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.

Exploring the Outcomes That Matter Most to Young People Treated for Chronic Pain: A Qualitative Study

“…Contrary to positive turning points, negative turning points are yet to be discussed in the literature. Only recently the unexplored detrimental effects of multidisciplinary treatment were established through a similar timeline methodology [ 37 ]. When exploring the literature more widely, the negative turning points, as drawn by youths and shown in Figure 3 , resembled the Kubler-Ross Change Curve [ 38 ] that was expanded to describe the response to loss [ 39 ].…”

A memory-reframing intervention to reduce pain in youth undergoing major surgery: Pilot randomized controlled trial of feasibility and acceptability

“…Given adolescents’ increasing independence and cognitive capacity, playing a more active role in treatment, as well as being given voice and space to share, construct, and reconstruct their experience of pain, is developmentally appropriate and in line with treatment benefits identified by youth with chronic pain. 49 Second, providing a more in-depth rationale for the importance of pain memories before the surgery and/or including the elements of intervention throughout the surgery preparation period would allow youth to better understand and get more invested in the intervention. Third, according to the patient partner, the intervention could be improved by explicitly validating and supporting youth during reminiscing.…”

The effect domains, measures, and methods reported in pediatric‐specialized multidisciplinary outpatient rehabilitation programs: An integrated review

“…To improve compatibility and consistency, careful consideration should be given to the need for qualitative and quantitative assessment approaches, ensuring effects adequately capture what is relevant to youth suffering from chronic pain and their parents, while being interpretable to clinicians and funders. A series of recently published studies by our team, which used targeted designs, carefully selected patient‐reported outcome instruments and novel qualitative methods, all influenced by stakeholder input, provide some initial guidance in addressing these gaps 85,89‐92 …”

“…A series of recently published studies by our team, which used targeted designs, carefully selected patient-reported outcome instruments and novel qualitative methods, all influenced by stakeholder input, provide some initial guidance in addressing these gaps. 85,[89][90][91][92] This review has many strengths. First, the engagement of various stakeholders, including youth with chronic pain who participated in pediatric-specialized outpatient pain rehabilitation, with skills in conducting knowledge syntheses, added novelty to this knowledge synthesis.…”