Assessment of Self-Determination in Adolescents with Neonatal Brachial Plexus Palsy

Abstract Background The term self-determination refers to decision-making, goal setting, and perseverance to achieve those goals. Numerous studies have established the importance of self-determination to enhance learning and improve postschool outcomes. However, most studies evaluate students with learning disabilities, cognitive impairment, or behavioral disabilities. There is an absence of research on self-determination for adolescents with physical disabilities. Objective To assess self-determination of adolescents with neonatal brachial plexus palsy (NBPP) compared with their typically developing peers via self-reported measures of function. Design Case-control study. Setting Brachial plexus clinic. Participants Twenty adolescents with NBPP (aged 10-17 years) and their parents and 20 age/gender-matched typically developing adolescents and their parents were recruited. Non–English-speaking participants and those with other physical impairments were excluded from study. Methods Participants completed demographic and American Institutes for Research (AIR) self-determination surveys. One of two designated occupational therapists evaluated participant physical function. Main Outcome Measurements A demographic survey and AIR self-determination assessment were administered, and active range of motion measurements in shoulder forward flexion, elbow flexion, elbow extension, forearm pronation, and supination were obtained. Grip/pinch strength, MRC muscle strength, 9-Hole Peg Test, and Mallet scale scores also were evaluated. Results Despite physical differences, adolescents with NBPP presented similar self-determination levels as their typically developing peers. Adolescents with NBPP rated their opportunities to engage in self-determined behaviors at school significantly lower than at home. Both adolescents with NBPP and those in the control group rated their opportunities to engage in self-determined behaviors at school significantly lower than at home. Conclusions Adolescents with NBPP presented similar self-determination scores as their age/gender-matched typically developing peers. These results could be a reflection of our program's patient- and family-centered care approach. Therefore, caregivers and providers should encourage personal development and fulfillment in adolescents with NBPP. Teachers and schools should be aware that opportunities for acquiring self-determination skills might be more limited at school than at home in this age group. Level of Evidence III