A qualitative study of the social and emotional needs of adults with cerebral palsy: "it's a terrible gap".

Purpose: We aim to explore the social and emotional needs of adults with cerebral palsy (CP) and their caregivers.

Methods: This qualitative descriptive study included adults with CP between the ages of 20-37 and their caregivers. We conducted 21 semi-structured interviews (7 interviews with adults with CP, 9 with only the caregiver of an adult with CP, and 5 dyads of an adult with CP and their caregiver). Using thematic analysis, we identified themes associated with social and emotional needs.

Results: Three themes were identified: 1) emotional challenges of adjusting to new roles and increased independence; (2) the importance of mental health for adults with CP and caregivers alike; and (3) the value of social supports. Within these areas, a range of specific challenges were discussed, including troubles fulfilling adult roles and responsibilities, managing sadness and anxiety, and connecting with other adults with similar histories and current circumstances.

Conclusions: These findings elucidate our understanding of the social and emotional complexities of navigating adulthood with CP and point to potentially helpful programs to support the unique constellation of needs that are often faced. This may include targeted psychotherapeutic services and structured opportunities to meet other adults with similar histories.