Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers

Abstract

Prader–Willi Syndrome (PWS) is a rare neurogenetic disorder that presents with a variety of behaviors that could be considered challenging by caregivers, including excessive food consumption and volatile tantrums. Although these behavior challenges can be dangerous and interfere with successful daily living, previous research suggests that caregivers have trouble accessing effective interventions. Twenty-seven caregivers of individuals with PWS completed a survey to assess their needs and wants for services addressing behavioral challenges related to PWS. The survey was classified into four sections: prevalence of behavioral concerns, current access or barriers to accessing behavioral supports, familiarity with applied behavior analysis (ABA), and specific needs when accessing behavioral services. Data were analyzed using descriptive statistics. Although caregivers reported struggling with behaviors, such as tantrums, repetitive behaviors, and rigidity, many identified barriers to accessing treatment, including difficulty in finding services or practitioners familiar with PWS. Applied behavior analysis shows potential for addressing many of the behavioral challenges associated with PWS reported by caregivers. As caregivers of PWS continue to advocate for ABA-based therapy for the individuals they support, practitioners need to take into account the needs and wants of PWS caregivers and specific behavioral needs of individuals with PWS.