Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study

Spinal cord injury (SCI) occurring during adolescence poses additional challenges because of the concurrent age-specific bio-psychosocial development. Full understanding of the psychosocial dimensions of rehabilitation requires exploration of the patient perspective. The objective of this study was to focus on psychosocial factors from the patient perspective in persons who had previously sustained a SCI during early and mid-adolescence (11-15 years of age).

Twenty-four of the 28 persons who had sustained a SCI in Sweden from 1985 to 1996 participated in the study. Semistructured interviews were made an average of 10 years after injury. Narratives were analyzed qualitatively according to content analysis.

Parents and peers were found to have formed a crucial network. Parents frequently acted as advocates in interactions with health care providers, as supporters, and as containers of sorrow, frustration, and anger. Peers acted as promoters of activity and identity development. However, health care providers were perceived as not making sufficient use of this network.

Rehabilitation professionals might be encouraged to increase their knowledge of adolescence medicine to better meet the specific needs and demands of persons in this age group. It is further suggested that parents and peers be considered important partners in the joint rehabilitation effort.