Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL Journal of Applied Research in Intellectual Disabilities Pub Date : 2024-06-11 DOI:10.1111/jar.13267

P. B. Kúld, N. Frielink, C. Schuengel, P. J. C. M. Embregts

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Abstract

Background

This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints.

Method

Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6).

Results

The 285 statements were categorised into 5–7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties.

Conclusion

Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

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根据亲属和医护人员的意见，支持重度或极重度智力和多重残疾人士的自决：概念绘图研究。

研究背景本研究旨在确定亲属和医疗保健专业人员对重度或极重度智障和多重残疾人士自决支持的观点，突出他们观点的一致和差异：在概念图研究之后，在线焦点小组会议产生了来自亲属（养老院：n = 6，家庭养老院：n = 7）和医护专业人员（养老院：n = 9，家庭养老院：n = 5）关于自决支持的声明。参与者对陈述进行分组和评分，最终形成四张由专家解释的概念图（N = 6）：结果：每张概念图将 285 个陈述分为 5-7 组，揭示了支持自决的关键策略：沟通和选择（通过辅助工具提供便利）、敏感性、熟悉度以及参与各方之间的合作：每个小组对这些策略的重视程度不同，突出了在实施过程中持续支持的重要性。未来的研究应优先考虑这些策略的实际实施，以增强自决能力。

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.