Background

Chronic or recurrent non-malignant 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

53 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 and 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.

Concusions

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.

This paper uses a mixed-methods approach to examine the impact of pain-associated functioning limitations on children's lives and the strategies they develop to try to continue functioning. Forty-five children ages 10-18 completed standardized questionnaires and participated in semistructured interviews prior to intake at a university-based tertiary clinic specializing in the treatment of pediatric chronic pain. All the children reported that pain limited their functioning in everyday activities and that these limitations caused them frustration and distress. Qualitative analysis identified three distinct functioning patterns or groups, which were designated as Adaptive, Passive, and Stressed. The groups did not differ significantly in demographics or clinical pain characteristics. Adaptive children continued to participate in many activities and were more likely to realize that focusing on pain would heighten their perception of pain. Children in this group reported more effective use of distraction and of other independently developed strategies to continue functioning. Passive children had given up most activities, tended to use passive distraction when in pain, and were more likely to feel isolated and different from peers. Stressed children described themselves as continuing to function, but were highly focused on their pain and the difficulties of living with it. The qualitative groupings were supported by quantitative findings that Stressed children reported a higher degree of social anxiety than did Passive children and were more likely than the other groups to report experiencing pain throughout the day. Finally, Adaptive children were rated by their parents as having better overall health compared to Passive children.