A multi-centre study of the community needs of people with spinal cord injuries: The first 18 months

Study design: Multi-centre, single cohort. Objectives: To assess the needs, perceived environmental barriers, level of participation and psychological function of spinal cord injured patients living in the community 3-18 months after discharge.Setting:The National Spinal Injuries Centre, Stoke Mandeville, UK.; Princess Royal Spinal Injuries Centre, Sheffield UK.; Midlands Centre for Spinal Injuries, Oswestry, UK. Method: Participants sustaining injury aged 18 or above were recruited from one of three spinal cord injuries units 3-18 months after discharge. Postal packs containing questionnaires, consent forms and information were distributed and a 2-week reminder was sent. Results: Main findings showed community needs to be generally well addressed however psychosocial needs were rated significantly lower than physical. Responses suggested no environmental impact on participation levels, however, qualitative data highlighted delays in accommodation, adaptations and availability of equipment to interfere with transition to community living. A substantial amount of respondents reported significant impact on independence and activity from secondary conditions and pain. Nearly all the sample reported dissatisfaction with their sexual life and these needs were not well addressed. Conclusions: Societal participation continues to be affected by secondary conditions and pain, whereas delays in equipment and structural adaptations impact on the transition to community living. Sexual needs and problems remain an issue for the spinal cord injured population and a need which is left unaddressed in the community.