Caregivers Of Family Members Research Articles

African American Dementia Caregivers

Differences in ethno-cultural perspectives have been previously suggested as the source of variation among ethnic groups regarding their approaches to dementia family caregiving. This study explored the perceptions and experiences that African American caregivers of family members with dementia encountered on their journey toward obtaining a diagnosis of dementia for their loved ones. An overall theme of respect emerged from a focus group session with seven family caregivers. Reports of respecting older family members through `normalization', thereby delaying evaluation for dementia, then encountering a lack of respect from health care providers when one was finally sought, created a duality of respect vs disrespect. This tension constituted a subtle but profound form of caregiver stress that may be unique to African American caregivers, and one that has not been considered in standardized measures. Findings inform providers about important issues to consider when working with and studying dementia caregiving among African American families.

Family support for hospice caregivers.

This qualitative study investigated family supports for primary caregivers of hospice patients, as perceived by both the primary caregiver and other family members involved in patient care. Family support was conceptualized in terms of (1) who offers support; (2) types of support; (3) frequency of support; (4) family communication; and (5) change in family relationship during the caregiving process. Twenty-four interviews were conducted with 10 primary caregivers and six family members identified by the caregiver as the person they could most call on for help. Interviews were conducted shortly after admission to hospice and approximately two months after the death of the hospice patient. Primary caregivers and other family members involved in care agreed that the primary caregiver provided most care. They also agreed that family members provided instrumental and emotional support, the frequency of assistance was appropriate, and families had grown closer since learning of the terminal illness. There was less agreement regarding family communication during the caregiving process. Implications for interventions with families of hospice patients are discussed.

Health-promoting self-care in family caregivers.

Caregiving for family members with cognitive impairment is stressful and time consuming. Because of the attention needed to manage the memory and behavior problems of the care receiver, family caregivers have little time to attend to their own health needs. Most research related to the health of family caregivers has been conducted within a stress-illness framework. Fewer researchers have studied caregiver health from a health-promotion paradigm. The purpose of this study was to compare health-promoting self-care behavior infamily caregivers with demographically matched noncaregivers and to investigate the mediational effect of health-promoting self-care behavior on the relationship between stress and well-being. Findings revealed that family caregivers scored significantly lower on all measures of health promotion, with the exception of Nutrition and Number of Medications, and significantly higher on Barriers to Health-Promoting Actions. Health-promoting self-care behavior acted as a mediator to reduce the effect of caregiver stress on general well-being.

Caregivers described how an Alzheimer's disease respite programme gave them time to attend to their own needs

(2001) Can J Nurs Res 33, 81. Perry J, Bontinen K. . Evaluation of a weekend respite program for persons with Alzheimer Disease. . Jun; . : . –95 ....

The Caregivers’ Story: Home Caregiving for Persons with Dementia

This study identified the salient issues of caregiving for family members of persons with dementia using computer-assisted content analysis followed by factor analysis. Differences in responses between caregivers in two treatment groups were also noted. Caregivers (N = 226) were interviewed on three occasions over 12 months. They consistently identified the following themes of caregiving in order of significance: (a) making meaning of the experience; (b) defining the caregiver role; (c) identifying specific caregiving strategies; (d) dealing with change, unpredictability, and vulnerability; (e) evaluating past and future decisions and quality of care; and (f) finding help and support. This representation of the caregiving experience is useful to home care nurses by providing a framework to address issues most important to caregivers and upon which therapeutic interventions can be developed.

Caregivers of Stroke Patient Family Members: Behavioral and Attitudinal Indicators of Overprotective Care

Three models of the sources of overprotection in stroke patients were tested in a study of the behavioral and attitudinal concomitants of overprotective caregiving. Stroke patients and their family member caregivers were interviewed to assess feelings of overprotection, physical and mental functioning, and caregiving-related attitudes. The couples were then videotaped as they interacted on four tasks and the tapes were coded for specific behaviors and affect directed toward the patient. Strong support was found for the Resentment model that overprotection will be associated with an overcontrolling caregiving style, negative affect, and resentment toward the stroke patient. No support was found for the model that overprotection is related to overhelping. In addition, feeling overprotected was associated with patient dependency. Two conclusions are discussed: the variety of potential sources of overprotection found in the study and the importance of the emotional tone with which caregivers provide assistance.

Grantmaker Support to Caregivers of Family Members with Alzheimer's Disease

Social workers and human service agencies are in the forefront as service providers to caregivers of family members with Alzheimer's Disease. Human service agencies often depend on foundation grantmakers to support needed programs. This article is based on a 1999 study to determine the extent to which grantmakers in the field of aging supported elder caregiving during the past five years. It presents an overview of philanthropic trends in family elder caregiving and examples of foundation supported programs for caregivers of Alzheimer's individuals. Grantmakers who demonstrated an interest in this field funded a range of programs including assessment, education, support, and respite programs that target unrecognized needs and address service gaps. Implications for Alzheimers service providers seeking funding are discussed.

The stress process of family caregiving in institutional settings.

This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers (n = 133) with demented relatives residing in suburban skilled nursing facilities. We interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. We used block-wise regression analyses to determine the predictors of caregiver depression. Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident-caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes.

Experiences of Family Caregiving among Older Australian Women

This article uses quantitative and qualitative methods to examine the effects of family caregiving on physical and emotional wellbeing, finances and leisure among a cohort of Australian women aged 70 to 75 years. A total of 11,939 women was examined. Of these, 10 percent (n = 1235) identified themselves as caregivers for frail, ill or disabled family members and 168 made open-ended comments about their caregiving experiences. Unlike other surveys with younger respondents, the data failed to demonstrate any differences in physical health between caregivers and others. Caregivers were, however, significantly more likely to have low levels of emotional wellbeing and to feel stressed, rushed and pressured. Qualitative analysis supported the value of the concept of the 'ethic of care' in understanding the social and individual forces that propel older women into providing family care despite its demonstrably negative effects on their wellbeing.

Families with parents and children living with HIV described strategies to meet 3 common goals for normalisation

Rehm RS, Franck LS. Long-term goals and normalization strategies of children and families affected by HIV/AIDS. Adv Nurs Sci2000 Sep; 23 : 69 –82 [OpenUrl][1][CrossRef][2][PubMed][3] QUESTION: What are the long...

Adults' recollections of their experiences as young caregivers of family members with chronic physical illnesses.

The aims of this study were to describe the number, kind, and intensity of caregiving activities performed by individuals who assumed caregiving responsibilities, as youngsters, for adults with chronic physical illnesses; to explore the meaning and effects of the caregiving experience on those individuals; and to examine positive and negative effects of caregiving then and now. Family mobility, demographic changes, and health care system changes in the United States of America (USA) have contributed to an increasing number of youngsters under the age of 18 caring for adults with chronic physical illnesses in the home. The effects of such caregiving on youngsters and the long-term effects on them as adults require study. This descriptive, retrospective study had a convenience sample of 51 adults (age range 19--68 years now, 3--19 years then) who cared for their family members diagnosed with cancer, stroke, cardiovascular disease, multiple sclerosis or amyotrophic lateral sclerosis, respiratory disease, diabetes, or arthritis. Demographic data and caregiving data were analysed using descriptive statistics. The semistructured interview data were analysed using content analysis. Of the caregiving care tasks most frequently performed, personal care was most difficult and household tasks were most time consuming. Family life, school, and time with friends were areas most likely to be affected by caregiving. Most subjects indicated they would permit their own children to assist with care as long as the youngster was not the sole caregiver. Youngsters need to be informed about the illness and caregiving tasks, have adequate support systems, and have some time to 'still be a child'. Professional caregivers should raise questions in their practice regarding involvement in caregiving by both adults and youngsters. If youngsters participate in caregiving in the home, they need to receive adequate information regarding care and the illness trajectory. Family-related research including the long-term effects of such experiences on the youngsters and their families is recommended.

African American Female Caregivers of Family Members Living with HIV/AIDS

Eight African American women were interviewed to better understand their experiences providing care for relatives who were living with HIV/AIDS. Individual interviews and a focus group discussion took place, investigating the following issues: disclosure, caregiver stress and coping, and support. They were also asked to give advice to other caregivers. These women's lives were marked by stress and change, and they used a variety of strategies to cope in their AIDS caregiving role. They experienced a range of emotions because of the new responsibilities that accompanied the resumption of the caregiving role that many thought they had completed. However, they all willingly took on the challenge. They expressed having a strong sense of spiritual faith, and several felt empowered to become active in the fight against HIV/AIDS. The need for adequate support systems, both formal and informal, was a unanimous concern. The findings of this exploratory study are discussed in terms of the support needs of African American female AIDS caregivers, the possible influence of culture and societal values, and the implications for future research and program development.

The Emotions and Coping Strategies of Caregivers of Family Members with a Terminal Cancer

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal cancer through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of "burden" by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.

SUSTAINING THE RELATIONSHIP: WOMEN'S CAREGIVING IN THE CONTEXT OF HIV DISEASE

In North America and throughout the world the number of persons living with human immunodeficiency virus (HIV [PLWH]) continues to increase. Before the recent discoveries of effective antiviral treatments that have given hope to families of PLWH, acquired immune deficiency syndrome (AIDS) was looked upon as a disease that was a virtual death sentence to those who were infected. The symptoms and opportunistic infections associated with AIDS are varied and debilitating, and PLWH require intensive and prolonged care during their many illnesses and rigorous treatments. As medical breakthroughs have prolonged the lives of the infected persons, the complicated regimens of the treatments and the physical effects of both treatment and disease continue to require the support and caregiving of family members. As is so often the case with caregiving, the tasks of caring for the men, women, and children with AIDS have been taken on in many cases by the women in their lives: their mothers, sisters, aunts, and other family members. In this study I used the grounded theory method to generate a substantive theory of women's caregiving in the context of AIDS. The primary process for collection of data in this study was interviewing participants. In-depth interviews were conducted with 9 women who ranged in age from 28 to 65. Three of the women had AIDS and were also caregivers, 3 other caregiving women were sisters, and 3 were mothers of PLWH. Five of the informants were White and 4 were African American. The basic social psychological process (BSPP) that emerged from the analysis of the data was sustaining the relationship. In this study, role transition, managing behavior, reciprocal caring, balancing independence, and managing distance were categories of the BSPP, "sustaining the relationship" as women engaged in the intricate processes of caregiving. These were overlapping and interacting processes that women used to nurture and preserve not only the object of their care, the person with HIV, but also that person's relationships with her or his significant others, including the relationship with the caregiver. In this article, relationships between categories are illustrated with quotations from the data. Implications for future research and for clinical practice are discussed.

Coronary artery bypass graft surgery patients and their family member caregivers: Outcomes of a family-focused staged psychoeducational intervention

This experimental study examined the effectiveness of a psychoeducational intervention delivered over 12 weeks. The sample was comprised of 38 coronary artery bypass graft (CABG) surgery patient-family member caregiver dyads who completed all six data collection points. Experimental and control groups did not differ in emotional health, functional health status, or satisfaction. Differences in the number of self-reported complications/symptoms were not in the predicted direction. Improvement occurred in clinical, functional, and emotional outcomes; however, several symptoms, such as fatigue and pain, persisted. Family caregivers reported more depressive symptoms than patients preoperatively and at later stages of recovery. Implications include the need for instruction about the recovery trajectory and adequate preparation and support of home health nurses and family caregivers. Copyright © 2000 by W.B. Saunders Company

Older Caregivers for Family Members With HIV or AIDS: Reasons for Caring

This qualitative study explored the experiences of 19 older women from minority communities who provided care to their children or adult relatives infected with human immunodeficiency virus (HIV). These caregivers felt that providing this care contributes significantly to their sense of identity. Most provided care because of their sense of personal commitment to caring for the individual in need or because they felt they were the best or only available source of care. The findings reveal a previously hidden group of aging family members who provide extensive support for people with HIV and AIDS while paying minimal attention to their own needs.

A Sociocultural Stress and Coping Model for Mental Health Outcomes Among African American Caregivers in Southern California

A sociocultural stress and coping model to explain emotional distress among caregivers of family members who have dementia across ethnic and cultural groups is presented and explored in a sample of 41 African American and 128 non-African American caregivers. In this sample, African American caregivers reported lower levels of burden but equal levels of depression and anxiety. In the structural equation model, previous reports that African Americans' lower appraisal of caregiving as burdensome resulted in lower levels of emotional distress were confirmed. However, in this model, this pathway was counterbalanced by a tendency of African American caregivers to use emotion-focused coping and, therefore, increase emotional distress. African American caregivers were also younger and in poorer health, factors which tend to increase both burden and emotional distress outcomes. As suggested by the sociocultural stress and coping model, the influences of ethnic group variables on stress and coping processes are complex and multidirectional.

Caregivers of family members with dementia described the experience of quality respite as a 3 phase cognitive journey towards a sense of “being free”

(1999) West J Nurs Res 21, 450. Strang VR, Haughey M. . Respite—a coping strategy for family caregivers. . Aug; . : . –71 . [OpenUrl][1][Abstract/FREE Full Text][2] QUESTION: How...

Depression as a Mediator: Viewing Caregiver Well-Being and Strain in a Different Light

This study examines the relationship between caregiver characteristics and caregiver well-being as comprised of two components, activities of living and basic needs. The role of depression in predicting caregiver well-being is explored using a sample of caregivers of family members with a chronic illness. Using a path-analysis model, multivariate findings suggest that depression explains 56% of the variance in activities of living and 64% in basic needs. Path analysis further identifies depression as a mediator between stress and well-being. Implications for research and practice are highlighted.

Migrants and Their Parents

This article reports findings from exploratory interviews with migrants involved in caregiving for elderly parents who have remained “back home.” The findings indicate that such distant carers make an important contribution to the caring process through letters, phone calls, and caregiving visits. This is a contribution that has not been recognized in literature on aged care. The study also shows that such caregiving may involve an ongoing dialogue with the home country over many years and even the consideration of remigration as the consequence of family obligations and the perceived need for caregiving of family members in the home country.