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.     

Abuse of aging caregivers: test of a nursing intervention

Although most women find it difficult to provide care to an older family member, some women face additional challenges and health risks because the care recipient is abusive or aggressive toward them. This study tested a 12-week psychoeducative nursing intervention intended to decrease the frequency and intensity of physical and verbal/psychological aggression toward older caregiving wives and daughters by care recipients and improve selected abuse-related outcomes. The intervention, which focused on pattern identification, advocacy counseling, reframing of the caregiving situation, and nonconfrontational caregiving strategies, was individualized and highly interactive with emphasis placed on mutual problem solving and mutual planning. Subjects included women older than 50 who provided care to elders older than 55. Subjects were randomly assigned to group (intervention, N = 38; control, N = 45) and data collectors were "blinded" to group assignment. Findings indicated the intervention significantly reduced frequency of verbal/psychological aggression, and feelings of anger for caregivers providing care to fathers or husbands. It was not effective for caregivers providing care to mothers, and it did not reduce burden. Implications for nursing include raising awareness about the special vulnerabilities of older caregivers, providing provocative new information about the gender-based power dynamics in caregiving situations and underscoring the need for nurses to assume a stronger leadership role in building science with regard to family caregiving.     

Analysis of caregiver burden in palliative care: An integrated review

The inclusion of caregivers in a holistic care approach represents a basic principle in palliative care. However, many palliative care professionals have a lack of understanding of difficulties or unmet needs among caregivers. To enhance the quality of life of caregivers and the quality of care for patients, healthcare professionals should be better informed about the constructs of caregiver burden. The aim of this study is to synthesize the concept of caregiver burden in palliative care, providing implications for the caregivers and their support systems. This concept analysis study adopts the integrative review approach and the basic text analysis method (ie, word frequency). The PubMed, CINAHL, Embase, and PsycINFO databases are explored for eligible studies. From this literature search, 66 articles from 1998 to 2018 are located. After data collection is completed, the two authors independently evaluate the quality of studies published before 1 September 2018. The caregiver burden is then redefined with its attributes, antecedents, consequences, empirical referents, and facilitators. It is recommended that the multidimensional concept of caregiver burden in palliative care be measured by considering caregiver characteristics and the caregiving context.     

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 consequences of intergenerational caregiving in Taiwan

AIM: This paper is a report of a study to test a theoretical model of factors related to consequences of intergenerational caregiving among Taiwanese caregivers of cognitively impaired ageing relatives. BACKGROUND: With the ageing of the population worldwide, care of elders has become a pressing issue. Intergenerational caregiving behaviours may reflect cultural values and beliefs, but create conflict for adult children between traditional obligations to ageing parents and the capacity to provide care. METHODS: Adult caregivers (n = 130) of cognitively impaired ageing relatives were recruited from three home care agencies in northern Taiwan between September 2003 and February 2004. Role and attachment theories were combined to extend the understanding of the consequences of intergenerational caregiving. RESULTS: Caregiving consequences (role strain and role reward) were not polar opposites on a unidimensional continuum. Caregiver role conflict and role performance had positive relationships with role strain, whereas caregiving resources and role expectation had an inverse relationship. For caregiver role reward, only role performance and secure-attached style were positively correlated. Role demand was not a statistically significant predictor of either role strain or role reward. Furthermore, secure-attached style explained additional variance in role strain and role reward. Moderating effects involving secure attachment with other predictors of role strain and role reward were supported. CONCLUSION: By incorporating role and attachment theories, our model gives a more complete view of intergenerational caregiving in an Asian culture. These findings may be applicable to other countries with Chinese populations.     

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.     

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.     

Where are the family caregivers? Finding family caregiver-related content in foundational nursing documents

Informal or family caregivers are a substantial component of the U.S. health care system and are essential for addressing the needs of a growing number of U.S. citizens who are aging, managing chronic or disabling conditions, or facing life-limiting illness. The purpose of this study was to examine the representation of family caregiving in a set of foundational documents that shape nursing education, practice standard, and related policy. Electronic copies of these “canonical” documents were systematically mapped for the appearance of language, terms, and concepts related to family caregiving. Additionally, relevant passages of caregiving-related text were coded for content, phrasing, and meaning. Few meaningful references were found, exposing how the nursing profession may also be perpetuating the role of the family caregiver as unsupported and invisible. When present in the documents, family caregivers were generally situated as background or context for patient care, often as objects and less frequently as agents with influence. These findings are considered within the context of the emerging caregiving public health crisis and family caregiver health outcomes, family caregiver integration into the health care team, nursing education and practice standards, nursing leadership and workforce development, and nursing's policy advocacy role.     

Outcomes of family involvement in care intervention for caregivers of individuals with dementia

BACKGROUND: Despite the increasing number of individuals with dementia relocated from caregiving at home to a nursing home, there is only a small body of literature examining the influence of institutional family-oriented practices on family member perceptions of care and family-staff relationships. OBJECTIVE: The study tested the effects of the Family Involvement in Care partnership intervention on family members' perceptions of their caregiving role, relationships with staff, and satisfaction with the care of relatives with dementia residing in special care units as well as the effects on staff attitudes toward families and staff satisfaction with a caregiving role. METHODS: A quasi-experimental design with nonequivalent groups and repeated pretest and posttest measures was used to examine the effects of the Family Involvement in Care intervention. The study recruited 14 Midwestern nursing home special dementia care units, matched by aegis and staff turnover, and randomized from matched pairs to experimental and control conditions. The samples included 185 family members and 895 staff. The Family Involvement in Care intervention is a protocol for family and staff negotiation of a written partnership agreement. Family caregiver outcomes were measured using instruments pretested for reliability and validity. Data were analyzed using hierarchical linear modeling. RESULTS: With adjustment for multiple tests, statistically significant beneficial intervention effects were found in three areas of family caregiver outcomes (emotional reactions to the caregiving role, perceptions of relationships with staff, and perceptions of care for relatives) and in one of three areas of staff outcomes (staff perceptions of the family caregiving role). For family members, effects were found for the measures assessing loss, captivity, staff disregard, resident activities, and physical care. Some of the intervention effects for family members were found only for caregivers of the same generation as the resident. For staff, effects were found for measures of dominion, disruption by family, and irrelevance of family. CONCLUSIONS: The results of the study indicate that the Family Involvement in Care intervention improves the caregiving experience of family members in nursing homes as well as nursing home staff attitudes toward family members. The intervention did not influence the perceived conflict with staff on the part of family caregivers or the perception of a partnership with family caregivers on the part of staff.     

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.     

Caregiver burden: a concept analysis

The development of the concept of burden for use in research lacks consistent conceptualization and operational definitions. The purpose of this article is to analyze the concept of burden in an effort to promote conceptual clarity. The technique advocated by Walker and Avant is used to analyze this concept. Critical attributes of burden include subjective perception, multidimensional phenomena, dynamic change, and overload. Predisposing factors are caregiver's characteristics, the demands of caregivers, and the involvement in caregiving. The consequences of burden generate problems in care-receiver, caregiver, family, and health care system. Overall, this article enables us to advance this concept, identify the different sources of burden, and provide directions for nursing intervention.     

Psychologically abusive behavior by those caring for the elderly in a domestic context

Psychological abuse of elders is a growing but hidden problem. This study attempted to determine whether caregivers psychologically abuse their elderly care recipients and identify risk factors contributing to such abuse. Ninety-two caregivers completed this study. The Demographic Sheet, the Caregiver Psychological Elder Abuse Behavior scale (CPEAB), and the Caregiver's Burden Scale were used to collect data. The CPEAB scores for caregivers of the elderly were 20 to 51 (mean 30.45 +/- 7.03). The level of abusive behavior was positively associated with gender, education level, and caregiver's burden and negatively correlated with age (P < .01-.05), suggesting that female caregivers, caregivers with higher levels of education, and caregivers with high burdens demonstrated more severe psychologically abusive behavior. Burden and age accounted for 25.9% of the variance for abusive behaviors. This study provides preliminary data estimating caregiver psychologically abusive behavior and its related risk factors. Analytical results provide important information for medical and social interventions and policies for improving the quality of life of elderly people.     

Vigilance. Evolution and definition for caregivers of family members with Alzheimer''s disease

The language of caregiving relies heavily on terms that are frequently negative such as caregiver stress and burden, but these are not universally accepted phenomenon. The purpose of this article is to report on the development of caregiver vigilance and to suggest it offers both neutral terminology and a means to include caregivers' perceptions of their supervisory role. The concept of vigilance emerged from a qualitative study of caregivers of family members with Alzheimer's disease. Vigilance is defined as the caregivers' continual oversight of their care recipients' activities. The five key components of vigilance were watchful supervision, protective intervening, anticipating, always on duty, and being there. Vigilant caregivers saw themselves as "on duty" even when they were not "doing things." The findings of this study support caregivers' perceptions of 24-hour-a-day responsibility. Nurses need to realize that caregiver vigilance is not necessarily diminished when professional caregivers intervene or institutionalization occurs. Debriefing caregivers about their unique family caregiving knowledge and incorporating it into caregiving is a key strategy for nurses to use to build caregiver trust and reduce their vigilance time.     

Family caregivers need support with heart failure patients

Millions of family members are serving as caregivers for patients with heart failure and the numbers will continue to rise. It appears that caregivers desire to be involved in the patient's care even when the caregiving tasks average 8 hours per day. Burden, stress, and depression have been found to be significantly associated with the caregiving role in this population. Decreasing any negative aspects of caregiving should be a priority. Alarmingly, caregivers have reported being ignored or made to feel like an outsider by health care providers. Nurses are in a pivotal position to improve patient and caregiver outcomes by including the family caregivers of heart failure patients in all aspects of care and in promoting the well being of the caregiver. This article will highlight the importance of social support on patient and caregiver outcomes, and second, review studies on family caregiving among heart failure patients. Recommendations for nursing practice and further research will be discussed.     

Easing the impact of the family caregiver's role

This article describes problems facing family caregivers of elderly, ill, or disabled people. The physical and emotional impact of caregiving is explored, and the concept of role fatigue is discussed to assist nurses in understanding caregivers' problems and needs. Motivational factors for becoming a caregiver and community sources of support are addressed. Rehabilitation nurses are challenged both to accept the responsibility of identifying caregiver role problems, and to help caregivers obtain assistance that will enable them to continue family members' care in a home environment.     

The vulnerability of family caregivers in relation to vulnerability as understood by nurses

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals.     

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.