The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter?

Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients’ comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients’ comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.     

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Little is known about the burden of cross‐cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall‐sense‐of‐burden‐from‐caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.     

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.     

Correlates of caregiver burden after coronary artery bypass surgery

BACKGROUND: Coronary artery bypass (CAB) patients often rely on spouses for care and assistance during recovery after surgery. Caregiving can be stressful and meaningful depending upon the interplay of many factors not completely understood. These factors may affect the spouse caregiver's health-related quality of life (HRQL), which may impact ability to care for the CAB patient. OBJECTIVE: To investigate patient-spouse caregiver relationship and role variables associated with caregiver burden during the first year after CAB surgery. METHODS: Using a cross-sectional design, a convenience sample of CAB spouses was recruited at 3, 6, or 12 months. Spouses (n = 166) completed a survey that included perceptions of patient health status, caregiver burden and other caregiving variables, and caregiver HRQL. RESULTS: Higher burden scores were associated with patient's gender (female), poorer patient health status, lower caregiver mental HRQL, increased personal gain, and increased caregiver competence. These correlates explained 38% of the variance in caregiver burden. DISCUSSION: Only poorer patient health status and lower caregiver mental HRQL were supported by previous research in this population. Positive relationships between burden and caregiver competence and personal gain may be a reflection that spouse caregivers were invested and working hard. They felt satisfied from enhancement of self but were burdened from their caregiving role, providing support for a previously described two-domain caregiving model. Caregiver screening is essential to identify spouses at high risk for negative outcomes. Longitudinal research is needed to identify the correlates and predictors most likely to influence burden and caregiver gain over time, and to more fully understand caregiving in the CAB population.     

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.     

Transformative aspects of caregiving at life's end

We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.     

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.     

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.     

Can burdened caregivers be effective facilitators of elder care‐recipient health care?

BACKGROUND: Caregiving by informal family caregivers of dependent older people in the community may be affected by burden and by the personal and social resources available to the caregiver. Given the increase in the dependent older population, study of factors affecting informal caregiving is necessary. AIMS: To examine caregiver resources, burden and competence as predictors of health-care facilitation on behalf of older patients. DESIGN: Cross-sectional data were collected by an interview schedule from 240 randomly sampled spousal and filial caregivers in Jerusalem. Study variables included caregiver background variables, general self-concept and feelings of caregiver competence, informal and formal social support, burden and levels of health-care facilitation. Path analysis was performed to clarify the direct and indirect predictors of health-care facilitation. RESULTS: Caregiver facilitation of health-care was positively related both to the presence of personal and social resources and to burden levels. The results suggest that quality caregiving can coexist with burden, provided that ample caregiver resources are present. The most important resources were caregiver sense of competence and support from the professional health-care provider. DISCUSSION: Caregiving burden is not readily reducible, given the chronic nature of older people's health problems. However, caregiver resources can be bolstered, particularly by health professionals. Nurses, who are orientated to holistic family centred care, are especially well-suited for this important intervention.     

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.     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

Concepts in Caregiver Research

Purpose: To clarify and delineate conceptualizations of the effects of caregiving for nursing research and practice with family caregivers.
Organizing Construct: The biopsychosocial (psychosocial and physiological) sequelae, both negative and positive, associated with providing care for a relative or friend with a chronic illness.
Methods: Literature reviewed was obtained via searches of CINAHL, MEDLINE, and PsycInfo computerized databases through mid-2002. Key words for the searches were caregiver, caregiving, family caregiving, caregiver burden, and caregiver appraisal. Reports of both earlier reviews of literature and original research were included.
Findings: Negative concepts included caregiver burden, hassles, strain, and stress. Positive concepts included caregiver esteem, uplifts of caregiving, caregiver satisfaction, finding or making meaning through caregiving, and gain in the caregiving experience. A neutral concept for describing the caregiving process is caregiver appraisal. Although earlier studies were focused on negative aspects of caregiving, more recent research has also included positive aspects.
Conclusions: More attention should be given to (a) gender and cultural differences in caregiving, (b) development of flexible interventions, and (c) the biophysical sequelae of caregiving.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model

Using a stress process model, risk factors (caregiving stressors, caregiver health, and negative social interactions) and protective factors (caregiving appraisals and social resources) were examined as predictors of family caregiver well-being (depression and life satisfaction). Eighty spousal caregivers of hospice patients with dementia or lung cancer completed structured interviews and self-report measures assessing components of the stress process model. Results suggest that objective measures of patient impairment or amount of care provided are not strong predictors of caregiver depression or life satisfaction. Female gender, caregiver health problems, and negative social interactions were risk factors for poorer caregiver well-being. Caregivers who subjectively appraised caregiving tasks as less stressful, who found meaning and subjective benefits from caregiving, and with more social resources had lower depression and higher life satisfaction, even after controlling for patient impairment and caregiver appraisal variables. Regression models accounted for 42% of variance in caregiver depression and 52% of variance in caregiver life satisfaction. Counseling for hospice family caregivers could utilize the stress process framework, and pay particular attention to finding meaning or subjective benefits from caregiving, and remaining active in social roles. Further research providing evidence on caregiver risk and protective factors could improve the conceptual and empirical basis for psychosocial interventions for hospice family caregivers.     

Caregivers of chronically ill elderly: perceived burden

Family members play a major role in providing caregiving assistance to elderly persons and their families. The effect of stressors on family members caring for a physically or mentally ill person has been referred to as caregiver burden. It is an important concern and will become more so with the inevitable aging of the population. Community health and home health nurses must be able to recognize those factors associated with caregiver burden to effectively render care to their clients and families. This study examined caregiver characteristics and the degree to which these variables affect caregiver burden. Although much research focuses on caregivers of Alzheimers clients, this research utilized a wider variety of client diagnoses to examine caregiver burden of those clients. A sample representing 88 caregivers of elderly chronically ill persons was obtained from various sources in the community. Demographic data about the caregiver was collected. The amount of burden they experienced was recorded using the Burden Interview (Zarit et al., 1986). This study found that there was a positive correlation between increased activities of care performed by the caregiver and caregiver burden. This included both the provision of direct care such as bathing and indirect care such as running errands, preparing meals, and performing housework. It was found that sons, as caregivers, reported significantly less burden than did daughters or other relatives. Community health and home health nurses working with families in a caregiving situation have an opportunity to reduce caregiver burden. This is done by assessment of the caregiving environment and implementation of plans for early intervention.     

Gender, time, and money in caregiving

Nurses and scholars in other disciplines have examined the consequences of caregiving on the caregiver in behavioral and attitudinal terms, under the general rubric of "burden." This paper considers caregiver burden in less commonly used labor and economic terms. In addition to expanding nursing's conception of caregiver burden, this approach highlights issues gender-specific to the majority of caregivers, women. Housework is used as a model for women's unpaid work. Based on this model, studies are reviewed in which hours and dollars are measures of caregiving burden. Some specific calculations of the value of elder kin care are given. It is urged that the economic consequences of caregiving be routinely considered and evaluated when nurses in practice and/or research address the needs of caregivers.     

Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden

Family caregiving often is associated with multiple rewards, yet the diversity and intensity of caregiving roles also can result in caregiver strain and burden. Using interventions to reduce the strain and burden on caregivers of patients with cancer is an important role nurses play. This article is a critical review and synthesis of the evidence regarding assessment tools and interventions aimed at reducing caregiver strain and burden in the oncology population. Although the striking finding is the limited number of interventions targeted toward oncology caregivers, suggestions from the literature are offered to support and promote healthy outcomes for family caregivers.