Older Family Caregivers Research Articles

Cross-national differences in the prevalence and correlates of burden among older family caregivers in the World Health Organization World Mental Health (WMH) Surveys

Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiological research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Method Cross-sectional community surveys in 20 countries asked 13 892 respondents aged 50+ years about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status and type of condition. Among the 26.9-42.5% respondents in high-, upper-middle-, and low-/lower-middle-income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours per week in those giving any time were 16.6-23.6 (169.9-205.8 h/week per 100 people aged 50+ years). Burden in low-/lower-middle-income countries was 2- to 3-fold higher than in higher-income countries, with any financial burden averaging 14.3% of median family income in high-, 17.7% in upper-middle-, and 39.8% in low-/lower-middle-income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low-/lower-middle-income countries.

Gesundheitsbezogene Lebensqualität und Pflegebelastung von Angehörigen palliativer Tumorpatienten in häuslicher Versorgung

Family caregivers of palliative cancer patients are usually much burdened. In order to avoid the failure of home care, family caregivers need support. The current study evaluates support needs in family caregivers of palliative cancer patients. 53 family caregivers of palliative cancer patients answered the questionnaire. Health-related quality of life was assessed using the EORTC QLQ-C30 questionnaire. Home care burden was assessed using the "Burden Scale for Family Caregivers" (BSFC). Family caregivers suffered of reduced social and emotional function. Female and older caregivers reported a stronger home care burden than male and younger caregivers. For female and older family caregivers of palliative cancer patients, home care is very burdensome. Thus, female caregivers need, above all, psychosocial support, whereas older caregivers need the most support in a physical and social level.

Self-reported physical and mental health of older adults: The roles of caregiving and resources

Objectives This study examined factors associated with self-reported physical and mental health, focusing on caregiving status and the availability of social supports and financial resources. Methods Two bivariate analyses were performed to examine the sociodemographic characteristics as well as perceived health outcomes among caregiving and non-caregiving participants. Two-equation probit models were used to determine independent predictors of self-reported physical and mental health, using data from 1071 community-based adults (≥60 years). An additional bivariate analysis was conducted to investigate the characteristics of caregivers who reported better physical health. Results Approximately 17% ( n = 183) of respondents reported being caregivers, and those in caregiving roles tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis. Better physical and mental health outcomes were common for caregivers and non-caregivers who reported having more resources (e.g., higher income, better preparedness for future financial need, higher satisfaction with transportation and housing, and no limitation of usual daily activities). However, sociodemographic and social support factors were not significantly associated with physical and mental health among caregivers, unlike their non-caregiver counterparts. In the probit model, caregivers were more likely to be physically healthy compared to non-caregivers (Coefficient = 0.34; p-value = 0.031). Compared with healthy non-caregivers ( n = 631), healthy caregivers ( n = 141) tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis. Conclusions Findings suggest that preparing resources and maintaining strong social support systems may foster health status among older family caregivers.

‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities

Accessible summaryWhen sons and daughters with disabilities live with their parents all their lives, this can sometimes be difficult for the parents as well as the sons and daughters. We asked the parents what they like and dislike about having their sons and daughters living with them and what makes it easy and what makes it difficult. The parents who took part in this study told us that They loved their sons and daughters very much and had much fun living together; Sometimes they had difficulties getting help or services; They worry a lot about the future and what will happen when they can no longer look after their sons and daughters with disabilities; It is really important that families plan ahead so that everyone knows what will happen when parents get older and can no longer look after their sons and daughters with disabilities. SummaryResearch‐informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty‐nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long‐term care and service arrangements, health and psychological needs and ‘future planning’. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.

De «tapte» forhandlinger — Eldre ektefellers erfaringer med medvirkning i møtet med hjemmesykepleien

Aim:The aim of the study is to describe how elderly spousal caregivers experience participation in the decision making process with the home nursing care.Background:Earlier studies show that family caregivers want to be acknowledged as real partners, but still do not feel involved in the decisionmaking process. The participation of the older family caregivers has, thus far, received little attention in research, even though their contribution is of key importance.Methods:Qualitative interviews were conducted with nine elderly spousal caregivers; four women and five men between the ages of 72 and 85.Findings:Findings show that the time of delivery of services is a key issue where spouses want to participate in decisions. Spouses' strategies of participation are often subtle and cautious. Regardless of strategy findings indicate that the spouses in most cases lose negotiations, and end up either doing the care themselves, or complying with the home carers' decisions.

A Study on Family Satisfaction with Community Mental Health Center Services in Gyeonggi Province by Families of People with Mental Illness

The purpose of this study was to evaluate the service satisfaction for families who have someone with mental illness, and are using community mental health centers in Gyeonggi Province. The participants in this study were 796 family members. Data were collected using Family satisfaction survey questionnaire developed by the author (23 items on family service and 15 items on client service). The total satisfaction level for the service with family and client resulted in above average scores. Of the 23 service items, data showed the highest level of satisfaction was with professional skills and attitude, and day rehabilitation programs, and the lowest for professional activities for advocacy and social welfare benefits, emergency & crisis intervention, medical expense subsidies. Of the 15 service items, job and housing related service had the lowest level of satisfaction. It is recommended that psychiatric emergency & crisis intervention programs and system development be accelerated. Also, there is a need to develop medical expense subsidy programs for older family caregivers, job and housing focused rehabilitation programs and community facilities for the client, as well as more active and powerful professional advocate activities for persons who have mental disabilities and their families.

The association between caregiving satisfaction, difficulties and coping among older family caregivers

The aim was to study the association between gender, extent and content of care, satisfaction, coping and difficulties in the caregiving situation among older (75+) caregivers and to identify clusters of caregivers. The aim was also to explore psychometrically two instruments assessing satisfaction and difficulties in family caregivers. Caregiving is a complicated phenomenon. Much of the research has focused on negative aspects, such as the burden, stress and emotional strain. Caregiving is known to affect health negatively for the caregivers. Little is known about satisfaction and motivation in voluntary work, such as informal caregiving, especially among older persons. Cross-sectional. The sample for this study consisted of 171 informal caregivers aged 75 and over, identified from an age-stratified sample in a postal survey among older people in the southern part of Sweden. Male caregivers proved to be more satisfied than female caregivers; caregiving had seemingly widened their horizon and had helped them to grow as persons. Based on satisfaction scores, those satisfied had a higher proportion of male caregivers and a significantly higher amount of caregiving hours per week. They used other coping strategies than the respondents in the other cluster, i.e. less satisfied in using more problem-solving strategies. The instruments tested were appropriate for work in clinical and research settings, although the internal dropout indicates that a shorter version would be more useful. Those who found satisfaction in care used more problem-focused coping strategies and were more often men than women. From a salutogenic point of view, this may give important knowledge about factors that can promote health. The findings indicate that women deserve extra attention as informal caregivers as they did not find caregiving as rewarding as the men did. This may in turn make them less protected against the negative consequences of caregiving. Reinforcing the health-promoting qualities in caregivers who are not feeling well, with women as a particularly vulnerable group, may restrict unnecessary suffering for both the caregiver and the person cared for.

Educating Caregivers of Geriatric Rehabilitation Consumers

As patients are being discharged “sicker and quicker,” family caregivers have become increasingly responsible for the technical care and rehabilitation of older family members. Although they play a critical role in the rehabilitation of older patients, they are rarely included in the patient teaching process. This article offers suggestions for the development of educational materials for older family caregivers based on the andragogical theory of adult education. Recommendations include supplementing video with printed materials, a strategy for creating understandable printed materials, using the Web as a teaching tool, and verbal communication strategies.

Preventive health practices: comparison of family caregivers 50 and older.

The purpose of this study was to describe adherence to recommended preventive health practices among middle-aged and older male and female family caregivers of individuals receiving home health services. Perceptions of the burden and benefit of caregiving, wellness orientation, social participation, and community resource use by the caregiving dyad (caregiver and carereceiver) were also explored using the t test and the chi2 test to detect gender differences. A sample of 319 participants 50 and older was recruited from a home health agency in southwestern Pennsylvania to participate in a telephone survey. Results revealed that caregivers had performed 86% of age- and gender-appropriate preventive health practices, but they currently adhered to guidelines for 63% of such behaviors, regardless of gender. Men experienced less burden than women, and were more likely to acknowledge that caregiving made them feel useful and appreciated and gave more meaning to their lives. The study suggests that family caregivers may be as vigilant in their preventive health behavior as the general population, despite their responsibilities. Nurses in contact with middle-aged and older family caregivers are well positioned to encourage health promotion and disease prevention behaviors in this accessible population.

Family caregiver assessment. Essential for effective home health care.

Home health care nurses do not routinely assess the health of family caregivers despite their essential contribution to the client's care. In this study, home care nurses collected data on 51 older family caregivers from their caseloads to assess their health. The average age of the caregivers was 75.1 years (SD = 6.09). Most (66.7%) were women and were the home health client's spouse (82.4%). These individuals had been caregivers for up to 20 years, and reported spending an average of 13.3 hours per day in this role (SD = 9.15). Approximately half (n = 25) of the caregivers reported poor or fair health, with 33.3% (17) reporting a decline in their health over the previous 6 months. Unmet health needs included the need for blood pressure monitoring, mammograms, PAP smears, and prostate examinations. Referrals to other health care providers or community agencies were required by 78.4% of the caregivers, 78.4% required health teaching, and 23.5% required home health services themselves. Those requiring home health care were more likely to be on more medications and classify their health as fair or poor. These findings confirm those of a pilot study conducted on 51 other family caregivers. Nurses serving the geriatric population need to conduct systematic family caregiver assessments to identify caregiver health needs that could impair their caregiving ability. In particular, for home health care to be effective, nurses must conduct caregiver assessments.

Anger Expression and Natural Killer Cell Activity in Family Caregivers Participating in a Physical Activity Trial

Associations between psychological functioning and natural killer cell activity (NKA) were examined in 23 older (62.2 ± 7.5 years) family caregivers randomized to a moderate intensity four-month exercise program or to a wait-list control condition. At baseline, although NKA was related to anger-control (r = -.42; trend p < .06) and anger-out (r = .50; p < .03), it was not related to depression, anxiety, perceived stress, or caregiver burden. After controlling for baseline NKA, changes in anger-control explained 14 percent of the variance in NKA four months later. Decreases in anger-control predicted increases in NKA. Group assignment (exercise vs control) was unrelated to changes in NKA over the four-month period; however, the study was not powered to detect this effect. These results are consistent with reported relationships of anger expression with other physiological measures, and extend the importance of anger expression to immune functioning in older family caregivers.

Caregiver hardiness explored within Watson's theory of human caring in nursing.

Older family caregivers are often responsible for aged parents or spouses. The purpose of this theoretical article is to review the literature regarding the concept of hardiness, present a summary of Jean Watson's Theory of Human Caring in Nursing, explore older caregiver hardiness within Watson's theory, and discuss implications for gerontological nursing. An understanding of older caregiver hardiness within Watson's theory will guide gerontological practice, research, and theory development in nursing.

Caregiving as Women's Work: Women's Experiences of Powerfulness and Powerlessness as Caregivers

In this study, two groups of women caregivers, older family caregivers, and women who do "double duty" caregiving (paid health care professionals who simultaneously are unpaid elder caregivers in their 'off' time), participated in daylong research workshops in which they first identified dimensions of an "ideal" caregiving situation and then, using a critical incident technique, explored the meaning of "power"-feeling powerful and powerless-for them as caregivers. This article is devoted to examining the ways in which women understand the notion of "powerfulness" and "powerlessness" in their work as caregivers. Themes emerging from caregivers' critical incidents are discussed and considered in light of previous literature. The article concludes by drawing implications from the project's findings for policy, practice, advocacy, and conceptual development.

An Aid to Empowerment: A Caregiver Well-Being Scale

To aid medical social workers in the promotion and support of well-being among older family caregivers, a simple, valid, and reliable scale was developed. This scale has two subscales, one that assesses the extent to which a caregiver's basic human needs are being met and one that assesses the extent to which a caregiver can satisfactorily meet his or her predictable activities of daily living. Developed from a model that focuses on a person's strengths, this tool was created to help social work practitioners enable caregivers to become more in touch with their own abilities. Both subscales had high internal reliability and construct validity. This scale may have value in other areas of caregiving. Implications for using this scale in practice are presented.