| dc.description.abstract | Loneliness and social isolation are known to increase risk for various negative health
outcomes. These constructs are understudied in disability populations such as Prader Willi Syndrome (PWS) where several risk factors for isolation and loneliness are present. 46 caregivers and 34 individuals with PWS ages 12 and up were recruited via national research organizations for a study evaluating the social network sizes and loneliness levels in PWS. Caregivers completed demographic measures, the Circle of Communication Partners (CCP), the Hyperphagia Questionnaire for Clinical Trials (HQ-CT), the Child Behavior Checklist (CBCL), and the age appropriate Behavior Rating Inventory of Executive Functioning (BRIEF) questionnaires. Individuals with PWS completed a modified version of the Children’s Loneliness and Social Dissatisfaction Scale adapted for use with adults with disability. Social network sizes were negatively correlated with reported levels of loneliness. Behavioral dysregulation as measured by the CBCL was correlated with both social network size and loneliness levels, with the Withdrawn subscale of the CBCL demonstrating predictive value via linear regression analyses. Loneliness and social network size were not found to vary by age, gender, education status, or employment status. Results suggest that loneliness is a significant concern for those with PWS and is perhaps more common in PWS than in other disability populations. Social withdrawal may be a useful indicator of loneliness in the PWS population and could inform future intervention research. | |
