Youth and parent perceptions on participating in specialized multidisciplinary pain rehabilitation options: A qualitative timeline effect analysis.

Abstract

Background: Little is known about how the specialized treatment journey is perceived by youth with pain-related disability and their parents. Aims: Describe and compare the treatment effects and outcomes as perceived by youth and their parents enrolled in intensive interdisciplinary pain treatment (IIPT) or multimodal treatment (MMT). Methods: Eleven IIPT youth and five parents and three MMT youth and five parents were recruited. All were asked to complete a treatment journey timeline, followed by separately conducted semistructured interviews. Transcribed interviews were analyzed using reflective thematic analysis. Results: The main themes spanned the treatment trajectory. All participants described similar initial struggles (Theme 1). Positive and negative treatment effects associated with acquisitions and disruptions (Theme 2), and outcomes post-discharge related to supports and realities (Theme 3) emerged. Knowledge, skills, and support acquisition during treatment and feeling empowered and confident to self-manage postdischarge were identified as IIPT benefits. However, the change effort and life disruptions required and the difficulty transitioning to real life postprogram were acknowledged as detrimental IIPT impacts. Continuing with life as usual and maintaining supports in daily contexts (e.g., school personnel, friends) were reported MMT benefits. However, the challenges of managing pain, treatment adherence within the competing demands of daily realities, and the lack of support to integrate strategies were emphasized as detrimental MMT impacts. Conclusions: Detailed impacts of two specialized multidisciplinary pain rehabilitation interventions on the lives of youth with pain-related disability and their parents are described. The treatments benefits and previously unexplored detrimental effects are unveiled.