Alexandra M. Victoria
Published:
Total Pages: 99
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Prader-Willi Syndrome (PWS) is an incurable chromosomal abnormality that has a life-long impact on individuals with the disorder and their families. PWS is a life threatening condition, which affects various aspects of the body and is known as the leading genetic source for morbid obesity in children (National Institute of Health, 2008). The prevalence of PWS is 1 in 15,000 births, affecting people of both genders, all races, and ethnicities equally (Nolan, 2003). Although food may be a significant threat for individuals with PWS, non-food-related issues must be addressed as well because they lead not only to tantrums and aggressive behavior, but also to hoarding or ritualistic behaviors (Wigren & Hanson, 2003). Individuals with PWS display social and behavioral difficulties throughout their lifespan which eventually leads to a higher risk of isolation and depression (Rosner, Hodapp, Fidler, Sagun, & Dykens, 2004). Individuals with PWS struggle to create a meaningful life with their families. Behavioral problems and ritualistic behaviors often interfere with their ability to develop appropriate social relationships with others and has been correlated to increased levels of stress between family members (Rosner et al., 2004). Many individuals and families seek out social and mental health services but fail to find services tailored to their needs. Individuals and families living with PWS have a profound need for specialized family therapy intervention programs. The purpose of this doctoral project will be to design a program for individuals with Prader-Willi Syndrome and their families that will effectively combine the following evidence-based interventions: (a) components of Multifamily Group Therapy and (b) the Incredible Years parenting program. The program will provide psychoeducation to parents and siblings about the physiological and emotional effects of their family member's disability, improve parenting educational strategies, and provide or expand community support for the entire family system. Furthermore, parents will be educated to understand how adverse family circumstances and chronic parental stress may lead to the development of insecure or disorganized attachments with their children and how it may negatively impact psychological maladjustment for individuals with PWS and their healthy siblings (Rae-Seebach, 2010).