Co-creating support for adolescents with long-lasting pain: findings from workshops with adolescents, parents, and professionals

TL;DR

This study explores how to better support teens with long-term pain by involving them, their parents, and professionals in designing interventions.

Contribution

The study introduces a co-created, person-centered approach to managing adolescent long-lasting pain through interdisciplinary collaboration and holistic assessments.

Findings

Adolescents with long-lasting pain face barriers like poor communication and coordination between healthcare and school.

School settings and health services are ideal for interventions involving interdisciplinary collaboration and digital tools.

Early holistic assessments and specialized expertise are needed for effective adolescent pain management.

Abstract

Long-lasting pain in adolescents may affect education, social interactions, and is associated with mental health challenges. Current interventions are often suboptimal due to insufficient understanding of the challenges faced by adolescents with long-lasting pain and those who support them. Understanding the management challenges experienced by adolescents with long-lasting pain, along with those faced by their parents, education professionals, and healthcare professionals (HCPs), is crucial for informing person-centered interventions and improving care and outcomes.

This study aimed to gather insights and visions from adolescents with long-lasting pain, along with their parents, HCPs, and teachers, to develop a person-centered intervention for managing pain.

We used a qualitative Action Research approach, employing three workshops with 1) adolescents with long-lasting pain, 2) HCPs and teachers, and 3) parents. Workshops incorporated case vignettes and design-card exercises to foster dialogue, knowledge construction and articulation of insights and visions to inform intervention design. Data were collected through audio recordings, participant artifacts, and field notes, then analyzed using Reflexive Thematic Analysis and matrix synthesis to create a conceptual model highlighting tension points for future interventions.

In three separate workshops, 13 adolescents with long-lasting pain, 16 HCPs and teachers (four physiotherapists, four senior high school teachers, three psychologists, three school health nurses, and two General Practitioners), and four parents participated. Adolescents described pain’s pervasive impact on their education, social lives, and self-identity. Barriers to improvement included limited coordination between healthcare and school, as well as a lack of communication. The school setting and school health services were identified as an ideal setting for interventions. Key visions for interventions included early holistic assessments, enhanced interdisciplinary collaboration with dedicated coordination roles, specialized adolescent-focused expertise, and the use of digital tools for personalized management.

This study brought new insights into the development of a person-centered intervention for adolescents with long-lasting pain, highlighting the impact of pain on those affected and barriers to optimal care. It emphasized the need for including education professionals and school health services in interdisciplinary collaboration, holistic assessments, and improved expertise in adolescent pain management.

The online version contains supplementary material available at 10.1186/s12913-025-13654-0.

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