"I can't be what I want to be": children's narratives of chronic pain experiences and treatment outcomes.

BACKGROUND

Chronic or recurrent nonmalignant pain is a significant problem for many children and adolescents and often limits the child's participation in normal physical, academic, and social activities.

OBJECTIVE

To better understand the impact of chronic or recurrent pain on children within the context of their own lives and experiences, using qualitative analysis, and to suggest the applications of the narrative method to clinical practice.

DESIGN

Grounded theory and narrative analysis of in-depth semi-structured interviews conducted at baseline and 6-12 months following clinic intake.

SETTING

Subject homes.

PATIENTS

Fifty-three children ages 10-17 presenting with recurrent pain to a university-based pain clinic. This sample did not differ significantly from the overall clinic population during the study period.

RESULTS

Five common themes were identified; these suggested that isolation, changed self-perception, activity limitations, concerns about barriers to future goals, and lack of medical validation were important to the children's perceived impact of pain on their lives. Five narratives were identified, each of which provided a coherent, integrated description of the factors and perspectives presented by a specific subset of children at baseline. These narratives were then compared against the children's reports of improvement in pain and functioning at 6-12 months; from this comparison, a sixth narrative of therapeutic change emerged for some of the children.

CONCLUSIONS

The authors suggest that physicians and parents who take the initiative to elicit the child's narrative can help the child to rewrite the story to promote therapeutic change, a better outcome, and higher satisfaction.