Using a trauma informed practice framework to enhance understanding of and identify support strategies for behavioural difficulties in young people with Prader-Willi syndrome.
Add three PWS-specific domains—behavior triggers, room changes, and family strength—to your trauma-informed plan.
01Research in Context
What this study did
Cara et al. (2021) talked with families and school staff who support young people with Prader-Willi syndrome.
They asked what helps when behavior gets hard.
The team sorted answers through a trauma-informed lens and added PWS-specific pieces.
What they found
Families and teachers agreed on three new focus areas.
These are: why the behavior starts, how to change the room, and how to keep the family strong.
All tips still fit the core trauma-informed ideas of safety, trust, and choice.
How this fits with other research
Shearn et al. (1997) showed staff often grab quick fixes that break best-practice rules.
Cara’s team keeps the trauma frame but adds the same call to look at staff beliefs.
Koegel et al. (2014) found moms who think the child is “doing it on purpose” give more criticism.
Cara’s “family capacity” domain lines up: change parent thoughts first, then teach skills.
Lecavalier et al. (2006) proved conduct problems spike parent stress.
Cara answers by putting caregiver support inside the behavior plan, not after.
Why it matters
You can copy the four-part checklist in your next FBA.
Start with safety and choice, then ask why the behavior starts, how the room feeds it, and what the family needs to stay steady.
Share the list with teachers and parents so everyone uses the same trauma-wise lens.
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02At a glance
03Original 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.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2020.103839