Mothers and siblings of children with Prader-Willi syndrome experience poorer quality of life

By Wendy Packman, JD, PhD
Palo Alto University

What is the issue/problem?
Prader-Willi syndrome (PWS) is a complex genetic disorder characterized by a number of psychological, physical, and behavioral difficulties. An essential part of this condition is hyperphagia (a constant sense of hunger). Multiple studies have indicated that parents/caregivers are at an increased risk for experiencing emotional distress, depression, and anxiety when a child/young adult with PWS has health concerns.

What did you do in your research?
We administered self-report measures to 12 mothers and 13 healthy siblings of children with PWS to assess the mothers’ perception of overall family functioning, the mothers’ psychological health, and their evaluation of siblings’ quality of life. Additionally, we asked siblings about their perceived quality of life and symptoms of post-traumatic stress disorder (PTSD).

What did you find out?
We found out that both mothers and healthy siblings of children with PWS experienced a poorer perceived quality of life compared to samples of children with other complex health conditions. Overall, the mothers and siblings of children with PWS reported difficulties in family functioning, communication, and an increased number of conflicts. Ninety-two percent of the siblings of children with PWS indicated moderate-to-severe symptoms of PTSD.

What are the take-home messages?
Interventions should focus on providing psychosocial support for each member of the family. They should encompass all aspects of life -- emotional, physical, communication, family dynamics, and personal perceptions of disease.

To learn more about these findings contact
Wendy Packman.

Full Journal Article
Mazaheri, M.M., Rae-Seebach, R.D., Preston, H.E., Schmidt, M. Kountz-Edwards, S. Field, N., Cassidy, S. and Packman, W. (2012). Journal of Intellectual Disability Research, in press. Epub ahead of print.