Abstract:
BACKGROUND: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. AIM:To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands. DESIGN: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. RESULTS: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. CONCLUSION: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.
journal_name
Palliat Medjournal_title
Palliative medicineauthors
Bekkema N,de Veer AJ,Hertogh CM,Francke ALdoi
10.1177/0269216316640421subject
Has Abstractpub_date
2016-07-01 00:00:00pages
625-33issue
7eissn
0269-2163issn
1477-030Xpii
0269216316640421journal_volume
30pub_type
杂志文章abstract::Objective of this study is to examine physicians' practices regarding information disclosure to terminally ill patients and to their relatives, without informing the patient. A questionnaire had been sent to a random sample of 3014 Belgian physicians from different specialties frequently involved in end-of-life care. ...
journal_title:Palliative medicine
pub_type: 杂志文章,多中心研究
doi:10.1177/0269216308102043
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abstract:BACKGROUND:Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies. AIM:To review the...
journal_title:Palliative medicine
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abstract:BACKGROUND:A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. METHODS:The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East ...
journal_title:Palliative medicine
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journal_title:Palliative medicine
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更新日期:2017-05-01 00:00:00
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pub_type: 杂志文章,多中心研究
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pub_type: 杂志文章,已发布勘误
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更新日期:2016-12-01 00:00:00
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pub_type: 指南,杂志文章,实务指引
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pub_type: 杂志文章,评审
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更新日期:2001-05-01 00:00:00
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