Henriksson Anette, Carlander Ida, Årestedt Kristofer
Palliative Research Centre,Ersta Sköndal University Collage and Ersta Hospital,Stockholm,Sweden;Capio Geriatrics, Palliative care unit,Dalens hospital,Stockholm,Sweden;Department of Neurobiology, Care Sciences and Society, Division of Nursing,Karolinska Institutet,Stockholm,Sweden.
Palliative Research Centre,Ersta Sköndal University Collage and Ersta Hospital,Stockholm,Sweden;Department of Learning, Informatics, Management and Ethics Medical Management Center,Karolinska Institutet,Stockholm,Sweden.
Palliat Support Care. 2015 Dec;13(6):1509-17. doi: 10.1017/S1478951513000540. Epub 2013 Oct 16.
Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.
The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age.
Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.
Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.
姑息治疗中的家庭照顾者似乎在承受负担和负面情绪的同时，也体验到了照顾带来的回报。相对较少的研究关注姑息治疗中家庭照顾的积极和有益方面。此外，大多数关于回报的研究都是回顾性的，且考察的是失去亲人的家庭照顾者的经历。本研究旨在描述正在接受姑息治疗的家庭照顾者的回报感受。另一个目的是比较不同性别和年龄和性别的回报体验。
样本包括125名家庭照顾者，研究在三个专科姑息治疗病房和一个血液科进行。参与者回答了一份问卷，其中包括人口统计学背景问题和照顾者回报量表（RCS）。采用描述性统计来描述参与者的特征和回报水平。使用曼-惠特尼U检验来比较不同性别和年龄组之间的差异。
姑息治疗中的家庭照顾者普遍报告了较高水平的回报。最大的回报来源是觉得自己对患者有帮助。其次是给予患者能带来快乐的东西以及陪伴在他们身边。最小的回报来源与个人成长、自我满足和个人意义有关。回报与年龄之间也存在关联，但与性别无关。
尽管处于独特且压力重重的状况下，家庭照顾者在持续的姑息治疗过程中仍体验到了照顾的回报。回报感似乎在于以令人满意的方式处理某种情况，感觉有能力且自信地照顾患者，从而感到自豪。支持措施最好旨在提高家庭照顾者的照顾能力，促进照顾的积极方面和回报，并关注优势和资源。
