Understanding the needs of families after NICU discharge to inform a peer support program

Abstract

Study Participants & Setting:A convenience sample of children, ages 10-18, with a diagnosis of either CP or PD were invited into this IRB approved study.Subjects were excluded if unable to read English at a 3rd grade level.Caregivers of eligible participants were also enrolled in the study.Recruitment was through outpatient clinics and a community program for children with PD.Materials/Methods: Surveys were completed by the participant and designated caregiver.Caregiver surveys included demographic information and questions about their child's motor ability, cognitive function, and comorbidities.The participant survey was a modified version of the California Bullying Victimization Scale (CBVS), 2011.This 11-item questionnaire utilized a Likert-type scale to identify whether participants were "bully-", "peer-", or "non-victims" based on the frequency of victimization over the past month and on the presence of a power imbalance.Descriptive statistics were utilized for the preliminary analysis of these surveys.Results: 51 participants met inclusion criteria for the study.44 children had a primary diagnosis of CP and 7 had a PD due to another cause (stroke, muscular dystrophy, etc.).The study included 23 males (45%) and 28 females (55%).The mean age was 14.1 years (range 10.0-18.3y),corresponding to a mean grade level of 8.4.Overall, 16% of participants were considered bully-victims, 39% peer-victims, and 45% non-