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

Pain Med. 2009 Sep;10(6):1018-34. doi: 10.1111/j.1526-4637.2009.00650.x. Epub 2009 Jul 6.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Attitude
  • Child
  • Chronic Disease
  • Decision Making
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Narration*
  • Pain / psychology*
  • Pain Clinics
  • Pain Management*
  • Parents
  • Patient Selection
  • Peer Group
  • Physician-Patient Relations
  • Social Isolation
  • Treatment Outcome