Psychological adjustment of siblings of children with Prader-Willi syndrome

ABSTRACT

Background

Siblings of children with Prader-Willi syndrome (PWS) may be at elevated risk for poor psychological adjustment (Mazaheri, M. M., Rae-Seebach, R. D., Preston, H. E., Schmidt, M., Kountz-Edwards, S., Field, N., Cassidy, S., Packman, Wet al. (2013). The impact of Prader-Willi syndrome on the family’s quality of life and caregiving, and the unaffected siblings’ psychosocial adjustment. Journal of Intellectual Disability Research, 57(9), 861–873. ; O’Neill, L. P., & Murray, L. E. (2016). Anxiety and depression symptomatology in adult siblings of individuals with different developmental disability diagnoses. Research in Developmental Disabilities, 51, 116–125. ). The current study describes psychological distress and symptoms of post-traumatic stress disorder (PTSD) in non-disabled siblings.

Method

Fifty-eight siblings and 86 parents participated.

Results

Parents reported that almost 40% of siblings had psychological symptoms that exceeded clinical cut-off scores; 58.9% of siblings reported symptoms of PTSD that exceeded diagnostic cut-off scores. Symptoms were significantly related to family organisation and control per parent report and negative affect per sibling report.

Conclusion

Growing up with a sibling with PWS may challenge adaptive resources of non-disabled siblings, leaving them vulnerable to psychological distress. Those who care for children with PWS are in a unique position to educate families about the potential vulnerability of non-disabled siblings. We encourage routine screening and support for affected family members, especially siblings.

KEYWORDS:

• Prader-Willi syndrome
• siblings
• psychological adjustment

Acknowledgements

The authors would like to acknowledge and thank the Utah Developmental Disabilities Council, Dr. David Viskochil, Lisa Thornton, and the Utah PWS chapter.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work is supported by the Utah Developmental Disabilities Council, grant number 1901UTSCDD-02, from the U.S. Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $649,659.00 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.