Title : Caregiver-reported needs assessment for emerging adults with cerebral palsy
Abstract:
Cerebral palsy (CP) is the most common cause of childhood-onset physical disability; it is a group of nonprogressive movement disorders that require coordinated, multidisciplinary care. Adolescents with CP often
face significant challenges during the transition from pediatric to adult healthcare, and no standardized transition tool currently exists for properly managing all psychosocial and medical needs. This study aims to identify unmet transition needs and stakeholder priorities, clarify the relationship of these unmet needs to demographic and clinical profiles, and identify opportunities to intervene using clinic-based support for emerging adults with CP.
This study was conducted at the Phelps Center for Cerebral Palsy. Caregivers of adolescents and young adults with CP aged 12–23 years (N=44) completed a structured demographic and clinical survey assessing needed support (yes/no) in 34 specific areas, grouped into five domains. Each domain’s importance was rated on a 5- point Likert scale. We identified the areas where more than 50% of caregivers reported the need for support. Descriptive statistics, using Spearman’s rho correlations, evaluated associations between demographic/functional variables and perceived importance of each domain. A regression analysis was conducted to predict the total needs and Likert scale results with regard to health insurance profiles, race, and motor abilities.
Participants had a mean age of 17.1 ± 3.29 years. The cohort was 64.6% male and racially diverse. It showed variable functional profiles (GMFCS E+R: 3.91 ± 1.43; MACS: 3.91 ± 1.13; CFCS: 3.23 ± 1.26). Commonly reported unmet needs included access to recreational programs (73%), forming new friendships (68%), and community engagement (68%). Significant negative correlations were observed between functional status measures and the importance of vocational wellbeing, healthy living, and financial management. Vocational wellbeing was inversely associated with impairment across all three scales: GMFCS (ρ = -0.319, p = 0.037), MACS (ρ = -0.455, p = 0.002), and CFCS (ρ = -0.516, p = 0.0004). Additionally, a greater number of reported needs was positively correlated with the importance placed on financial management (ρ = 0.469, p = 0.001), whereas a greater number of cohabitants was negatively correlated (ρ = -0.343, p = 0.023).
Emerging adults with CP face complex functional and societal barriers during transition. The significant association between higher functional impairment and lower prioritization of vocational, daily living, and financial domains may suggest an underlying perception of the child not being cognitively capable of meaningfully participating in those areas. Future research should focus on scalable, individualized transition programs that account for functional variability and reinforce social work infrastructure to support comprehensive, community-integrated care.
