Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome

Cara Schofield; Karen Martin; Catherine S Choong; David Gibson; Rachel Skoss; Jenny Downs

doi:10.1016/j.ridd.2020.103839

Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome

Res Dev Disabil. 2021 Mar:110:103839. doi: 10.1016/j.ridd.2020.103839. Epub 2021 Jan 20.

Authors

Cara Schofield¹, Karen Martin², Catherine S Choong³, David Gibson⁴, Rachel Skoss⁵, Jenny Downs⁶

Affiliations

¹ School of Population and Global Health, University of Western Australia, Western Australia, 6009, Australia; Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, Western Australia, 6872, Australia.
² School of Population and Global Health, University of Western Australia, Western Australia, 6009, Australia.
³ Department of Endocrinology, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Perth, 6009, Australia.
⁴ School of Special Educational Needs, Perth Children's Hospital, 15 Hospital Avenue, Nedlands, Perth, 6009, Australia.
⁵ Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, Western Australia, 6872, Australia.
⁶ Telethon Kids Institute, University of Western Australia, PO Box 855, West Perth, Western Australia, 6872, Australia; School of Physiotherapy and Exercise Science, Curtin University, Perth, Western Australia, Australia. Electronic address: Jenny.Downs@telethonkids.org.au.

PMID: 33482559
DOI: 10.1016/j.ridd.2020.103839

Abstract

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: 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: 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: 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: These novel domains can be used to supplement the TIP framework for guidance on how to support young people with PWS.

Health implications: 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.

Keywords: Behavioural support; Complex needs; Prader-Willi syndrome; Trauma informed practice.

MeSH terms

Adolescent
Adult
Child
Humans
Prader-Willi Syndrome*
Young Adult