It’s a burden but… having a sibling with Prader Willi syndrome: stress, growth, and perceived burden
Prader-Willi syndrome, siblings, stress, atypical development, burden, growth
Prader Willi Syndrome (PWS) is a rare genetic disorder affecting approximately 1 in 15000 live births worldwide that presents a spectrum of physiological and neurological-related health challenges. PWS has been extensively studied as it affects parents, however, research on sibling interaction is limited. This study examined to what extent neurotypical siblings with a brother or sister with PWS experience stress in daily life, is there a feeling of growth as a result, and are feelings of burden higher when compared to the general population. Using the Perceived Stress Scale 10, the Post Traumatic Growth Inventory, and the Zarit Burden Interview questionnaires, a comparison between families with a neurotypical -PWS sibling dynamic and non-PWS – sibling dynamic was conducted. The findings between the control and experimental groups indicated similar stress levels, and both groups indicated a moderately high level of stress. No statistically significant difference in personal growth was present. The perception of burden was significantly higher for the neurotypical-PWS group versus the control group. The details of the results indicated that the relationship dynamic between PWS-neurotypical siblings requires further research, and the use of different survey tools may be warranted to better explore this population.
Presented on April 21, 2022 at Student Research Day at MacEwan University in Edmonton, Alberta.
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