"Google It": Experiences of Children and Parents During the Assessment and Diagnosis of Complex Regional Pain...

Complex Regional Pain Syndrome Type I (CRPS-I) is a chronic pain disorder that can affect children most commonly in early adolescence. In comparison to adult literature, there is a sparsity of evidence regarding the effect of CRPS-I on children. This evidence gap contributes to diagnostic delays, affecting children and parents physically, psychologically, and socially. The experiences of children and their parents when receiving a CRPS-I diagnosis have yet to be explored. The current study explored the experiences of children and parents during the assessment and diagnosis of CRPS-I. This qualitative study involved secondary analysis of verbatim interviews with children and their parents from a primary study that explored outcomes of chronic musculoskeletal pain treatment in children aged 11-18 years. Timeline drawings were used as a participatory method and, where possible, children and parents were interviewed separately. Seven children who reported they had received a diagnosis of CRPS-I and their parents were included (n = 14). Transcripts were analyzed using reflexive thematic analysis. Data were analyzed inductively to identify key themes that shaped their experiences before, during, and after diagnosis. Four themes were developed that uncovered a complex journey before, during, and after diagnosis. An overarching theme, Navigating Healthcare, developed alongside three sequential themes: Search for Answers, It's CRPS, and What's Next? This study demonstrates that access to health professionals with the knowledge, experience, and skills to provide rehabilitation for pediatric CRPS may be more important than early diagnosis in influencing CRPS-I outcomes. Care pathways must include guidance for health professionals on how to explain CRPS-I so that no family needs to resort to internet searches to explain this complex condition or navigate their child's care.