Dissemination of pediatric chronic pain research. Views from patients, caregivers, and healthcare professionals

Abstract

Introduction: Around 25% of children and adolescents report chronic pain, which is often associated with a range of negative consequences. Targeted dissemination of research findings is crucial to inform patients, families, and healthcare professionals about chronic pain and its treatment. To do so, a key step is to identify the knowledge needs of the targeted audience, and to determine how to best reach them. Objective: We investigated satisfaction with current knowledge transfer concerning pediatric chronic pain and its treatment amongst adolescents with chronic pain, their parents, and healthcare professionals. Methods: Focus groups and semi-structured interviews with adolescents with chronic pain, parents of children with chronic pain, and healthcare professionals were carried out. The discussions and interviews were analyzed applying structural content analysis. Results: Three adolescents with chronic pain, four caregivers and twelve healthcare professionals from Switzerland participated in the study. Patients and caregivers highlighted barriers related to social, medical, organizational, and information-specific areas, and expressed a strong desire for more tailored and accessible support. Participants emphasized the importance of recipient-specific dissemination strategies that address both informational preferences and contextual realities. Healthcare professionals, while well-networked within Switzerland, emphasized the importance of access to pediatric research data, specifically from Swiss populations. Conclusion: Dissemination of scientific results on pediatric chronic pain to those who need it remains inadequate. The findings highlight the urgent need for pain education resources targeted to the different audiences, ensuring that affected families and healthcare providers are equipped with the information they need. Plain Language Summary: Chronic pain affects about 1 in 4 children and teenagers, yet many young people with chronic pain, their families, and healthcare professionals struggle to find reliable, easy-to-understand information about it. We wanted to understand what information people currently use, what information they wish they had, and what barriers they face when searching for it. We spoke with three teenagers with chronic pain, four parents of children with chronic pain, and twelve healthcare professionals in Switzerland who work with young patients with pain. Through group discussions and individual interviews, we learned about their experiences and needs. Teenagers and parents told us they feel overwhelmed by online information, and struggle to know which sources to trust. They wished doctors had more time to explain things clearly and provide simple summaries to take home. Many felt healthcare professionals did not take their pain seriously or did not know enough about chronic pain in young people. They also said society does not understand that chronic pain is real and deeply affects youth’s daily lives. Healthcare professionals explained that they rely on scientific research and colleagues for information, but emphasized there is not enough research on children and teenagers with chronic pain in Switzerland. They want more treatment guidelines and better training. These findings show that everyone affected by pediatric chronic pain needs better access to clear, trustworthy information tailored to their needs. Creating centralized resources, improving medical training, and raising public awareness about chronic pain in young people are essential steps forward. Keywords: pediatric chronic pain, information dissemination, adolescents, caregivers, healthcare professionals