Parenting young people with complex regional pain syndrome: an analysis of the process of parental online communication

Abstract

Introduction:Parenting a young person with complex regional pain syndrome (CRPS) is associated with high levels of parental distress and numerous emotional, informational, and practical challenges. To meet these challenges, parents seek others undergoing similar experiences, both in face to face and online forums.Objectives:The objective of this study was to conduct a qualitative analysis of online forum data to explore the process of parental forum communication regarding parenting a young person with CRPS in online spaces.Methods:A total of 107 forum posts relating to parenting a young person with CRPS were collected from 39 users across 2 public forums. Data were analyzed using thematic analysis.Results:Findings identified 2 themes: “the informal rules of exchanging and receiving network support” and “parents positioning themselves as experts.” The first theme highlighted the varied nature of support sought and provided by parents in addition to social rules associated with the negotiation of this support. The second theme represented an understanding of how parents presented themselves as experts in their young person's pain, both in relation to fellow parents and health care professionals.Conclusion:This study provided a novel insight into support and communicational exchanges between parents of young people with CRPS on online public forums. Findings identified the perceived usefulness of online spaces in terms of parents of young people with CRPS seeking and providing support. Further research can helpfully investigate how we might implement online peer mentoring to improve support further for parents.

What Parents of Adolescents in Residential Substance Use Treatment Want from Continuing Care: A Content Analysis of Online Forum Posts

“…49 Careful analysis of online forum posts has led to new insights in a range of sensitive healthcare topics among parents, including social support among mothers coping with the death of a child 50 and parenting youth with complex pain. 51 This approach has also been used on networking forums for individuals struggling with SU, shedding light on the transition from recreational to problematic use and/or disorder, 52 linguistic predictors of relapse, 53 and the importance of social support during recovery. 54,55 The present content analysis is the first to examine networking forum content from parents of adolescents in residential treatment.…”

Online paediatric chronic pain management: assessing the needs of UK adolescents and parents, using a cross-sectional survey

“…This supports previous investigations of parental online communication on forums for paediatric Complex Regional Pain Syndrome (CRPS) for informational and empathetic support. 44 It is possible that parents in the present study of mixed chronic pain used forums for similar reasons. Only one parent used the NHS website as an information resource, which may indicate an increased need for empathetic support over informational.…”

Pediatric Complex Regional Pain Syndrome and Occupational Therapy Intervention: A Scoping Review

“…Parents and caregivers should be included in the treatment of pediatric CRPS due to the significant involvement between parents, caregivers, and their children (Dickson, 2017). Parents of children with CRPS often consider themselves advocates and experts on their child’s condition but may also experience negative psychological impacts of caring for a child with CRPS (Navarro et al, 2018). As such, it is essential to consider and include parents in the OT care plan.…”