دورية أكاديمية
What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.
| العنوان: | What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study. |
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| المؤلفون: | Bruun A; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Cresswell A; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Jordan L; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Keagan-Bull R; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Giles J; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Gibson SL; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Anderson-Kittow R; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK., Tuffrey-Wijne I; Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK. |
| المصدر: | Palliative medicine [Palliat Med] 2024 Jun; Vol. 38 (6), pp. 669-678. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: SAGE Publications Country of Publication: England NLM ID: 8704926 Publication Model: Print Cited Medium: Internet ISSN: 1477-030X (Electronic) Linking ISSN: 02692163 NLM ISO Abbreviation: Palliat Med Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: London : SAGE Publications Original Publication: London : New York, NY : Cambridge University Press, North American distributors, Edward Arnold ; c1987- |
| مواضيع طبية MeSH: | Intellectual Disability*/psychology , Focus Groups* , Terminal Care*/psychology , Caregivers*/psychology , Advance Care Planning* , Qualitative Research*, Humans ; Female ; Male ; Adult ; Middle Aged ; Health Personnel/psychology ; United Kingdom ; Aged ; Attitude of Health Personnel |
| مستخلص: | Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. |
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| فهرسة مساهمة: | Keywords: Intellectual Disability; advance care planning; death; focus groups; social support; terminal care |
| تواريخ الأحداث: | Date Created: 20240606 Date Completed: 20240606 Latest Revision: 20240609 |
| رمز التحديث: | 20240609 |
| مُعرف محوري في PubMed: | PMC11157974 |
| DOI: | 10.1177/02692163241250218 |
| PMID: | 38842172 |
| قاعدة البيانات: | MEDLINE |
Full Text Finder | تدمد: | 1477-030X |
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| DOI: | 10.1177/02692163241250218 |