TY - JOUR
T1 - ‘What if I'm no longer around?’
T2 - An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents
AU - Kruithof, Kasper
AU - Olsman, Erik
AU - Willems, Dick
AU - Volkers, Karin
AU - Kleijwegt, Bas
AU - Nieuwenhuijse, Appolonia
N1 - Funding Information: We thank ZonMw (The Netherlands Organisation for Health Research and Development) located in the Hague (the Netherlands), for funding our research project under the programme of ‘Gewoon Bijzonder’ (‘Normally Special’, Grant number: 845004009). Furthermore, we thank all participants for their evaluations of the group conversation. Publisher Copyright: © 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
PY - 2024/3
Y1 - 2024/3
N2 - Background: Persons 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. Method: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Results: Family 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. Conclusions: The 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.
AB - Background: Persons 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. Method: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Results: Family 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. Conclusions: The 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.
KW - care professionals
KW - family members
KW - future care and support
KW - group conversation
KW - parents
KW - profound intellectual and multiple disabilities
UR - http://www.scopus.com/inward/record.url?scp=85179677914&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/jar.13185
DO - https://doi.org/10.1111/jar.13185
M3 - Article
C2 - 38097399
SN - 1360-2322
VL - 37
JO - JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES
JF - JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES
IS - 2
M1 - e13185
ER -