A qualitative study of the social and emotional needs of adults with cerebral palsy: "it's a terrible gap"
Prepared by: AACPDM Digest reviewer/Manjula Manikandan, PhD
Keywords:
- Adults
- Cerebral palsy
- Social needs
- Emotional needs
Study type: Qualitative descriptive study
Summary: This qualitative descriptive study explored the social and emotional needs of adults with cerebral palsy (CP) and their caregivers by conducting 21 semi-structured interviews with adults aged 20–37 years and/or their caregivers. Seven interviews included only adults with CP, nine included only caregivers, and five included both an adult with CP and their caregiver. Through thematic analysis, overarching themes associated with social and emotional needs were identified, and illustrative quotes were collected.
Participants described significant challenges adjusting to adult responsibilities, including self-advocacy, loss of structured supports after high school, and barriers to housing, employment, and healthcare. Some adults expressed anxiety and uncertainty about meeting societal expectations, while others embraced new independence. Both adults and caregivers reported frequent experiences of loneliness, depression, and anxiety, often intensified during life and healthcare transitions. Many struggled to access psychotherapeutic approaches delivered by providers with expertise in developmental disabilities. Caregivers reported emotional strain, isolation, and a strong need for peer support to sustain their caregiving role.
Social connection played a central role in participants’ well-being. However, opportunities to connect with peers who share similar experiences were limited. Suggested solutions included adaptive recreation, mentorship programs, structured online and in-person gatherings, group therapy, and facilitated social events.
Participants recommended embedding mental health professionals into adult CP clinics, incorporating psychotherapeutic approaches, routinely screening for emotional well-being, and creating flexible, accessible community programs tailored to diverse functional abilities. These findings highlight the need to integrate emotional and social supports alongside physical health services in adult CP care, addressing systemic, environmental, and attitudinal barriers to improve quality of life and participation.