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

P B Kúld; Noud Frielink; C Schuengel; P.J.C.M. Embregts

doi:10.1111/jar.13267

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

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

Research output: Contribution to Journal › Article › Academic › peer-review

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.

Original language	English
Article number	e13267
Pages (from-to)	1-15
Number of pages	15
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	37
Issue number	4
Early online date	11 Jun 2024
DOIs	https://doi.org/10.1111/jar.13267
Publication status	Published - Jul 2024

Bibliographical note

Funding

This study was funded by ZonMw, the Netherlands Organization for Health Research and Development (grant number: 641001105). This study has not been published before and is not being considered for publication elsewhere. All authors contributed to the manuscript agree to the order of authors as listed on the title page. The authors would like to thank the relatives and healthcare professionals who participated in this study.

Funders	Funder number
ZonMw	641001105
ZonMw

Keywords

Humans
Intellectual Disability/psychology
Personal Autonomy
Adult
Male
Health Personnel/psychology
Female
Family/psychology
Middle Aged
Disabled Persons
Qualitative Research
Focus Groups
Young Adult
Attitude of Health Personnel

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10.1111/jar.13267Licence: CC BY-NC

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Kúld, P. B., Frielink, N., Schuengel, C., & Embregts, P. J. C. M. (2024). Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study. Journal of Applied Research in Intellectual Disabilities, 37(4), 1-15. Article e13267. https://doi.org/10.1111/jar.13267

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

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.",

keywords = "Humans, Intellectual Disability/psychology, Personal Autonomy, Adult, Male, Health Personnel/psychology, Female, Family/psychology, Middle Aged, Disabled Persons, Qualitative Research, Focus Groups, Young Adult, Attitude of Health Personnel",

author = "K{\'u}ld, {P B} and Noud Frielink and C Schuengel and P.J.C.M. Embregts",

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year = "2024",

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language = "English",

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Kúld, PB, Frielink, N, Schuengel, C & Embregts, PJCM 2024, 'Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study', Journal of Applied Research in Intellectual Disabilities, vol. 37, no. 4, e13267, pp. 1-15. https://doi.org/10.1111/jar.13267

Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study. / Kúld, P B; Frielink, Noud; Schuengel, C et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 37, No. 4, e13267, 07.2024, p. 1-15.

Research output: Contribution to Journal › Article › Academic › peer-review

TY - JOUR

T1 - Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals

T2 - A concept mapping study

AU - Kúld, P B

AU - Frielink, Noud

AU - Schuengel, C

AU - Embregts, P.J.C.M.

PY - 2024/7

Y1 - 2024/7

N2 - 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.

AB - 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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KW - Intellectual Disability/psychology

KW - Personal Autonomy

KW - Adult

KW - Male

KW - Health Personnel/psychology

KW - Female

KW - Family/psychology

KW - Middle Aged

KW - Disabled Persons

KW - Qualitative Research

KW - Focus Groups

KW - Young Adult

KW - Attitude of Health Personnel

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M1 - e13267

ER -

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

Abstract

Bibliographical note

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Keywords

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