Exploring Internet needs for the management of adolescent chronic pain : developing digital interventions in context

Chronic pain in children and adolescents is recognised internationally as a long-term health condition, which can have a substantial impact on the quality of life of young people and their families, as well as representing a substantial economic burden across healthcare sectors. The prevalence of chronic pain in children and adolescents varies across diagnoses, age groups and genders. Primary chronic pain is often idiopathic and secondary conditions range from chronic headaches to musculoskeletal pain. The overarching aim of the current thesis is to lay the groundwork for developing a novel online intervention for the management of adolescent chronic pain. The thesis firstly outlines the problem of paediatric and adolescent chronic pain and describes current evidence-based best practices for chronic pain management. This is followed by an outline of methodological approaches to online health intervention development, including the Medical Research Council guidance for developing complex health interventions and the Person-Based Approach to developing digital health interventions. An explanation of how these approaches were used in the thesis, and rationale underpinning the chosen methods, is provided. Theoretical models pertaining to the maintenance and management of chronic pain are outlined, followed by the presentation of three papers. Paper 1 presents a review and content analysis of online interventions that have been developed for the management of paediatric and adolescent chronic pain. Findings highlight that, whilst CBT-based interventions have been largely successful, most interventions do not encompass multidisciplinary pain management. The review identifies that a UK-centric online intervention for paediatric chronic pain has not yet been developed. Paper 2 presents a needs-assessment survey of adolescents with chronic pain and their parents. This study explores needs and preferences of this population for a novel intervention. Findings draw attention to the integration of internet and social media use by young people for pain management purposes. A qualitative content analysis of survey responses reveals that adolescents would endorse a new online pain management intervention. Paper 3 presents a qualitative interview study with adolescents with chronic pain, which further explores the context of internet and social media use in young people. An inductive thematic analysis presents four themes: 'Trustworthy information, or experiences?', 'Diagnostic labels in a digital world', 'The online chronic pain community', and 'A mind and body approach to self-management.' The general discussion presents guiding principles that intervention developers and chronic pain specialists may use when creating or adapting online interventions.