Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome.
Behavioural support
Complex needs
Prader-Willi syndrome
Trauma informed practice
Journal
Research in developmental disabilities
ISSN: 1873-3379
Titre abrégé: Res Dev Disabil
Pays: United States
ID NLM: 8709782
Informations de publication
Date de publication:
Mar 2021
Mar 2021
Historique:
received:
28
08
2020
revised:
30
11
2020
accepted:
17
12
2020
pubmed:
23
1
2021
medline:
29
7
2021
entrez:
22
1
2021
Statut:
ppublish
Résumé
Behavioural support for young people with Prader-Willi syndrome (PWS) is necessary in home and school environments. The Trauma Informed Practice (TIP) framework has been used to support young people with complex behavioural needs in school settings. To identify parent and professional perspectives on behavioural challenges experienced by young people with PWS and strategies for supports, to inform understanding of how they are aligned with the TIP framework. Semi-structured interviews were conducted with eight families with a 12-21 year old child with PWS, four clinicians and two teachers to investigate the contexts and mechanisms associated with challenging, calm and productive behaviours. Data were analysed using directed content analysis, using TIP principles as a framework. Strategies to support young people with PWS aligned with the four overarching TIP Principles:Empowerment, voice and choice; Creating safe environments; Creating a collaborative environment; and Trustworthiness and transparency. Additional Novel domains included: Behavioural underpinnings, Modifying environments and Supporting family capacity. These novel domains can be used to supplement the TIP framework for guidance on how to support young people with PWS. Development and implementation of strategies to reduce behavioural difficulties in young people with PWS through positive support mechanisms could improve function and social engagement within their families and communities.
Sections du résumé
BACKGROUND
BACKGROUND
Behavioural support for young people with Prader-Willi syndrome (PWS) is necessary in home and school environments. The Trauma Informed Practice (TIP) framework has been used to support young people with complex behavioural needs in school settings.
AIMS
OBJECTIVE
To identify parent and professional perspectives on behavioural challenges experienced by young people with PWS and strategies for supports, to inform understanding of how they are aligned with the TIP framework.
METHOD
METHODS
Semi-structured interviews were conducted with eight families with a 12-21 year old child with PWS, four clinicians and two teachers to investigate the contexts and mechanisms associated with challenging, calm and productive behaviours. Data were analysed using directed content analysis, using TIP principles as a framework.
RESULTS
RESULTS
Strategies to support young people with PWS aligned with the four overarching TIP Principles:Empowerment, voice and choice; Creating safe environments; Creating a collaborative environment; and Trustworthiness and transparency. Additional Novel domains included: Behavioural underpinnings, Modifying environments and Supporting family capacity.
CONCLUSION
CONCLUSIONS
These novel domains can be used to supplement the TIP framework for guidance on how to support young people with PWS.
HEALTH IMPLICATIONS
UNASSIGNED
Development and implementation of strategies to reduce behavioural difficulties in young people with PWS through positive support mechanisms could improve function and social engagement within their families and communities.
Identifiants
pubmed: 33482559
pii: S0891-4222(20)30271-7
doi: 10.1016/j.ridd.2020.103839
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
103839Informations de copyright
Copyright © 2021 Elsevier Ltd. All rights reserved.