SIGNIFICANCE: There is a wide array of diagnoses in which pediatric chronic pain is a primary symptom, such as complex regional pain syndrome, chronic migraines, fibromyalgia, and reflex neurovascular dystrophy. Parents and their children may differ in their reports of the impact of pain on function. We define an evaluation process that encouraged coassessment of the impact of chronic pain on family functioning to inform family-centered care.

INNOVATION: We examined the effectiveness of an evaluation protocol that encourages the creation of a collaborative family story of the impact of chronic pain on family co-occupations. Using this process, we sought to understand the impact of chronic pain from a person in a family-context perspective.

RESEARCH QUESTION: How do pediatric clients with chronic pain and their families perceive and describe the impact of contextual factors on individual and family functioning?

RATIONALE: Managing pediatric chronic pain is a family co-occupation that affects the health and wellness of all family members (Jastrowski Mano, Khan, Ladwig, & Weisman, 2011; Jordan, Eccleston, & Osburn, 2007). Parents routinely provide reports of their child’s pain intensity and the impact of pain on function, but these reports do not always coincide with the child’s reports (Vetter, Bridgewater, Ascherman, Madan-Swain, & McGwin, 2014), especially when the child is younger (Claar & Walker, 2006) or when the pain is more intense (Garcia-Munitis et al., 2006). Protocols for measuring pain and its impact on function are often taken from the child’s and parents’ perspectives individually. In this study, we compared the illness narratives of pediatric clients and their families using a process in which the family cocreates the story of how pain is managed.

METHOD: In this exploratory, descriptive, qualitative study, we examined demographic characteristics, computed Canadian Occupational Performance Measure (COPM) change scores, and integrated quantitative measures of pain perception. The setting occurred in an input/output rehabilitation program in an urban children’s teaching hospital. Participants included 5 to 40 clients aged 8 to 20 yr (M = 15.70 yr), all with persistent chronic pain, and their families. The sample was 83% female. The measures included

the Demographic Profile (gender, age, diagnosis, participation, etc.), the Pediatric Pain Measure, the Kawa Model Interview, and the COPM. We used descriptive statistics (to analyze demographics), t statistics (to test group differences), code–recode processes, and constant comparative analysis of qualitative data.

RESULTS AND CONCLUSION: Most clients and their families demonstrated a good/excellent ability to apply the components of the Kawa Model. Youths and their families demonstrated the capacity to connect individual and contextual factors to the client’s pain experiences. Limitations of the study included unbalanced representation of gender and no assessment of the family socioeconomic status.

Claar, R. L., & Walker, L. S. (2006). Functional assessment of pediatric pain patients: Psychometric properties of the Functional Disability Inventory. Pain, 121, 77–84. http://dx.doi.org/10.1016/j.pain.2005.12.002

Garcia-Munitis, P., Bandeira, M., Pistorio, A., Magni-Manzoni, S., Ruperto, N., Schivo, A., . . . Ravelli, A. (2006). Level of agreement between children, parents, and physicians in rating pain intensity in juvenile idiopathic arthritis. Arthritis Rheumatism, 55, 177–183.

Jastrowski Mano, K. E., Khan, K. A., Ladwig, R. J., & Weisman, S. J. (2011) The impact of pediatric chronic pain on parents’ health-related quality of life and family functioning: Reliability and validity of the PedsQL 4.0 Family Impact Module. Journal of Pediatric Psychology, 36, 517–527. http://dx.doi.org/10.1093/jpepsy/jsp099

Jordan, A. L., Eccleston, C., & Osburn, M. (2007). Being a parent of the adolescent with complex chronic pain: An interpretative phenomenological analysis. European Journal of Pain, 11, 49–56.

Vetter, T. R., Bridgewater, C. L., Ascherman, L. I., Madan-Swain, A., & McGwin, G. L., Jr. (2014). Patient versus parental perceptions about pain and disability in children and adolescents with a variety of chronic pain conditions. Pain Research and Management, 19, 7–14.