Unique Circumstances and Family Stress: Having a Sibling with Prader-Willi Syndrome

Abstract

Raising a child with neuro-atypical needs is challenging for any family. It is not surprising that many aspects of parental stress, anxiety, depression, and raising children with special needs have many research publications. This study looks at the specific genetic disorder Prader-Willi Syndrome (PWS) and its effects on family members. PWS affects approximately 1 in 10,000 to 1 in 30,000 live births (Magill et al. 2020). Individuals with PWS have multiple symptoms, including hypertonia during infancy, developmental delay, maladaptive behavioral problems (extreme stubbornness and tantrums), scoliosis, strabismus, hypogonadism, and hyperphagia (Holm et al. 1993). Rather than focus on the parental context of raising an individual with PWS, this study will explore the impact of the siblings raised with a brother or sister with PWS. Precisely, this study will measure to what degree these siblings experience stress in their daily lives. This study will target teens from 13-17 years old and adult siblings 18 years and older. The results will be analyzed and compared to siblings raised with brothers and sisters that are neurotypical.

Department: Psychology

Faculty Mentor: Dr. Sean Rogers