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.     

Caregiver burden and health promotion

Few of the studies describing caregiver stress and burden have focused on the effects of caregiving on the ability of the caregiver to attend to his or her own health needs. Therefore, the major purpose of this study was to investigate whether the perception of burden is related to the health-promoting behaviors of caregivers of the elderly. One hundred twenty-one predominantly female caregivers, mean age 61.1 years, S.D. = 13.4, completed questionnaires measuring demographic and health-related factors, the Objective and Subjective Burden Scales, and the Health-Promoting Lifestyle Profile. Findings suggest that those perceiving lower subjective burden practice more health-promoting behaviors than those with higher subjective burden scores, confirming Pender's contention that situational factors, such as caregiver burden, may affect health promotion.     

Quantifying the burden of informal caregiving for patients with cancer in Europe

Purpose

Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe.

Methods

Caregivers (n?=?1,713) for patients with cancer and non-caregivers (n?=?103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index).

Results

Caregivers for patients with cancer vs. non-caregivers reported significant (P?<?0.05) impairment across all health outcomes, even after adjusting for several confounds (e.g., 3.26-point lower mental health status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety).

Conclusions

Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.     

How much should we expect? Family caregiving of AIDS patients in rural Uganda.

The aim of this study was to measure the burden of care for family caregivers of AIDS patients. A cross-sectional exploratory design was used to describe the care experiences of family caregivers of AIDS care recipients. A questionnaire was used to interview 120 family caregivers of AIDS patients from four rural areas in western Uganda. The questions asked were related to 12 domains of family caregiving. Care burden scores of caregivers were calculated. It was found that care burden scores were high in all domains except those regarding relationships within the families and substance abuse. Serious work overload and low health status were reported. The high burden of caregiving puts family caregivers at risk for decreased health status and increased social isolation and depression.     

Participant characteristics before and 4 months after attendance at a family caregiver cancer education program

Recent trends in health care have placed an increased burden on cancer caregivers. In response, nurses and social workers have been taught to implement a 6-hour psychoeducation program for cancer caregivers that addresses symptom management, psychosocial support, and resource identification. Longitudinal data from a convenience sample of 187 cancer caregivers who attended the program are reported. Data were collected before attendance and 4 months later. Findings confirm the chronic and consuming nature of cancer caregiving. Data indicate that perception of burden did not worsen even when caregiving tasks increased in intensity. Caregiver perceptions of their own health actually improved over time. In addition, the number of caregivers who said they were well informed and confident about caregiving after program attendance increased over time. Further study that randomizes caregivers to intervention/control groups is needed to substantiate the role of similar programs in enhancing caregiver skills and minimizing caregiver burden over time.     

Modeling the effects of past relationship and obligation on changes in the health and health promotion of women caregivers of family members with dementia

Wuest's (1998, 2001) caregiving theory was tested with 282 women self-identified as caregivers of family members with dementia to examine how quality of past relationship within caregiving dyads and sense of obligation to care affected their health outcomes and health promotion over 9 months, using latent growth curve analysis. The model explained 62% of the variance in women's health (Time 4). Health was affected positively by past relationship and negatively by obligation. Health promotion was positively affected by health (Time 1) and by obligation. Change observed in health promotion was nonlinear and positively affected health (Time 4). Findings suggest past relationship and obligation to care predict health outcomes for caregivers and that interventions to increase caregivers' health promotion may improve health outcomes.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Physical and psychosocial health in family caregiving: a comparison of AIDS and cancer caregivers

The objectives of this study were to compare cancer and AIDS family caregivers in regard to their physical and emotional health. The sample consisted of 26 caregivers of persons with cancer or AIDS. Study participants completed a questionnaire that included measures of depression, grief, symptoms of stress, caregiving demands, interpersonal relationships, health status, and quality of life. The data revealed that both AIDS and cancer caregivers reported high levels of stress and depression as compared to community norms. No significant differences were found between AIDS and cancer caregivers for any of the scale scores; however, the two groups differed on several individual subscales. Cancer caregivers demonstrated higher social functioning and were more likely to report that the work of caregiving itself disrupted their ability to socially engage with others. In contrast, AIDS caregivers were more likely to report that their own health limited their ability to socialize. Even though AIDS caregivers experienced less family support than cancer caregivers, they reported more rewards from caregiving. Results suggest that support delivered to caregivers emphasize a more inclusive approach to program delivery, versus a disease-specific perspective, in order to increase the depth and breath of services provided to families undertaking these challenges.     

Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Scand J Caring Sci; 2013; 27; 44–50 Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well‐being; on the other, helping others as a meaningful activity might increase their subjective well‐being. Happiness ratings (as an indicator of subjective well‐being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio‐economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well‐being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well‐being assumption. It is concluded that these cross‐sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.     

The caregiving journey for family members of relatives with cancer: how do they cope?

Family caregivers need adequate support from healthcare professionals to complete the demands associated with caregiving with minimal impact on their own health and well-being. An optimal balance of provision of care between family and support services has not been achieved; therefore, this literature review investigates how family caregivers endure and cope with the challenges of caring for an adult relative with cancer. This review considered the characteristics of caregivers and their functioning, the external and internal supports that help them cope, the ongoing challenges as they journey along the caregiving trajectory, the personal costs of caregiving, and how caregivers cope with supporting their family members through to the end of their journeys. The literature provides an abundance of research on the numerous challenges encountered by families living with cancer; however, little research has been conducted on the coping strategies used by family caregivers at specific stages along the illness trajectory that either optimize or hinder personal recovery. Even less information is available on interventions nurses can introduce to ease the caregiving burden. Improving nurses' understanding of the stressors and unmet needs associated with caregiving is fundamental to the development of effective family-focused clinical interventions.     

Burden of family caregivers with schizophrenic patients in Korea.

The purpose of the study was to test a staged causal model as the theoretical base to determine the relationships among knowledge, coping, and burden among Korean family caregivers with schizophrenic patients. The staged theoretical model contained three stages comprised of contextual variables (stage 1), interactional variables (stage 2), and perception variables (stage 3). The situational variables were caregiver knowledge, gender and age of family caregiver, duration of family caregiving, and the nature of the relationship between patient and family caregiver. The interactional variable was represented by two styles of copings (positive and negative). The perception variable was the perception of subjective burden. A total of 57 family caregivers with schizophrenic patients participated in this study. The instruments, Knowledge Scale, Coping Scale, and Burden Scale, were used. A path analysis was used in this model. The family caregiver's knowledge had an indirect impact on the burden through negative coping, indicating that the less caregiver's knowledge, the more caregivers use negative coping strategies, which results in caregiving perception of subjective burden. The results support that interactional outcome of coping mediates the relationships between caregiver's knowledge and the impact of subjective outcome of caregiving burden.     

Fatigue affecting family caregivers of cancer patients

Fatigue, a universally reported symptom, may be one of the most prevalent feelings of people suffering physical or mental diseases. An understanding of the factors leading to fatigue in the caregiving population can contribute to better care and support of both the cancer patient and caregiver. The purpose of this article is to investigate and describe the experience of fatigue among caregivers of cancer patients, in relation to caregiver age, employment status, number of hours of care provided daily, duration of caregiving, and the impact upon the caregiver's schedule. A sample of 248 caregivers of cancer patients, participating in the Family Homecare Cancer Study, were surveyed regarding fatigue related to their caregiving roles. No relationship was found between severity of fatigue experienced by the caregiver of the cancer patient and caregiver age, employment status, the number of hours of daily caregiving, or the duration of caregiving. However, a significant relationship was found between fatigue and the impact of care on the daily schedule. This finding has strong implications for the oncology nurse, because the more the caregiver's schedule is a burden, the greater will be the fatigue experienced.     

The nature and scope of stressful spousal caregiving relationships

The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships, however, relational difficulties around caregiving are seldom described in the literature. This article presents findings from content analysis of baseline interviews with 40 Alzheimer's disease (AD) and Parkinson's disease (PD) spousal caregivers enrolled in a home care skill-training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions, and care decision-making conflicts.     

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

Aims and objectives. 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. Background. 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. Design and methods. 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. Results. 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. Conclusions. 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. Relevance to clinical practice. 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.     

Caring for loved ones with frontotemporal degeneration: The lived experiences of spouses

There is an abundant literature about the experience of caregiving for a spouse living with Alzheimer's disease (AD), but there are very few qualitative studies about caregiving for persons living with Frontotemporal Degeneration (FTD). FTD causes a change in personality and affected persons may lose the ability to adhere to social norms. Thus, the emotional loss caregivers experience is often confounded by anger in response to embarrassing and socially inappropriate behaviors. In this paper, we offer a glimpse of this lived experience through the voices of two spouses whom we interviewed, each with experience caring for persons living with FTD. We suggest that FTD caregivers experience a loss of emotional attachment to their spouse because of their partner's behavioral symptoms. This loss gives rise to feelings of isolation and anger as caregivers assume new roles and reimagine their future. The findings from these interviews illuminate the need for more research and greater attention and support for FTD caregivers early in the disease trajectory.