Understanding the Physical, Psychosocial and Health Information Support Needs of Family Caregivers of People with Spinal Cord Injury Living in the Community: A Scoping Review

Informal caregivers of people with spinal cord injury are most commonly family members. Providing ongoing care and support can have a significant impact on caregivers’ physical and psychological health, and quality of life. Despite this there are few evidence-based interventions available that support the specific needs of these caregivers. In order to inform intervention development, this review aimed to explore the physical, psychosocial, and health information support needs of informal caregivers of people with spinal cord injury living in the community. Nine databases were searched for peer-reviewed publications, published between 2010 and 2026, with 23 publications included. Data were categorized into three domains: physical support needs, psychosocial support needs, and health information support needs. The psychosocial impact was the most commonly identified area of need, with identity disruption, emotional burden, and reduced social participation and loneliness reported. Fatigue, sleep disturbance, and musculoskeletal pain or injury were identified as physical impacts of caregiving. Inadequate discharge planning and poor communication with healthcare professionals left caregivers feeling they lacked clear, practical knowledge and had low levels of confidence for their caring role. The review results indicate that more efforts are needed by spinal cord injury specialist centres to prepare and support informal caregivers of people with spinal cord injury.