It's a Burden But... Having a Sibling with Prader Willi Syndrome: Stress, Growth and Perceived Burden
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.
Faculty Mentor: Dr. Sean Rogers
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