Strengths and challenging behaviors in children and adolescents with Prader-Willi syndrome: Two sides to the coin

Jenny Downs, A. Marie Blackmore, Wai Chen, Gillian M. Nixon, Catherine S. Choong

Research output: Contribution to journalArticleResearchpeer-review


Prader-Willi Syndrome (PWS) is a rare genetic disorder associated with emotional/behavioral disturbances. These difficulties are well documented in the literature, but the positive attributes of these individuals are not described. Taking a strengths-based approach, the aim of this study was to describe the emotional/behavioral strengths and difficulties in children and young people with PWS from their parent caregivers' perspectives. Parent caregivers of 52 individuals with PWS aged 4–24 years (median = 12.1 years; including 22 males) completed the parent form of the Developmental Behavior Checklist (DBC-P), including its original two open-ended questions regarding positive traits. Prevalences of emotional/behavioral disturbances were comparable to those reported in previous literature: common behaviors of concern across studies being skin-picking (75%), impulsivity (69%), poor sense of danger (67%), lying (67%), and tantrums (54%). Total DBC-P scores showed that just over half (n = 28, 54%) had scores indicative of clinically significant behavior problems. However, thematic analysis of caregivers' written comments regarding their children's strengths resolved into three themes: warmth (94%), persistence (41%), and skills (41%). Warmth encompassed friendliness, happiness, and empathy. A strength-based approach to behavioral difficulties in PWS provides a more balanced view of the children and a more holistic foundation for interventions.

Original languageEnglish
Pages (from-to)1488-1496
Number of pages9
JournalAmerican Journal of Medical Genetics, Part A
Issue number5
Publication statusPublished - May 2022
Externally publishedYes


  • behavior disturbance
  • Prader-Willi syndrome
  • strengths-based

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