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.     

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.     

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.     

Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study

BACKGROUND: Family caregivers of relatives with dementia report higher level of psychological distress than other caregivers and report their self-related health as poorer than that of comparison groups. AIMS AND OBJECTIVES: The purpose of the study was to examine characteristics of family caregivers and to assess whether income, subjective health, age and relationship were associated with the burden of care they experienced. SETTING: Group living units in southern Sweden. PARTICIPANTS: Fifty caregivers who served as informal caregivers of relatives with dementia in group living care. DESIGN: Interviews regarding economic and social conditions and well-evaluated scales for health and caregiver burden (CB) were used. RESULTS: The majority of the family caregivers were adult children, and twice as many were female than were males. The investigation showed that total burden, strain and disappointment, adjusted for health and age, were related to income. Disappointment showed a relation to subjective health. The adult children showed a significantly higher degree of total burden, irrespective of age, compared to other family caregivers. Low income was associated with a higher degree of burden among adult children. However, elderly participants experienced less of burden than younger ones. CONCLUSION: Our findings indicate that caregivers with low health profile and low income, especially adult children, are associated with higher CB. RELEVANCE TO CLINICAL PRACTICE: People with coexisting risk factors (low income, low perceived health) are the ones who may benefit most from health-oriented interventions.     

Short-term changes in sleep,mastery & stress: Impacts on depression and health in dementia caregivers

Dementia caregiving is stressful and can result in negative health outcomes. Understanding the intermediate dynamic changes in caregiving may help nurses target interventions. The purposes of this study were to measure short-term changes in sleep, mastery, and stress in dementia caregivers and to explore their impacts on caregiver depression and health. Seventy-four caregivers were measured at baseline, 4, and 8 weeks for changes in global mastery, caregiver mastery, sleep quality, perceived stress, depression, and health. Over the 8 weeks, changes were observed in sleep, mastery, stress, and health measures, indicating support for the dynamic and complex nature of dementia caregiving. Sleep and perceived stress made unique contributions to depression, but the contributions to health varied. Clinical implications for nurses are to assess caregivers frequently and reinforce successful interventions periodically as caregiving evolves.     

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.     

Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis.

Because of conflicting results, in order to clarify the state of the science it was necessary to do a systematic analysis of the literature on research testing the effect of interventions on the burden of persons caring for family members with dementia. The purpose of this study was to evaluate, using meta-analytic techniques, those intervention strategies (support group, education, psychoeducation, counseling, respite care, and multicomponent) designed to help caregivers cope with the burden of caregiving. Using meta-analytic methods developed by Glass, McGraw, and Smith (1981) and Hedges and Olkin (1985), 24 published research reports testing 27 treatments for caregivers of adults with dementia were synthesized. Overall, the analysis showed that collectively the interventions had no effect on caregiver burden. Only the category of multicomponent interventions significantly reduced caregiver burden. Burden may be too global an outcome to be affected consistently by intervention. Better and more precise measures are needed to evaluate the effects of caregiver interventions properly.     

The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia

Aim. The aim of this study is to examine associations between caregiver burden, perceived health and sense of coherence in family caregivers to persons with dementia living at home. Background. Most of the studies on family caregivers have focused on burden and morbidity. However, the caregiver's sense of coherence and perceived health have not been studied earlier in relation to caregiver burden. Design. A cross‐sectional investigation design was used. Methods. Older persons, 2238 subjects, with any form of social services, were invited to an assessment of cognitive capacity. Those who had cognitive decline (255) were invited for a medical examination and 130 persons were diagnosed as having dementia. The family caregivers to persons with dementia answered a questionnaire including a caregiver burden scale, the Nottingham health profile scale, sense of coherence scale and the Euroqol instrument. Results. The family caregivers experienced moderate burden, and strong associations were noted between burden, especially isolation, disappointment and emotional involvement with perceived health and sense of coherence, adjusted for age and relationship. Caregivers with lower burden reported significantly better perceived health and higher mean score of sense of coherence than caregivers with higher burden. Conclusions. Assessment of status of family caregivers of persons with dementia living at home seems to be gaining considerable importance. The caregiver burden scale and the sense of coherence scale seem to be highly useful for identifying carers at risk of stress, pattern of burden and coping strategies. Relevance to clinical practice. Nurses can help family caregivers to identify their negative experiences about caregiving and can help them reflect upon their coping strategies to find balance in their situation. Risk groups of caregivers may be identified, especially those with low perceived health and sense of coherence, for early interventions to reduce burden.     

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.     

Alzheimer's Disease and Vascular Dementia: The Complex Relationship between Diagnosis and Caregiver Burden

The purpose of this study was to determine whether patient dementia diagnostic type (Alzheimer's Disease/Vascular Dementia) is associated with caregiver burden. A retrospective case review was conducted of patient and caregiver information collected at a university-based dementia clinic. Results showed that primary dementia diagnosis was not associated with burden. Rather, psychotic symptoms paired with poor IADL functioning generated the most burden, while cognitive dysfunction did not significantly influence burden. Additionally, caregiver gender (female), depressive symptoms, and being an adult child of the care recipient were associated with increased caregiver burden. Findings advocate for including tailored designs in caregiver interventions.     

Wives, husbands, and daughters of dementia patients: predictors of caregivers' mental and physical health

The purpose of this study was to investigate differences in and predictors of mental and physical health among wife, husband, and daughter caregivers of dementia patients using a stress and coping framework. The sample of 151 caregivers consisted of 55 wives, 43 husbands, and 53 daughters and was recruited from multiple community-based sources. Variables addressed were caregiver age, social position, years spent in caregiving, dementia severity, burden, worry, physical health, and mental health. Analysis of variance demonstrated gender-specific, kinship group differences in burden (F = 8.09, p = .000), worry (F = 6.287, p = .002), and age (F = 55.27, p = .000). Post hoc comparisons indicated that wives reported worrying most, while husbands were oldest and reported the least burden. Health predictors differed by group, with wives' mental health being predicted by severity of dementia, age, and worry (R2 = .16), husbands' mental health was predicted by burden and worry (R2 = .18); and worry was the only significant predictor of daughters' mental health (R2 = .33). Wives' physical health was predicted by years of caregiving and age (R2 = .10); husbands' physical health was predicted by age and worry (R2 = .24); and daughters' physical health was predicted by years spent in caregiving and burden (R2 = .27). Findings suggest that a stress and coping framework is a better predictive model for daughters' mental and physical health than for health of wives and husbands. Findings further indicate that different health-related nursing interventions may be required for different caregiver groups.     

Family caregivers' subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence

Family caregivers experience both positive and negative reactions in caregiving situations. There has been considerably less published about the positive aspects, however. The general aim of this study was to explore a previously developed instrument to study rewards gained by caregivers and to determine the factors associated with satisfaction in family members caring for patients with dementia living at home. The study group consisted of 153 such family members. Standardized interview schedules exploring different background characteristics, and instruments for assessment of the degree of dementia in the patients and the caregivers' total burden and degree of satisfaction were used. Factorial analysis of the Caregiver's Assessment of Satisfactions Index was performed and it became more specific for conditions of dementia when it was reduced. Stressors as measured by the Caregiver Burden scale and satisfaction can coexist and assess different aspects of the caregiver's situation. The caregiver can perceive both moderate burden and great satisfaction at the same time, and further studies may help to broaden our understanding of how we can reduce the degree of burden whilst increasing the sense of satisfaction.     

Caregiving demands,job demands,and health outcomes for employed family caregivers of older adults with dementia: Structural equation modeling

Many family caregivers are also employed full- or part-time and are known to be affected by job demands. This study explored the mediating effect of job demands on the relationship between caregiving demands and caregiver health outcomes in primary family caregivers of older persons with dementia in Taiwan (N?=?214). A cross-sectional design using a self-completed structured questionnaire was implemented. Structural equation modeling analyses showed that job demands partially mediated the relationship between caregiving demands and caregiver health outcomes. The indirect effect of caregiving demands on caregiver health outcomes through job demands was 0.208 (95% confidence interval: 0.053 - 0.335). Nurses should evaluate job demands when screening for high-risk caregiver groups vulnerable to high caregiving demand. Interventions aimed at lessening both caregiving demands and job demands may improve caregiver health outcomes for family caregivers of older adults with dementia.     

Assessment scale for caregiver experience with dementia. Development of an instrument in Japan

A great deal of research has been conducted concerning the burden on care-givers of elderly patients with dementia, but only a small number of qualitative studies discuss actual ways individuals with dementia are being cared for and describe the caregiving experience. Scales for assessing caregiver experience have not yet been developed. The aim of this study was to develop an instrument on the basis of the caregiver experience model developed by Kobayashi [Suwa], Masaki, and Noguchi (1993) in Japan. Psychometric evaluations of the scale were conducted. A sample of 116 caregivers were asked to fill out a questionnaire on a self-rating 5-point scale measuring their sense of caregiving burden, and 90 responses were obtained. The data measured with this original scale was subjected to factor analysis and an assessment scale was developed. As a result, the Assessment Scale for Caregiver Experience with Dementia (ASCED) was created. It consists of 24 items, divided into three subscales--the empathetic caregiving experience, the disciplinary caregiving experience, and the resigned caregiving experience. It also divides caregivers into six types. Work needs to be performed not only to further evaluate changes in the caregiving experience through refinement of the ASCED, but also to qualitatively and quantitatively investigate the nature of the care given to elderly individuals with dementia.     

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.     

Responses of elderly spouse caregivers

In this paper three categories of variables were identified to predict spouses' reactions to caregiving roles: patient characteristics, the caregiving environment, and characteristics of the caregiver. Measures of these variables were administered to 159 spouse caregivers. Four domains of caregivers' responses were identified: negative emotional reactions, feelings of responsibility for the patient, feelings of abandonment by family, and impact of caregiving on daily schedules. These domains were influenced most by patient negative behaviors, physical health, and age, and by caregiver age, employment, and emotional status. Amount of assistance, affective support, and hours of care also were predictive of spouse responses.     

Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.     

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.