'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents

被引：2

作者：

Kruithof, Kasper ^{[1
]}

Olsman, Erik ^{[2
]}

Willems, Dick ^{[1
]}

Volkers, Karin ^{[3
]}

Kleijwegt, Bas ^{[4
]}

Nieuwenhuijse, Appolonia ^{[1
]}

机构：

[1] Univ Amsterdam, Dept Ethics Law & Humanities, Amsterdam UMC, Room J2-130,Meibergdreef 15, NL-1105 AZ Amsterdam, Netherlands

[2] Protestant Theol Univ, Dept Community & Care, Sect Spiritual Care & Chaplaincy Studies, Groningen, Netherlands

[3] Philadelphia Care Fdn, Res Ctr, Amersfoort, Netherlands

[4] Esdege Reigersdaal, Locat Merel Zuiderlicht, Heerhugowaard, Netherlands

来源：

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES | 2024年 / 37卷 / 02期

关键词：

care professionals; family members; future care and support; group conversation; parents; profound intellectual and multiple disabilities; DEVELOPMENTAL-DISABILITIES; ADULT SIBLINGS; FUTURE; CHILDREN;

D O I：

10.1111/jar.13185

中图分类号：

G44 [教育心理学];

学科分类号：

0402 ; 040202 ;

摘要：

BackgroundPersons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary.MethodWe conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations.ResultsFamily members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it.ConclusionsThe group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

引用

页数：11

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