Bekkema Nienke, de Veer Anke Je, Hertogh Cees Mpm, Francke Anneke L
Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands
Netherlands Institute of Health Services Research (NIVEL), Utrecht, The Netherlands.
Palliat Med. 2016 Jul;30(7):625-33. doi: 10.1177/0269216316640421. Epub 2016 Mar 24.
Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research.
To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands.
Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers.
SETTING/PARTICIPANTS: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice.
Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences.
The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.
关怀关系对于根据智障人士的需求定制其临终关怀至关重要。然而，几乎所有关于智障人士临终关怀的研究都是在照顾者中进行的。智障人士对临终关怀关系的看法尚未成为研究的具体重点。
从荷兰轻度智障人士的角度探讨临终关怀中关怀关系的相关维度。
采用名义群体技术进行小组访谈。两名研究人员对访谈进行归纳分析。
设置/参与者：七个小组参与（33人）。纳入标准如下：患有轻度智障，能够决定是否参与并给予知情同意，且未接受临终关怀。所有小组均接受了两次访谈。
发现关怀关系的两个维度：（1）确定、记录并尊重病人的“愿望”。妥善处理护理愿望、“遗愿”和葬礼愿望至关重要：“这关乎他们的生活”。我们发现一种对控制权的强调，这似乎反映了参与者的经历，即尊重自主权并非总是能够实现。（2）“陪伴左右”：病人在实际生活中以及情感、社交和精神层面都需要有人陪伴在身边。参与者特别强调要提供积极的体验。
轻度智障人士的观点凸显了临终关怀对照顾者关系品质的高要求。本研究显示了让智障人士参与临终关怀研究的附加价值和潜力。
