Factors of positive appraisal of care among Japanese family caregivers of older adults

The purpose of this study was to examine factors of positive appraisal of care among Japanese family caregivers of older adults. The Positive Appraisal of Care (PAC) scale used in this study is a multidimensional Japanese measure and has four domains: relationship satisfaction, consequential gain, role confidence, and normative fulfillment. Three hundred and thirty-seven caregivers participated in this survey. Multiple regression analyses revealed that social support and caregiver belief in caregiving had a consistent impact on all domains of the PAC, whereas the impact of caregiver and care recipient characteristics varied among the domains. For example, caregiver age had a significant impact on role confidence and normative fulfillment but not on relationship satisfaction and consequential gain. The differential impact of caregiver and care recipient characteristics on the domains of the PAC underlines the usefulness of a multidimensional measurement.     

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.     

Men as caregivers: reciprocal relationships or obligation?

Men as caregivers: reciprocal relationships or obligation? ¶This study explored reciprocity in the relationships of men caregivers of cognitively impaired older adults. Reciprocity is a dimension of social support that is important in caregivers’ ability to sustain supportive relationships. Equity theory predicts that inequitable (non-reciprocal) exchanges will result in termination of relationships. The objective of the study was to identify the context in which reciprocity was present or absent, the characteristics of reciprocity in caregivers’ relationships with the care recipient, family and friends, and the men’s feelings about reciprocal social support during caregiving. Twenty-two men caregivers were interviewed three times over 18 months. Study findings were confirmed in a focus group discussion with seven caregivers. Three variations in reciprocity in the men’s relationship with the care recipient were identified: waived reciprocity, generalized reciprocity and constructed reciprocity. Those experiencing constructed or generalized reciprocity described positive feelings, whereas men identifying waived reciprocity described either positive or negative feelings. When reciprocity was absent the men described giving care on the basis of obligation with either mixed or negative feelings. Reciprocity in relationships with friends and family is also described. The study findings support the assumptions of equity theory about reciprocity; however, perceptions of obligation may be better understood in the context of the principles of justice and caring.     

Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.

     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

Do Caregiver Experiences Shape End-of-Life Care Perceptions? Burden,Benefits, and Care Quality Assessment

ContextResearchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.ObjectivesThis study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.MethodsThis study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.ResultsNo or minimal caregiving burden is associated with ≥0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with ≥0.80 probability of giving such reports, even when perceiving high burden.ConclusionCaregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.     

Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.     

Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.     

Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care

BACKGROUND: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. PURPOSE: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. METHOD: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. RESULTS: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. CONCLUSIONS: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.     

Mitigating distress and promoting positive aspects of caring in caregivers of children and adolescents with schizophrenia: Mediation effects of resilience,hope, and social support

Assistance for distressed caregivers can indirectly facilitate recovery of the people being cared for, yet how resilience, hope, and social support mediate between caregiving burden and adjustment outcomes is unclear. A structural equation model was constructed based on data from a cross‐sectional survey of 324 caregivers of children and adolescents with schizophrenia using multidimensional caregiver burden inventory, Connor‐Davidson resilience scale, Herth hope index, perceived social support scale, distress management screening measure, and positive aspects of caregiving instruments. On distress, caregiving burden had a relatively large direct effect, and an indirect effect, mainly mediated by resilience. Resilience had a greater effect than social support or hope on distress. On positive aspects of caregiving (PAC), caregiving burden had only an indirect effect, primarily via the processes from social support and resilience to hope. Hope had a significant direct effect, while resilience and support had moderate indirect effects on PAC via hope. Resilience is an important mediator between caregiving burden and distress, with a greatest effect. Resilience, hope, and social support all mediated between caregiving burden and PAC, with hope having a greatest effect. Reducing the care burden may greatly help to relieve caregiver distress. Providing needed social support, encouraging caregivers to proactively utilize the support, and enhancing resilient coping skills will be helpful in developing resilience and mitigating distress. Health professionals should assess and ameliorate burden, be particularly aware of caregiver hopes, provide formal support, and encourage informal support to promote PAC.     

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.     

Family caregiver perspectives on social relations of elderly residents with dementia in small‐scale versus traditional long‐term care settings in the Netherlands and Belgium

Aims and objectives. To provide insight into family caregiver perspectives on social relations within the ‘caregiving triangle’ between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small‐scale long‐term care settings in the Netherlands and Belgium. Background. Residential dementia care is shifting towards a more holistic and person‐centred approach. Until now, little is known about family caregiver perspectives. Design. A quasi‐experimental longitudinal design. Methods. This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small‐scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the ‘caregiving triangle’. Analyses were performed using mixed models and logistic regression. Results. Compared to traditional settings, family caregivers of relatives with dementia living in small‐scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. Conclusion. In the move towards more person‐centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. Relevance to clinical practice. Gaining more insight into the perspectives of family caregivers on the social relations within the ‘caregiving triangle’ may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.     

Care tasks and impact of caring in primary family caregivers: A cross-sectional study from a nursing perspective

BackgroundFamily caregivers of persons with dementia often experience a negative impact on their health. More studies based on nursing theories are needed to improve the provision of care.AimsTo describe the care provided by family caregivers of persons with dementia and the impact on their health, as well as to analyse how personal variables of caregivers are related to care tasks and their health impact.MethodsMulti-centric cross-sectional prospective study conducted on a sample of 423 primary family caregivers of persons with dementia from Spain. Data were collected through ICUB97-R questionnaire (January–April 2019), based on the fourteen needs of Virginia Henderson's Nursing Model. Data was analysed through one-way analysis of variance and Student's t-test.ResultsThe caregiver profile was a middle-aged married woman without higher education living with the cared person, predominantly her mother. The most frequently provided care corresponded to “nutrition” and “movement” needs. Lack of free time, modifications on leisure activities, reduced sleep or rest and disruption of family life emerged as the greatest repercussions on the caregiver's health. The age of the caregiver and time caring showed differences on impact of care and care tasks, respectively.ConclusionThe identification of the types of care provided, the health impact of caring and the variables affecting the family caregiver's vulnerability is essential to develop effective individualised nursing care plans, including health education interventions to improve the quality of life of both caregivers and persons cared for.     

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.     

Dis/integrated care: family caregivers and in-hospital respite care

AIM: The aim of this study was to explore family caregivers' experiences of in-hospital respite care for people with dementia and the factors that influenced their perceptions of the service. BACKGROUND: The provision of respite care is based on the assumption that temporary relief from caregiving will relieve caregiver stress and may possibly extend the duration of home care. Research evidence suggests that this is a simplistic perspective which fails to account for families' concerns about the quality of institutional care and the impact of relocation on the person being cared for. DESIGN: Nine family caregivers, using four different hospitals sites were interviewed during a period of 3 years from 1994 to 1997. The research texts were analysed using a critical discourse analysis approach drawing on the work of Foucault. FINDINGS: Family caregiver texts were distinguished by difference rather than by homogeneity. Caregivers occupied a range of positions in terms of their ability to take advantage of the respite time intermittent care offered. My reading of these texts has highlighted the aspects of nurse-family relationships that ameliorated, or alternately exacerbated, the tensions felt by caregivers, as they were torn between the necessity to have a break and their anxieties about the impact of in-hospital respite care on the person with dementia. CONCLUSION: Nurses' practices in this study were a critical element in facilitating, or alternately constraining, family caregivers' ability to relinquish care and to take full advantage of the respite time. The research findings highlight the need for nurses and other formal caregivers to locate themselves in a secondary and supporting caregiving role, to acknowledge the family caregivers as the primary caregiver, and use family caregivers in-depth and intimate knowledge of the needs of their relative to inform care within the institutional setting.