Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives.

STUDY DESIGN: Cross-sectional survey.

OBJECTIVES: To examine caregivers' perspectives on the effectiveness of rehabilitative support experienced by youth with spinal cord injury (SCI) during acute rehabilitation and after community reintegration in terms of their community participation.

SETTING: Data collection took place at the three Shriners SCI hospitals: Chicago, Philadelphia, and Northern California.

METHODS: A total of 132 primary caregivers of youth with SCI completed a survey on what their child had experienced during and after rehabilitation to enhance their community participation.

RESULTS: Caregivers found technical support from staff (41%), motivation and encouragement from staff (25%), and education (17%) to be the most important factors during rehabilitation for encouraging their child's future participation in school or community activities. Caregivers found involvement in activities (30%), personal resilience (22%) and interactions with others with disabilities (13%) to be important experiences since rehabilitation in terms of their child's participation in school and community activities. Caregivers who responded that something they experienced during rehabilitation was helpful to participation had children who had been injured longer and who were older at time of injury. In addition, caregivers who reported that something they have experienced since their child's rehabilitation has been helpful in terms of participation also had children who were older at time of injury.

CONCLUSIONS: Findings from this study can be used to help professionals tailor rehabilitation programs to better meet the needs of youth with SCI and their families, thereby increasing chances of successful reintegration back into their communities.