Willingness to use respite care among family caregivers in Northern Taiwan

Aim and objectives. Investigate the use of respite care among family caregivers and examine factors related to their willingness to use such care. Background. Respite care is a pivotal service for supporting family caregivers. Although research related to respite care is not a new field in western societies, such studies have rarely been done for Asian populations. Design. A cross‐sectional study. Methods. The study was conducted using a convenience sample of 100 family caregivers obtained through four home health care agencies in Northern Taiwan. Structured face‐to face interviews were conducted in home settings. Caregivers were divided into a willingness group and a non‐willingness group. The quantitative data were analysed using t‐test, chi‐square and multiple logistic regression. Results. Sixty‐five per cent of the caregivers interviewed did not know about respite care services. The prevalence of respite care use was 11%. Eighty‐nine per cent of the caregivers had never used respite care: 60·7% of them reported that they would never use it and 39·3% of the caregivers indicated that they were willing to use respite care in the future. This study showed that willingness to use respite care was higher when the respite services matched the needs of the caregivers as well as the caregivers perceived higher caregiving burden. Conclusions. These results suggest that respite care services should be explained more explicitly to family caregivers. Also, any respite care plan must consider the family caregivers burden, both perceived and realistically. Relevance to clinical practice. The willingness to use respite care is a culturally sensitive issue. Health care providers must act as advocates to improve respite care policy. They must ensure that respite care fits caregivers’ needs and they must help caregivers overcome the social or cultural barriers to respite care.     

Family caregiver respite and leisure: a feminist perspective

Large numbers of family members, particulary women, find themselves in the stressful roles of caring for their frail elders with dementia. Although caregiver respite is seen as one way to mitigate the negative consequences of care giving, many caregivers are reluctant to use services which offer them respite opportunities. By focusing on the similarities between respite and leisure experiences from a feminist perspective, this caregiver hesitancy will be explored. Interpreting the stories of eight women caregivers participating in a qualitative study which examined the experience of respite for family caregivers of persons with dementia, convergence between the experiences of leisure an of respite occur in at least four areas. These included: the experience of freedom, the getting away from obligatory routine, the pursuit of personally satisfying activities, and bothe as an 'attitude of the mind'.     

Learning through supervision: a case study of respite care

Summary

• ? In this paper a case study is used to explore critically the complexities of caring that faced one of us, K.B., as a relatively inexperienced primary nurse, in working with a ‘respite-care’ family to achieve effective care.
• ? The medium of reflection and supervision is used to describe this experience and the emerging issues.
• ? Through the use of reflection, Kate was able to unravel the complexities of caring and learn to work therapeutically with this family.

     

失智症家庭照顾者积极情绪体验的研究进展

阐述积极情绪体验的概念、测量工具,从研究意义、影响因素、干预措施综述失智症家庭照顾者积极情绪体验的研究进展,以期为开展失智症家庭照顾者积极情绪体验干预研究提供参考。     

Creating avenues for relative empowerment (CARE): a pilot test of an intervention to improve outcomes of hospitalized elders and family caregivers

The purpose of this pilot study was to evaluate the effectiveness of a family caregiver-focused intervention program (CARE) on the outcomes of hospitalized elders and their family caregivers. A randomized clinical trial was conducted with 49 family caregivers of hospitalized elders in a university medical center in upstate New York. Driven by self-regulation and role theories, the two-phase CARE program consisted of: (a). a mutual agreement consisting of family caregiving activities during hospitalization; and (b). audiotaped information regarding emotional responses and possible complications associated with an elderly patient's hospitalization as well as instructions for effectively participating in the elder's hospital care. The comparison program consisted of information about hospital services and policies. CARE elders had fewer incidents of acute confusion reported by family caregivers during hospitalization and fewer depressive symptoms at 2 weeks and 2 months posthospitalization than did the comparison group. CARE family caregivers participated more in the care of their hospitalized elders and had higher scores on role rewards prior to hospital discharge. Findings from this study support the need for further testing of the CARE intervention with family caregivers to determine its effectiveness on outcomes of hospitalized elders and their family caregivers.     

Ranked motives of long-term care providing family caregivers

Family caregivers provide long-term care to their chronically ill loved ones and as a consequence they experience physical, relational and financial problems. This study investigates how long-term family caregivers rank 12 motives for caregiving. Motives are derived from the views of four philosophical anthropologists and are related to self-reported stress and joy and to several different background characteristics of respondents. Motives that focus on feelings concerning the relationship between caregiver and care recipient are more popular as a first choice than motives stemming from feelings of obligation or a general feeling of happiness and are also more popular than more self-directed motives. An analysis of full ranking data shows that two groups can be distinguished, one group of family caregivers with mixed motives and one group of family caregivers with motives that focus on reciprocal mutually equal relationships. The latter are mainly women taking care for a partner or a child, the former report high levels of stress. Implications for intervention programmes and health policy are being discussed.     

老年鼻咽癌病人家庭照护者对缓和医疗需求及相关因素分析

[目的]了解老年鼻咽癌病人家庭照护者对缓和医疗需求的现状,分析相关因素。[方法]采用简单随机抽样法,于2018年2月—2019年8月选取广西医科大学附属第一医院老年鼻咽癌病人的家庭照护者为研究对象。采用自行设计的问卷,调查家庭照护者的一般资料及对缓和医疗的需求情况,分析影响家庭照护者对缓和医疗需求因素。[结果]老年鼻咽癌病人家庭照护者对缓和医疗需求总分为(89.11±14.78)分,其中以照护者精神心理需求的得分指标最高;拟合多元线性回归分析结果显示,年龄、有无照护经验及与病人关系是影响家庭照护者对缓和医疗需求的独立因素(P<0.05)。[结论]老年鼻咽癌病人家庭照护者对缓和医疗需求程度高,且需求愿望与照护者年龄、有无照护经验及与病人关系有关,应具有针对性进行专业知识宣教及心理健康教育,有助于改善家庭照护者的心理状态,优化病人的生活质量。     

Randomized controlled trial of CARE: An intervention to improve outcomes of hospitalized elders and family caregivers

In this randomized controlled trial we tested the efficacy of an intervention program (CARE: Creating Avenues for Relative Empowerment) for improving outcomes of hospitalized older adults and their family caregivers (FCGs). FCG–patient dyads (n = 407) were randomized into two groups. The CARE group received a two‐session empowerment‐educational program 1–2 days post‐admission and 1–3 days pre‐discharge. The attention control group received a generic information program during the same timeframe. Follow‐up was at 2 weeks and 2 months post‐discharge. There were no statistically significant differences in patient or FCG outcomes. However, inconsistent evidence of role outcome differences suggests that CARE may benefit certain FCG subgroups instead of being a one‐size‐fits‐all intervention strategy. Closer examination of CARE's mechanisms and effects is needed. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:533–549, 2012     

Burden of responsibility experienced by family caregivers of elderly dementia sufferers

Eight family caregivers of elderly dementia sufferers participated in in-depth interviews regarding their experiences of giving care. They were selected according to strain, isolation, disappointment and emotional involvement, measured on a 'caregiver burden' scale. Structural analyses of the interviews identified six categories reflecting the feelings and experiences of the caregivers. The first symptom of dementia noted by caregiving husbands was a change in personality, whereas other relatives first observed impaired memory. The dementia sufferers were deemed to be helpless, vulnerable and anxious. The quality of the relationship preceding the onset of dementia had a bearing on the carer's situation. All caregivers felt a heavy burden, especially early in the dementia process. Husbands sustained the heaviest burden; they expressed anger, worry, weariness, guilt, distress and isolation. The caregivers used different problem- and emotion-focused strategies to cope with their situation. Visits to the homesof the elderly, for instance by the district nurse or home help, which should include interviews with close relatives, are recommended in order to disclose early signs of dementia and to prepare further individual support for the family caregivers and their relatives suffering from dementia.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity

This paper reports on a grounded theory interview-based study with 13 family members aged 28-80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. 'Vulnerability' was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver's vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver's vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver's vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability.