Race-Related Differences in the Experiences of Family Members of Persons with Mental Illness Participating in the NAMI Family to Family Education Program

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families’ caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.     

Some Pitfalls for Effective Caregiving in a War Region

Abstract

This article presents an overview of issues and concerns which can negatively impact the effectiveness of caregiving in a war zone by traumatization of caregivers, conflicting agendas and prejudice of foreign mental health organizers and trainers.     

Wealthy families and their drug abusing adolescents

Abstract

Researchers have hypothesized that providing care to an elderly relative can negatively affect marital relationships of caregivers. However, no research has directly examined this issue. This study explored the impact of elderly depression and impairment, mental caregiving, caregiver/elderly person relationship closeness, spouse burden, and caregiver burden on caregiver marital happiness (and adjustment) in 90 multigenerational families. No significant relationship was found between these variables and caregiver marital adjustment. A causal model involving the six independent variables and caregiver marital happiness was developed and tested. Elderly depression and caregiver burden directly affected level of caregiver marital happiness. The other four independent variables affected caregiver marital happiness indirectly through caregiver burden. Implications for marriage and family therapists are discussed.     

Informal Caregiving to Persons with AIDS in the United States: Caregiver Burden Among Central Cities Residents Eighteen to Forty-Nine Years Old

Characteristics and caregiving experiences of friends and family members caring for people with AIDS (PWAs) were examined. Based on a probability sample of informal AIDS caregivers ages 18–49 living in central cities of the United States (n = 260), analyses were conducted to (a) identify the sociodemographic characteristics of young central city caregivers; and (b) examine the effects of caregiver characteristics (relationship to PWA, gender, race/ethnicity, income, sexual orientation, HIV status, perceived susceptibility), and level of objective caregiving demands, on subjective caregiver burden. Results indicate that the largest group of caregivers in this age category are male friends of the PWA—a group not typically found among caregivers to persons with other types of illnesses. In general, gay or bisexual caregivers, caregivers who have traditional family ties to the PWA, men relative to women, and lower income caregivers, report the greatest burden. While level of caregiving demands represents the most influential predictor of caregiver burden, white and male caregivers experience greater burden, independent of level of involvement and other caregiver characteristics. Receiving instrumental support with caregiving buffers the impact of high objective demands on subjective burden.     

The burden of filial piety: A qualitative study on caregiving motivations amongst family caregivers of patients with cancer in Singapore

Objective. This study explores (1) the motivations and challenges facing family caregiving for cancer in Singapore and (2) suggests a possible framework to guide culturally sensitive future work on caregivers.

Design. Twenty caregivers of patients being treated for cancer at a public hospital in Singapore were interviewed. A semi-structured interview format and inductive thematic analysis were used to analyse the data. Caregivers were asked about their motivations for caregiving and the challenges they faced.

Results. Caregivers’ motivations grouped into three categories: personal value and fulfilment, giving care because of societal expectations such as filial piety, and practical need. Challenges were grouped into interpersonal challenges, disclosure and finding balance. Caregivers with different primary motivations varied in their responses to these challenges. More autonomous caregivers cited learning points and reprioritised more effectively than less autonomous caregivers, who reported more internal conflict and less control over their situation.

Conclusions. In Singapore and Asia, sociocultural values of family caregiving are not uniformly experienced as positive, and may be burdensome for caregivers who give care primarily for extrinsic motivations. As family caregiving needs increase, targeted psychosocial support for caregivers with less autonomous behavioural orientations may pre-empt caregiver burnout and burden.     

Aging family caregivers: policies and practices

This review examines later life family support for adults with developmental disabilities from a life course perspective that takes into account social trends and changes in service patterns and in attitudes of families. Key issues addressed include: (1) trends affecting family caregiving, (2) health and social outcomes of life-long caregiving, (3) support needs of families, (4) family support policies and practices, and (5) recommendations for a research and policy agenda. Research examining outcomes of life-long caregiving has shown that most families adapt well to having a family member with disabilities. However, some families are at risk for poorer physical and mental health outcomes. These include cultural minorities and families of adults with behavioral challenges. Caregiving does seem to have a negative impact on maternal employment and family income as mothers often give up or cut back on employment to care for a child with developmental disabilities, who is more likely to continue living in the family home throughout adulthood than other adult children. Federal and state initiatives are addressing issues of family support through both the developmental disabilities and aging service systems.     

Caregivers’ beliefs about dementia: findings from the IDEAL study

Abstract

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study.

Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline.

Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition.

Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.     

Managing multiple chronic conditions in Singapore – Exploring the perspectives and experiences of family caregivers of patients with diabetes and end stage renal disease on haemodialysis

Objective: Diabetes mellitus (DM) is the commonest cause of end stage renal disease (ESRD). Despite increasing DM-ESRD prevalence and high dependency on care, there is a lack of literature on DM-ESRD caregivers. We sought to explore the perspectives and experiences of caregivers of patients with DM undergoing haemodialysis in Singapore.

Design: This study employed an exploratory, qualitative design comprising in-depth interviews with caregivers of DM-ESRD patients.

Methods: Semi-structured interviews were conducted with a sample of 20 family caregivers (54.2 ± 12.6 years; 75% female) of DM-ESRD patients. Data were analysed using Thematic Analysis.

Results: Key caregiving challenges identified were managing diet, care recipients’ emotions and mobility dependence. Patients’ emotional reactions caused interpersonal conflicts and hindered treatment management. Difficulties in dietary management were linked to patients’ erratic appetite, caregivers’ lack/poor understanding of the dietary guidelines and caregivers’ low perceived competence. Limited resources in terms of social support and finances were also noted. Physical and psychological well-being and employment were adversely affected by caregiving role.

Conclusion: This study highlights distinctive aspects of the DM-ESRD caregiving experience, which impact on caregivers’ health and challenge care. Disease management programmes should be expanded to support caregivers in dealing with multimorbidity.     

Health-Related Quality of Life in a National Sample of Caregivers: Findings from the Behavioral Risk Factor Surveillance System

Purpose Recent national public health agendas, such as Healthy People 2010, call for improved public health surveillance and health promotion programs for people with disabilities and their caregivers. The goal of this study was to understand the public health impact of caregiving on health-related quality of life (HRQoL) using population-level data. Design & Methods A cross-sectional study design was used. 184,450 adults surveyed during the 2000 national Behavioral Risk Factor Surveillance System survey formed the sample. Binary logistic regression models ascertained differences between caregivers and non-caregivers in reporting reduced (“fair” or “poor”) health. Ordinary least squares regression (OLS) and multinomial logistic regression models examined the influence of caregiving status on HRQoL, measured as categories of healthy days reported in the last 30 days and the number of days reported as physical and mental health not good in the last 30 days. Results Sixteen percent (16%) of the survey respondents were caregivers. There was an interaction effect between caregiving status and age of the caregiver. In the fully adjusted models, caregivers <55 years old had a 35% increased risk of having fair or poor health (odds ratio [OR] = 1.35, 95% confidence interval [CI] 1.28, 1.43) as compared to non-caregivers in that age group, while caregivers 55 years and older had a 3% decreased risk in having fair or poor health (OR = 0.97, 95% confidence interval [CI] 0.92, 1.03) compared to non-caregivers of the same age. In the adjusted models that examined the association of caregiving and healthy days, younger caregivers similarly showed larger deficits in both mental and physical HRQoL compared to older caregivers. For example combining mental and physical days, caregivers <55 had 1.44 fewer healthy days (β = −1.44, standard error (SE) = 0.07), while caregivers 55+ had 0.55 fewer days *β = −0.55, standard error (SE) = 0.13 (compared to non-caregivers in their respective age groups). Implications With increasing population age and the projected increase in caregivers, it is important that we understand the social and public health burden of caregiving and begin to identify interventions to sustain the HRQoL of caregivers. We found that caregivers have a slight to modest decline in HRQoL compared to non-caregivers, and that caregiving affects the HRQoL of younger adults more than older adults. Further research at the population level as to the type and level of burden of caregiving is needed.     

Enrichment and Stress in Families Caring for a Child with a Serious Emotional Disorder

We examined enrichment and stress in 214 families who had children with severe emotional disorders. Caregivers' ratings of enrichment and stress were obtained through a newly developed instrument, the Effects of the Situation Questionnaire, which used parallel items covering 17 life areas. While ratings of stress were generally higher than enrichment, caregivers reported some enrichment in areas encompassing self concept and family relationships, Bivariate and multivariate analyses using various child, family, and service-system variables revealed that stress was notably associated with severity of the child's disorder, low empowerment, and a lack of coordination among service providers. Enrichment was unrelated to severity but associated with high empowerment and spiritual support. Our findings suggest that families' experiences of caregiving can have both positive and negative aspects and that a comprehensive approach to serving and studying families should take both into account.     

Dynandcs in cancer caregiver's health over time: Gender-specific patterns and determinants

Abstract

This study exandned patterns and determinants of three dimensions of caregiver's health of newly diagnosed colorectal cancer patients, i.e. physical, mental and social functioning (N= 148). Physical functioning declined within a 6-month period in female caregivers, while no change was observed in male caregivers. For mental and social functioning, an improvement was observed in male and female caregivers. Change in physical functioning was associated with gender, age, income and initial level. Change in mental functioning was predicted by initial status and positive as well as negative caregiver experiences. Change in social functioning was mainly predicted by initial level and change in patient's dependency. Physical and mental functioning showed the least favorable patterns in female caregivers. The study shows that caregiving may lead to positive health consequences, and underlines the importance of making a distinction between male and female caregivers and of studying caregiver outcomes by using multidimensional assessments.     

Stories of family caregivers of people with dementia in Greece: Implications for counselling

A substantial body of literature has identified high rates of burden, psychological morbidity, social isolation, health and financial difficulties among dementia caregivers. The present qualitative study adopted an Interpretive Phenomenological Analysis approach in order to explore the lived experiences of dementia family caregivers within the Greek sociocultural context. The sample was purposive and consisted of 10 women dementia family caregivers from Athens and Thessaloniki. Individual in-depth interviews were conducted and analysed according to IPA. The participants’ personal accounts included themes related to ethical/existential and cultural aspects of family caregiving; changes in family relationships; impact of the caregiving experiences; sources of support and help seeking; positive and meaningful aspects of the care experience. The research findings are discussed in the context of Gilligan’s moral psychological theory, and cultural dimensions of family caregivers. Implications for counselling interventions aiming at supporting caregivers are presented.     

COVID-19 pandemic impact on family life and exacerbated emotional and behavioral health among preschool children: A longitudinal study

Background/ObjectiveThis study aimed to examine associations of the impact of COVID-19 pandemic on family life with emotional and behavioral health among preschool children.MethodsA longitudinal study including 1595 preschool children aged 3–6 years and their families was conducted in Anhui Province. The linear regression was applied to examine associations between the impact of COVID-19 pandemic on family life and emotional and behavioral health.ResultsResults of the multivariable linear regression indicated that the severe impact of COVID-19 pandemic on family life was significantly associated with more sleep problems, poor dietary behavior habits, more anxiety symptoms, and more problematic behaviors; and these effects exhibited gender and age differences.ConclusionsThe severe impact of COVID-19 pandemic on family life significantly increased the risk for exacerbated emotional and behavioral health among preschool children. It is considered vital to identify risk factors for vulnerable families and then to implement precise interventions when necessary for emotional and behavioral health of children in these families.     

Telephone-Based Behavioral Activation for Improving Sleep Quality in Family Caregivers of People With Dementia: A Pilot Randomized Controlled Trial

Sleep disturbances are common among family caregivers of people with dementia (PWD). Although behavioral activation (BA) shows the potential to improve sleep quality, to date, evidence for this treatment’s feasibility and efficacy for family caregivers of PWD is limited. Therefore, this study pilot tested an evidence-based BA protocol for improving sleep quality in Chinese family caregivers of PWD. The BA intervention involved eight weekly individual telephone-based sessions designed to teach caregivers specific BA techniques. Sleep quality and depression were measured using the Chinese versions of the Pittsburgh Sleep Quality Index (PSQI) and Center for Epidemiologic Studies Depression (CES-D) Scale, respectively. This study also measured leisure activity, positive aspect of caregiving, caregiving burden, health status, and relationship satisfaction. All participants were asked to complete the assessments on paper at baseline and immediately after the intervention. After completing the pilot randomized controlled trial, semistructured interviews were conducted to explore participants’ experiences participating in the BA intervention. A total of 71 family caregivers of PWD (35 in the intervention group and 36 in the control group) were recruited. The majority of participants were female (n = 53, 74.65%), and their mean age was 54.07 years (SD = 10.95). Compared with controls, caregivers in the intervention group displayed significantly greater improvement in sleep quality, as well as perceptions of positive aspects of caregiving and reduction of depression. Most participants were very satisfied with the intervention. These findings suggest that individual telephone-based BA interventions are feasible, acceptable, and effective in improving sleep quality and psychological health in family caregivers of PWD. These results contribute to the literature by providing evidence for developing effective, accessible, and sustainable BA interventions for family caregivers of PWD.     

The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers

A stress and coping model was used to study predictors of individual differences in caregiver adaptation. A total of 54 family caregivers of elderly dementia patients completed interviews and questionnaires assessing the severity of patient impairment and caregiving stressors; caregiver appraisals, coping responses, and social support and activity; and caregiver outcomes, including depression, life satisfaction, and self-rated health. Correlational and regression analyses supported the utility of the stress and coping model. Appraisal, coping responses, and social support and activity were significant predictors of caregiver outcome, even when severity of caregiving stressors was statistically controlled. The importance of a multidimensional approach to assessing caregiver outcomes was supported by regression analyses indicating that each caregiver outcome was predicted by different patterns of stressors, appraisal, coping, and social support and activity. Results are discussed in terms of a stress and coping model of caregiving, and clinical implications for work with caregiving families.     

家庭照料对照料者心理健康的影响

家庭照料通过不同途径和不同因素影响照料者心理健康,包括积极影响和消极影响。早期研究多关注家庭照料带来的消极影响以及相关个体水平变量所起的作用,当前研究中逐渐增加了对照料积极方面的关注,同时更加强调背景变量和个体间关系变量的作用。该文介绍了家庭照料研究中两个重要的理论模型：压力过程模型和双因素模型;总结了不同水平上的各种变量分别对照料的积极和消极作用途径产生的影响;提出了家庭照料者研究发展呈现出的两个趋势：理论模型更为整体化、系统化,研究的关注点由个体水平变量转向反映个体与环境间相互作用的变量;并对我国目前研究中的问题和发展方向进行了讨论     

Stress Reduction for Family Caregivers in Chronic Mental Illness: Implications of a Work Stress Management Perspective

In several studies involving a total of 291 family caregivers for schizophrenia sufferers, the stressors that arise from caregiving were identified. Also identified were the outcomes for caregivers, which often include psychological distress. Caregivers develop various stress-reduction techniques, but this article explores the utility of applying the principles of work stress management to caregiver well-being. An organizational psychology perspective suggests that a comprehensive focus must include not only how individuals can learn to manage the emotional demands of their work, but also how the work of caregiving can be made less stressful for them. Suggestions from a work stress management perspective highlight the possible contributions of worker participation in policy formulation and a collaborative relationship between family and professional caregivers. Potentially fruitful research directions are noted.     

Stories of family caregiving: Case studies in moral reasoning

Family relationships are complex, interdependent, multifactorial, cultural, and sociopolitical. In instances of family caregiving, the dynamics of these relationships influence the well-being of all members. This paper will address one dynamic of family relationships, moral reasoning, as set forth in the theories of Carol Gilligan. Gilligan's theories about two patterns of reasoning, based on the ethics of justice and care, will be examined within “stories” from fiction and interviews with family caregivers. This examination will raise issues about Gilligan's theories as well as about the literary works themselves and will suggest new ways for health professionals to work with family caregivers.     

Narrating the negative consequences of elder care and familial obligation in Atlantic Canada

At a time when renewed emphasis is being placed on the role of the family in providing care for elderly people, shifts in family structures and the demographic profile of societies such as Atlantic Canada are impacting on community structures foundational to familial caregiving practices. Research shows that family members who attempt to provide familial care without adequate support risk negative health and interpersonal consequences. Hence many find it necessary to reflect upon their familial obligations. This article investigates the storytelling processes through which caregivers, aged between 45 and 55 years (N = 26), make sense of their efforts to provide care. We explore the ways in which participants in four focus groups and 12 interviews refer to negative consequences of caring in order to navigate dilemmas arising from their enactment of familial obligations in the absence of adequate support. Copyright © 2003 John Wiley & Sons, Ltd.