Uncertainty Among Youth with Chronic Pain, their Parents, and Clinicians
Date
2022-08
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
Abstract
Objective: Uncertainty is inherent to the experience of chronic primary pain (CPP). Diagnostic uncertainty (DU) has been alluded to in the pediatric chronic pain literature; however, the prevalence, facets, impacts, and drivers of this phenomenon have yet to be explored. The objectives of this dissertation were to explore DU among youth with CPP, their parents, and clinicians, and how it is influenced by the clinical encounter. As well, youth and parent intolerance of uncertainty were investigated as potential risk factors in the Interpersonal Fear Avoidance Model of Pain. Methods: Data included samples of youth with CPP seeking treatment in tertiary level care settings, their parents, and clinicians who treat youth with CPP. These samples spanned three geographical locations, including Canada, the United Kingdom, and the United States. Uncertainty was investigated using a multi-method approach. DU was explored qualitatively from the perspectives of youth, parents, and clinicians, as well as quantitatively among youth and parents. Intolerance of uncertainty was investigated quantitatively using self-report measures. Finally, interpretative phenomenological analysis was used to explore components of the clinical encounter that influence youth’s and parents’ experiences of DU. Results: DU is characterized by fear that something more serious is causing youth’s pain, which fuels a search for alternative diagnoses. Approximately one-third of youth with CPP and their parents experience DU, which is linked to poorer youth pain, pain-related constructs, and health-related quality of life. Clinicians also experience DU treating youth with CPP. Components of the clinical encounter, including pain explanations, validation, and messages of uncertainty, influence youth’s and parents’ experiences of DU, which has implications for youth’s engagement in treatment. Results also suggest that parent and youth intolerance of uncertainty contribute to increases in youth pain interference over time through increased pain catastrophizing, parent protectiveness, and youth fear of pain. Conclusions: This dissertation characterized the multifaceted nature of DU among youth with CPP, their parents, and clinicians, and demonstrated that it is common and often debilitating. Further, parent and youth intolerance of uncertainty play important roles as risk factors in the maintenance of pediatric chronic pain over time.
Description
Keywords
chronic pain, pediatric, youth, children, adolescents, parents, diagnostic uncertainty, intolerance of uncertainty, fear avoidance
Citation
Neville, A. (2022). Uncertainty among youth with chronic pain, their parents, and clinicians (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.