldwide. The belief in its spiritual nature made traditional healers the main service consultants for mentally ill patients. The present study is a cross-sectional study conducted among 425 main family caregivers of mentally ill patients at Assiut University Hospital. The objective of the study was to assess the caregivers’ knowledge and attitude towards mental illness as well as their health-seeking behavior for their mentally ill relatives. Results: The studied caregivers had low scores of knowledge and attitude towards mental illness. Age of the caregivers, their education, and the type of first consulted care and aggressive behavior of the mentally ill relatives were the significant predictors of caregivers’ knowledge and attitude towards mental illness. The majority of caregivers (80.2%) sought advice for the first time from traditional healers. Traditional healers referred only 16.4% of caregivers’ mentally ill relatives to psychiatric care. Conclusion: The studied caregivers had poor knowledge and a negative attitude towards mental illness. Traditional healers were the main consulted care. So, increasing awareness of mental illness is highly recommended.
Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.
Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.
Background: Chronic disease is a leading cause of death globally, where inadequate fruit and vegetable consumption and inadequate physical activity are consistently implicated as key contributing risk factors for such diseases. People with a mental health condition are reported to experience a higher prevalence of such risks and experience an increased morbidity and mortality from resultant chronic disease. Despite guidelines identifying a need for services accessed by people with a mental health condition to provide care to address such health risk behaviours, sub-optimal care is frequently reported suggesting a need for innovative strategies to increase the provision of physical health care. An exploratory study was conducted to examine: 1) family carers' expectations of care provision regarding fruit and vegetable consumption and physical activity by health and community services for people with a mental health condition; 2) carer's own health risk behaviour status and perceptions of the influence of the health risk behaviours on mental health; and 3) possible associations of socio-demographic, clinical and attitudinal factors with carer expectations of care provision for fruit and vegetable consumption and physical activity. Methods: Family carers (n = 144) of a person with a mental health condition completed a cross-sectional survey. Participants were members of a mental health carer support organisation operating in New South Wales, Australia. Results: A high proportion of participants considered care for fruit and vegetable consumption and physical activity respectively should be provided by: Mental health hospitals (78.5, 82.7%); community mental health services (76.7, 85.9%); general practice (81.1, 79.2%); and non-government organisations (56.2, 65.4%). Most participants perceived adequate fruit and vegetable consumption (55.9%), and physical activity (71.3%) would have a very positive impact on mental health. Carers who perceived adequate fruit and vegetable consumption and physical activity would have a positive impact on mental health were more likely to expect care for such behaviours from some services. Conclusions: The majority of participants expected care for fruit and vegetable consumption and physical activity be provided by all services catering for people with a mental health condition, reinforcing the appropriateness for such services to provide physical health care for clients in a systematic manner.
Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p<0.001), depression (U=32, p<0.001) and poor quality of life (U=84.5, p<0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.
National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.
Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.
Aim: The provision and implementation of early intervention for psychosis services (early intervention services [EIS]) has received increasing attention over recent years. Maximizing engagement with EIS is of clinical and economic importance, and exploring the experiences of those who access EIS is vital. Although research has been conducted exploring the experiences of engaging with EIS from both a service user and carer/family member point of view, these data have not been systematically collated to generate new understanding. The primary aim of this study is to review, critically appraise and synthesize qualitative findings relating to the experiences of service users and/or carers and family members engaging with EIS.; Methods: Four databases were systematically searched. Studies were analysed using an inductive thematic analysis approach, within a critical realist epistemological framework. Studies were critically appraised using the critical appraisal skills programme tool.; Results: Fourteen papers were identified for inclusion. Three main themes were identified: the importance of a personal relationship with an EIS staff member, the impact of this relationship and consideration of life after EIS. The importance of a strong relationship with EIS staff was the most prominent theme throughout the papers reviewed.; Conclusions: The quality of the therapeutic relationship with at least one EIS staff member was the single most important factor in determining whether the experience of accessing EIS was a positive or negative one. The majority of the studies reviewed were conducted in the United Kingdom or Australia. Therefore, more research across countries is needed to understand transferability of findings.
Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.
Introduction: Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one.; Aim: The purpose of this study is to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis.; Method: Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted.; Results: We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; effective coping strategies.; Implications For Practice: These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behavior changes, and navigate care to support people with first episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centered intervention in addressing caregivers' needs in education, increasing awareness of early psychosis, and fostering effective coping strategies.
Introduction: Around 60% of carers of relatives with mental health problems report feeling unrecognised by professional health care and many report a lack of engagement, shared decision making and information sharing. There is a paucity of research examining these issues for carers who are also mental health professionals.; Aim: This was an exploratory study to (i) explore the extent of this role among health service staff, (ii) gather an indication of the issues faced by carers when interacting with the health system, and (iii) test the feasibility of conducting research.; Method: Mental health professionals in mental health services completed an online survey that assessed the frequency, content and satisfaction of the experiences of carers.; Results: The sample comprised 453 mental health professionals (74% female), 52% being carers. Half of carers reported having therapist contact and 25% were satisfied with the contact. Negative experiences were related to Information, Decision making and Continuity of care.; Discussion: There was a high frequency of mental health professionals who were carers. The majority were dissatisfied and this was primarily in relation to communication with services.; Implications For Practice: Improving information sharing through training of staff and identification of the system barriers is likely to enhance experiences for service users and families.
Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads.
Objective: To explore the impact of resiliency factors on the longitudinal trajectory of depressive symptoms in patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) and their family caregivers.; Materials and Methods: Patients (N = 102) and family caregivers (N = 103) completed self-report assessments of depressive symptoms (depression subscale of the Hospital Anxiety and Depression Scale; HADS-D) and resiliency factors (i.e., mindfulness and coping) during Neuro-ICU hospitalization. The HADS-D was administered again at 3 and 6 months after discharge. The Actor-Partner Interdependence Model (APIM) was used to assess patient-caregiver interdependence.; Results: Baseline rates of clinically significant depressive symptoms were high among patients (23%) and caregivers (19%), and remained elevated through 6-months. Higher depressive symptoms predicted higher levels of symptoms at the subsequent timepoint (ps < 0.05). Higher baseline mindfulness and coping were associated with lower levels of depressive symptoms at all timepoints (ps < 0.001). APIM analysis showed that one's own higher baseline mindfulness was associated with concurrent levels of depressive symptoms in a partner (p < 0.05).; Conclusions: Depressive symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months. Mindfulness is protective against depressive symptoms and interdependent between patients and caregivers. Early, dyadic, mindfulness-based interventions may prevent the development of chronic depression in both patients and caregivers.
Evidence suggests that young carers are less likely to complete or do well in secondary school compared with young people without caring responsibilities. Positive engagement at school is an important correlate of school outcomes, yet quantitative evidence on the factors contributing to young carers’ school engagement is lacking. Drawing on the results of a national school-based survey of Australian children aged 8–14 years (N = 5220) in which about 9% of the sample identified as carers (N = 465), this paper compares the school engagement of non-carers, young carers of a family member with disability, and young carers of a family member with a mental illness or using alcohol/drugs. The analysis shows that school engagement of young carers of people with disability is not significantly different from that of non-carers, but school engagement among young carers of people with a mental illness or using alcohol/drugs is significantly lower. Among this latter group, young carers who are themselves with disability report particularly low levels of engagement. The study concludes that improved support focused on young carers of people with a mental illness or using alcohol/drugs is needed to improve their school engagement.
Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.
Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.
Purpose: The aim of this study is to determine the perceptions of both individuals with severe mental illness and their family caregivers regarding the physical health status of patients. Design and methods: A descriptive qualitative design was implemented, and 11 individuals with severe mental illness and 12 caregivers were analysed. Findings: Two main themes emerged as a result of the content analysis: a "physical health‐related barriers" theme and a "need for better physical health" theme. Practice implications: Patients and their family caregivers experience a number of barriers and difficulties related to maintaining and improving physical health. Psychiatric nurses should recognize these barriers and assist in empowering both patients and their family caregivers to overcome them.
An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers.
We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.
Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare the feasibility and efficacy of a web‐ and workshop‐based education intervention for caregivers of adults with eating disorders. Methods: Psychoeducation was provided to caregivers, who were randomly assigned to a web or workshop condition. Independent samples t tests were conducted to analyse the between‐group effect sizes for intervention condition with regard to change over time. A random selection of participants from each intervention provided qualitative feedback about their experiences. Results: Overall, participants reported positive experiences in both education interventions. From baseline to the end of intervention, small between‐group effect sizes were observed for changes in caregiver accommodation, problem‐solving abilities, the quality of psychological health, and the quality of social relationships, favouring the web‐based intervention, and changes in expressed emotion in the family context, caregiver burden, perceived stress, and the quality of the environment, supporting the workshop intervention. Conclusions: There was a difference in initial feasibility of the web intervention. A future large‐scale trial of these interventions is supported by the results of this feasibility study.
Purpose: This study aimed to examine the quality of family‐centered care perceived by primary family caregivers and its influencing factors in mental healthcare practice. Design: A cross‐sectional, correlational study. Methods: A convenience sample of 121 mental health nurses and 164 primary family caregivers of patients with schizophrenia was recruited from acute psychiatric wards and chronic psychiatric rehabilitation wards in three psychiatric hospitals in Taiwan. Structured questionnaires for mental health nurses were designed to examine nurses' attitudes toward schizophrenia and the importance of families in nursing care. Primary family caregivers were assessed to determine their perceptions of quality of family‐centered care. At least one primary family caregiver of patients was matched to a nurse who took major responsibility for the patient during the hospitalization. Data were analyzed with descriptive statistics, Pearson's product‐moment correlations, independent t‐test, one‐way analysis of variance, and stepwise regression analyses. Results: Quality of family‐centered care perceived by primary family caregivers regarding the provision of general and specific information, as compared to enabling and partnership, coordinated and comprehensive care, and respectful and supportive care, was relatively inadequate. Younger and more educated primary family caregivers, having relatives with schizophrenia in acute wards, less supportive nurses' attitudes toward schizophrenia, and the importance of family in nursing care were correlated with poor primary family caregivers' perceptions of quality of family‐centered care. Nurses' supportive attitudes toward schizophrenia and chronic psychiatric rehabilitation wards where patients received care were key factors in determining better quality of family‐centered care. Conclusions: Findings provide a platform for the development of effective continuing education and training programs to equip mental health nurses with supportive attitudes toward mental illness and an integration of the family in nursing care, which will ultimately improve mental health care for families experiencing mental health problems. Clinical Relevance: Efforts in professional training to address stigma and encourage a family‐centered approach into recovery‐oriented practice for practicing mental healthcare providers, including mental health nurses, are recommended.
Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.
Objective: To examine the factors associated with caregivers' burden in individuals providing care to family members suffering from serious mental illness. Methods: This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL). Results: The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < 0.01), less educated (t =5.48, p < 0.01), lived in rural area (t = -7.99, p < 0.01), had lower monthly income (t = -4.95, p < 0.01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income. Conclusion: The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers' wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring.
There are currently very few studies exploring the area of mental health in the Philippines. The topic on mental illness remains widely stigmatized that even the concerns of the caregivers of the mentally ill stay unexplored on the background. This qualitative study aims to help families, mental health professionals, and the general community, understand the different coping and support needs of caregivers of the mentally ill. The researchers employed a phenomenological method of identifying the coping and support needs of these caregivers whose mentally ill family members were admitted in a Mental Health Facility in Leyte, Philippines. Data collection was made through in-depth interviews with carers/caregivers/relatives of five (5) mentally ill persons. Library and internet desk research in its related literature were also employed. Results of the study revealed two major themes, namely 1) coping strategies of caregivers of the mentally ill, and, 2) support to caregivers of the mentally ill. In the theme of coping strategies of caregivers of the mentally ill, three sub-themes emerged, namely 1.1) religious practice, 1.2) being productive, preoccupied and proactive, and 1.3) acceptance and resolve. Several support programs and services such as provision of mental health education and counseling regarding facts about the illness, its treatment and management, and leniency on watcher requirements during hospital admission are among the recommended support needs identified by the caregivers of the mentally ill.
Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.
The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.
Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372.
Background Little is known about the relationship between changes of family structure for people with severe mental illness (SMI) and treatment status of SMI during a period of sustained rapid socioeconomic development. This study aimed to explore the relationship between changes of family structure and treatment status of people with SMI in a 21-year longitudinal study in a rural area of China. Methods Epidemiological surveys of mental disorders were conducted in May, 1994, and October, 2015, in the same six townships (total population 170 174 in 2015) in Xinjin county, Chengdu, which is a representative middle-income rural county in southwest China. The six townships were randomly selected from all 12 townships of Xinjin county in 1994. The surveys consisted of two steps: (1) screening procedures for psychosis (face-to-face interviews with the head of each household together with key informant interviews), household by household; and (2) psychiatric interviews of people aged 15 years and older, to identify those with SMI (including schizophrenia, bipolar disorders, and major depressive disorder) according to the International Classification of Mental and Behavioural Disorders-10 (ICD-10) criteria. The two surveys were approved by the university human research ethics committees. Findings The number of people aged 15 years and older who were identified to have SMI was 711 and 1042 in 1994 and 2015, respectively. The mean number of family members was significantly lower in 2015 (3·0 [SD 1·5]) than in 1994 (3·4 [1·5], p<0·0001). Compared with people with SMI in 1994, those with SMI in 2015 had a significantly higher rate of living alone (13·7% vs 9·9%, p<0·013) and without caregivers (15·6% vs 8·4%, p<0·0001). There was a significantly lower rate of parents as caregivers in 2015 than in 1994 (13·5% vs 17·9%, p<0·011). The rate of low family economic status (less than the population mean) for people with SMI was significantly higher in 2015 than in 1994 (p<0·0001). Fewer family members (included in the same family hukou) was significantly associated with low family economic status (p=0·023), and low family economic status was significantly associated with poor treatment status (p=0·015). Interpretation The family structure and status of people with SMI has changed markedly during the rapid socioeconomic development from 1994 to 2015 in rural China. Fewer family members, fewer family caregivers and relative poverty have gradually become major challenges for families who care for people with SMI. How to improve care for people with SMI should be important if targets for Healthy China 2030 are to be met. Community mental health care, the precise poverty alleviation strategy, and the culture-specific family intervention programme should be crucial for comprehensive community mental health care and for improvement of the treatment and recovery of people with SMI in the community. Funding The survey in 1994 was supported in part by the China Medical Board of New York (92-557). The survey in 2015 was supported in part by the Seed Funding Programme for Basic Research (2014–2016), Seed Funding Programme for Applied Research (2014–2016), Contemporary China Strategic Research Theme (2014–2016), Small Project Funding (2014–2016), and Mental Health Research in Chengdu, China (department matching fund, 2015–2017).
Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.
In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.
Background: Existing research suggests that eHealth interventions targeting family carers of individuals with long-term illness offer a promising approach to care delivery. In particular, digital psychoeducational interventions with interactive psychosocial support are well-received with high rates of satisfaction and acceptability. However, development of such interventions for psychosis carers is lacking. We developed a multi-component eHealth intervention specifically for carers of individuals affected by psychosis, called COPe-support (Carers fOr People with Psychosis e-support). Objective: Using mixed methods to evaluate usability, system heuristics and perceived acceptability, we conducted a usability study to establish the suitability of the intervention prototype for the target user group. Methods: Twenty-three carers were recruited to the study and participated in a think-aloud test or a remote online trial of the intervention. Qualitative feedback, post-use System Usability Scale (SUS) scores, and real-world usage data collected from the tests were analysed. These were also supplemented with heuristic evaluation data provided by an independent eLearning technology expert. Results: Participants evaluated the intervention content as useful and helpful, and indicated that the system had satisfactory usability with a mean SUS score of 73%, above the usability quality benchmark threshold. Study results identified some minor usability issues, which were corroborated with the eLearning expert’s heuristic evaluation findings. We used these results to refine the COPe-support intervention. Conclusions: The usability study with end-users and service providers identified real-life usage and usability issues. The study results helped us refine COPe-support and its delivery strategy before its launch as part of a large-scale clinical trial.
Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.
PURPOSE OF REVIEW: To review the evolution of family support movement for schizophrenia in India and to report perspectives of family caregivers who are running family support groups across the country in the backdrop of recent legislations in India. RECENT FINDINGS: Family support movement started in the 1990s, mostly by family caregivers independently in multiple cities across the country. Apart from periodic support meetings, they have successfully influenced recent legislations to address the felt needs of families. Mental health professionals need to gain skills to work collaboratively with assertive family caregivers to develop services to support those diagnosed with mental illness. Though there is a need for such movement, funding is poor and very few caregivers of persons with schizophrenia are forthcoming to participate. The formation of national federation with government and non-government partnership could help give the required impetus to the family support movement for persons with schizophrenia in India.
Caregiving experiences matter for caregivers’ own wellbeing, but few studies link caregivers’ burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers’ experiences shape recipients’ mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers’ appraisals shape recipients’ subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members.
Background: Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim: This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods: Persons with schizophrenia (N1 = 300) and their family caregivers (N2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results: The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p <.01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p <.05). In the final model, instrumental social support was positively associated with social interaction (p <.001) and increased subjective social support (p <.05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms (p <.01), which was related to a lower level of caregiver burden (p <.001). Conclusion: This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.
Background: Little is known about the impacts of schizophrenia on different types of caregiving burden. Aim: This study aims to examine how the severity of schizophrenia, social functioning and aggressive behavior are associated with caregiving burden across different kinship types. Method: The analytic sample included 300 dyads of persons with schizophrenia and their family caregivers in Xinjin, Chengdu, China. The 10th edition of the International Classification of Diseases (ICD-10) was utilized to identify the patients, whose symptom severity, social functioning and aggressive behavior were measured. Caregiving burden was estimated using the Burden Scale for Family Caregivers–short (BSFC-s). Results: A higher level of burden was significantly associated with female caregivers, larger family size, lower income, worse symptoms, poorer functional status and more aggressive behaviors. Parent caregivers showed greater burden if the patients had better functioning of social interest and concern or more aggression toward property. Mother caregivers showed greater burden than fathers. Spouses tended to perceive greater burden if the patients had better marital functioning, poorer occupational functioning or more aggressive behaviors toward property. Patients attacking others or a father with schizophrenia was related to a higher burden of child caregivers. A heavier burden of other relatives was correlated with patients’ more verbal aggression and self-harm. Conclusion: This study shows the distinct impacts of disease-related factors on the caregiving burden across different kinship types. Our findings have implications for health-care professionals and practitioners in terms of developing more targeted family-based or individualized intervention to ameliorate burden according to kinship types and deal with behavioral and functional problems in schizophrenia.
(1) Background: The aim of this research was to analyze factors associated with quality of life (QoL) and marital satisfaction in married family caregivers of patients with mental disorders. (2) Methods: A cross-sectional study was conducted in all community mental health services in Goiania municipality, Brazil, in 2016–2017. Married family caregivers of patients with severe and persistent mental disorders were recruited and their QoL and marital satisfaction was assessed by using the World Health Organization Quality of Life Instrument Abbreviated version (WHOQOL-BREF) and Marital Satisfaction Scale. Multiple linear regressions were performed to identify factors associated with QoL and marital satisfaction. (3) Results: For 163 family caregivers, the psychological and environmental QoL domains presented the best and the worst scores, respectively. Factors independently associated with better QoL for caregivers were male caregiver, the younger age of a caregiver, >8 years of schooling, ≥5 years as a caregiver who performed physical activities, caregiver without chronic disease, and no patient’s crisis in the last 30 days. Factors independently associated with marital satisfaction of the caregiver were male caregiver, caregiver with >8 years of schooling, caregiver who received support by relatives to care for the patient, caregiver who performed physical activities, no patient’s crisis in the last 30 days, and patient hospitalization in the last six months; (4) Conclusions: The main predictor for marital satisfaction was support by relatives, and for QoL it was no patient’s crisis in the last 30 days.
Background: Understanding the explanatory models of family caregivers is particularly important in interdependent contexts like India, where they often play a significant role in the help-seeking behaviours, treatment decision-making and long-term care of those diagnosed with mental illness. Aims: This study was planned to explore the diversity of explanatory models among family caregivers at a centre for recovery-oriented rehabilitation services in South India. Methods: The sample for this study included 60 family caregivers of patients referred to Psychiatric Rehabilitation Services within a tertiary-care hospital for mental health and neurosciences. Bart’s Explanatory Model Inventory, including a semi-structured interview and a checklist, assessed the family caregivers’ explanatory model of distress on five domains: identity, cause, timeline, consequences and control/cure/treatment. Results: The results indicated the coexistence of multiple causal explanatory models including psychosocial, supernatural, situational and behavioural contributors. While 36.7% of the caregivers displayed two explanatory models, 33.3% of the caregivers held three explanatory models and 16.6% of the caregivers endorsed four explanatory models. Caregivers shared their concerns about varied consequences of mental illness but less than half of them were aware of the name of the psychiatric disorder. While they accessed various forms of treatments and adjunctive supports such as prayer, medication was the most frequently used treatment method. Conclusions: The findings have implications for collaborative goal setting in recovery-oriented services for persons with mental illness and their families.
Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced.
Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia.
Background: Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims: The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods: Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test (n = 60) and compared with the post-test intervention group (n = 32) (chi-square tests of linear-by-linear association). Results: Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions: Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted.
Patient involvement (shared decision making ) and caregiver involvement (family involvement, etc.) are mostly seen as different aspects of care, and efforts to integrate them are limited. This Open Forum posits that both approaches are critical and that caregiver involvement should always be considered during shared decision making, potentially as an integral component. The authors argue that the two approaches can overlap and work synergistically rather than antagonistically. When caregiver involvement is integrated into shared decision making, caregivers may assume any of a variety of roles and need to develop certain competencies to better engage in decision making.
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.
People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.
Background: Family carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing 'at risk' behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change. Methods: A cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables. Results: Inadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving 'at risk' behaviours (56.3-89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3-12.9, p =.02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2-5.7, p =.02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1-7.9, p =.03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3-20.5, p =.02) compared to those not currently in the workforce. Conclusions: Results suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings.
Families are considered as primary sources of care for individuals suffering from mental disorders. However, one of the major stresses in families is the infliction of a family member with mental illnesses causing dysfunction in health dimensions or generally their quality of life. Currently, most experts believe that religion can affect physical health and other aspects of human life. So, the aim of this study was to investigate “the relationship between care burden and religious beliefs among family caregivers of mentally ill patients.” This cross-sectional study was carried out in Iran on 152 families with mentally ill patients who were hospitalized in psychiatric wards. The sampling method was nonprobability and consecutive sampling method. The data collection instruments included a demographic characteristic questionnaire, Religious Beliefs, and Zarit Care Burden Questionnaires. The mean score for care burden was 30.99 (SD = 16.45). 5.9% of the participants reported a low level, and 39.5% experienced a moderate level of care burden. Moreover, the mean score for religious beliefs was 115.5 (SD = 13.49), and majority of the participants (70.4%) were endowed with strong religious beliefs. There were no significant associations between care burden and intensity of religious beliefs among the study samples (P = 0.483). Considering the results of this study indicating experience of moderate-to-high levels of care burden in families with mentally ill patients, it is recommended to consider such families and their religious beliefs as contributing factors in coping with challenges of mental disorders.
Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.
Purpose: The present study examined the degree to which loneliness mediated the influence of negative (social constraints) and positive (emotional support) relationship qualities on the global mental health of advanced gastrointestinal (GI) cancer patients and their family caregivers. Methods: Fifty patient-caregiver dyads completed measures assessing social constraints (e.g., avoidance, criticism) from the other dyad members, emotional support from others, loneliness, and global mental health. Structural equation modeling was used to examine individual models, and Actor-Partner Interdependence Mediation Modeling was used to examine dyadic associations. Results: Individual path analyses for patients and caregivers demonstrated that emotional support had a significant indirect effect on mental health through loneliness (Bs = 0.32 and 0.30, respectively), but no associations were found between social constraints and mental health. In dyadic analyses, participants' loneliness and mental health were not significantly related to their partner's emotional support, loneliness, or mental health (Bs = - 0.18 to 0.18). Conclusions: Findings suggest that for advanced GI cancer patients and caregivers, emotional support from others alleviates feelings of loneliness, which may lead to better mental health. However, the benefits of emotional support appear to be primarily intrapersonal rather than interpersonal in nature. Additionally, participants endorsed low levels of social constraints, which might explain their lack of relation to loneliness and mental health. Continued examination of interdependence in social processes between cancer patients and caregivers will inform intervention development.
Background Providing unpaid support to family and friends with disabling health conditions can limit a carer’s capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically. Methods This study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers. Results Significantly more mental health carers were not employed (42.3%, 95% CI: 36.6–48.1) compared to non-carers (24.0%, 95% CI: 23.5–24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8–22.8, vs. non-carers: 11.7%, 95% CI: 11.3–12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5–28.7, vs. non-carers: 15.7, 95% CI: 15.1–16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6–39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2–38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1–21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35–54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed. Conclusions These results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.
Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed. Carers from culturally and linguistically diverse communities experience considerably poorer culturally oriented practices in mental health services. Cultural responsiveness is a relevant framework for social work practice with carers and their relatives with mental illness who are from culturally and linguistically diverse communities.
Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed. Social workers can better utilise the biopsychosocial approach in working with young people with first episode psychosis and their carers. Holistic care using a biopsychosocial approach should support individuals and their families in both physical and mental health. Social workers can further support the health and wellbeing of carers by collaborating with medical and other allied health colleagues within multidisciplinary teams, and by referring carers with physical health problems to general practitioners.
Objectives: To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden.; Design: Cross-sectional survey.; Setting: All Australian States and Territories.; Participants: Responses were received from 231 Australian mental health caregivers.; Main Outcome Measures: The Involvement Evaluation Questionnaire was used to assess caregiver burden.; Results: Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving.; Conclusion: Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.
Objective: To determine if family caregiver involvement in interventions with patients with delirium improves patient outcomes.; Methods: A search of three databases (Medline-Ovid, CINAHL and Embase) was conducted. Eligibility criteria included adult patients and involvement of family caregivers in any delirium intervention. Data were extracted from each study (determined by PEDro scale) using a customised form. A meta-analysis was undertaken which compared the length of hospital stay and duration of delirium. PROSPERO registration number is CRD42017077650.; Results: Five studies involving 505 participants published over a 5-year period were suitable for inclusion. Low-level evidence demonstrated family caregiver involvement may reduce caregiver's anxiety and hospital staff viewed administration of education to family caregivers as efficient. Meta-analysis suggested family interventions reduce length of hospital stay for patients with delirium. It remains unclear if it affects the duration of delirium.; Conclusion: Family caregivers providing interventions to patients with delirium can improve patient outcomes.
Aim: Brief psychoeducation for families of psychotic patients has been shown to significantly increase family members' knowledge of the disorder. This increase is associated with reductions in relapse and rehospitalization. The aim of this study was to assess the effectiveness of brief psychoeducation about schizophrenia to caregivers of patients in early phases of psychotic disorders in Yogyakarta, Indonesia.; Methods: This study was a prospective, randomized trial with 2 parallel groups. Subjects were patients in the early phase of psychotic disorders and their respective caregivers. Inclusion criteria included a diagnosis of acute and transient psychotic disorders, schizophrenia, schizoaffective disorder or delusional disorder. Participants were randomly assigned to either control or intervention groups by means of paired simple randomization. A brief psychoeducation was conducted for both the patients and caregivers. The interventions were conducted in 4 interactive sessions, once per week. Effectiveness was measured using standardized instruments before the intervention, and at 1 and 6 months post-intervention. Assessment instruments included the Knowledge of Psychosis (KOP), the Compliance and Relapse Assessment, the Brief Psychiatric Rating Scale and the Positive and Negative Symptoms of Schizophrenia scale.; Results: Interventions improved KOP scores significantly in the intervention group. The intervention group had increased regularity of follow-up with health providers and improved compliance. No statistically significant difference in relapses/rehospitalization was observed.; Conclusions: This study demonstrated that brief psychoeducation with caregivers of patients with early phase psychosis was feasible in our setting, significantly improved caregivers' knowledge, and resulted in improved regularity of contact with health providers and compliance with pharmacotherapy.
Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.
Family caregivers of people with substance abuse are exposed to psychological problems that diminish their life quality and satisfaction. The purpose of this study was to diagnose the efficacy of quality-of-life intervention on stress and life satisfaction of family caregivers of individuals with substance use problem. This is a randomized controlled trial conducted on 80 family caregivers of individuals with substance use problem in the process of withdrawal who were referred to a psychiatric center in southeastern Iran (2018). The intervention group received seven sessions of quality-of-life group counseling every other day based on predetermined content. Twelve weeks post-intervention, data were collected from the control and intervention groups using the Depression Anxiety and Stress Scales (DASS-21) and the Satisfaction with Life Scale (SWLS). The results were analyzed through statistical tests. After group counseling based on quality of life, the mean stress score in the family caregivers of the intervention group (11.50 ± 4.36) was significantly lower than in those of the control group (14.67 ± 4.93) (p = 0.003). Also, in the posttest, the mean score of life satisfaction in the intervention group (24.75 ± 4.28) was significantly higher than that of the control group (19.57 ± 7.33) (p = 0.001). Group counseling based on quality of life exerted a significantly positive impact on reducing the severity of stress and improving life satisfaction among family caregivers of individuals with substance use problem. Therefore, it is highly recommended that healthcare service providers incorporate this counseling approach in substance use withdrawal programs so as to increase the well-being and mental health of family caregivers.
Background and objectives: Severe mental disorders require informal care, usually provided by family members of the affected. The aim of the study is to examine the burden of informal caregiving for individuals with schizophrenia and affective disorders prior to hospital admission in Bulgaria. Methods: The study has an observational, cross-sectional, retrospective design. Individuals with schizophrenia and affective disorders and their caregivers are evaluated upon the patients’ admission for inpatient treatment. The objective and subjective consequences of providing informal care are evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure. Its factor structure and determinants of high burden of care are examined. Results: 117 individuals with mental disorder and 117 caregivers are evaluated, dichotomized in two groups according to the patient's diagnosis. The time spent in informal care is 5.7 hours per day (SD = 2.9) for schizophrenia and 3.9 hours per day (SD = 3.0) for affective disorders, p =.002. The mean score on the BAS is 44.7 (SD = 11.0) and 42.0 (SD = 12.8) respectively, p =.221. A common pattern of the burden with a 5-factor solution explaining 66% of the variance is presented, including the factors Limitations, Conflicts, Guilt, Trap, and Stigma. Contributors for the increase in the BAS are stigma (p <.001), history of threats (p =.014), supervision for disturbing behaviour (p <.048), younger age of the caregivers (p =.043), spouses/partners to the patients (p <.001), less social contacts (p =.017) and provision of informal care on a daily basis (p =.027). Conclusions: The caregivers of individuals with schizophrenia and affective disorders experience considerable objective and subjective burden.
Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.
Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.
Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.
Background: Burden of caregivers of people with mental illness (PWMI) is considered to be a negative impact of the care provided by the family to the patient. However, little is known about the extent of the burden among caregivers of PWMI in Ethiopia. The aim of this study, therefore, is to assess the magnitude and associated factors of burden among caregivers of PWMI at Jimma University Medical Center, 2017.; Methods: Institution-based cross-sectional study design was employed among 406 conveniently selected caregivers of PWMI and interviewed using a structured questionnaire. Family burden interview schedule (FBIS) was used to assess burden of caregivers. Bivariate and multivariable linear regression analyses were performed to determine the predictors of burden among caregivers.; Results: Nearly two-thirds [264 (65.0%)] of the participants were male with a mean age of 38.45 ± 12.03 years. The mean score for burden among caregivers on family burden interview schedule was 23.00 ± 10.71. Age of the caregivers (β = 0.18, p < 0.001), being female caregiver (β = 2.68, p < 0.01), duration of contact hours with the patient per day (β = 0.74, p < 0.001), perceived stigma by the caregiver (β = 0.47, p < 0.001), and providing care for patients who had history of substance use in life (β = 1.52, p < 0.05) were positive predictors of higher burden among caregivers. Whereas, caregivers' income (β = 7.25, p < 0.001), caregivers who had no formal education (β = 4.65, p < 0.01), and caregivers' social support (β = 0.78, p < 0.001) were negatively associated with higher burden among caregiver.; Conclusion: Caregivers of people with mental illness experience enormous burden during providing care for their relatives with mental illness. Therefore, creating community awareness and targeted interventions in the area of treatment access, stigma, financial, and other social support for people with mental illness and their caregivers would help out to reduce these burdens.
Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:
Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.
Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover.; Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services.; Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis.; Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified.; Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.;
Aim: The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving.; Methods: Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions.; Results: Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving.; Conclusions: This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving.