Date Presented 04/22/2023
This study explored the lived experience of children and families affected by pediatric complex regional pain syndrome (CRPS). Understanding this perspective will enable OT practitioners to provide client-centered care for this population.
Primary Author and Speaker: Monica Tay
Additional Authors and Speakers: John V. Rider
PURPOSE: Complex regional pain syndrome (CRPS) is a post-traumatic pain disorder increasingly recognized within the pediatric population (Vescio et al., 2020). It can adversely affect the child’s occupational performance, social participation, and family dynamics. A multidisciplinary approach is recommended for pediatric CRPS and includes occupational therapy (OT) as a key component (Rabin et al., 2017). Despite OT practitioners (OTPs) working with this target population in practice, OT pediatric CRPS treatment is underrepresented in the literature. Additionally, most of the literature focuses on inpatient settings, which are associated with significant barriers to access. To consider more accessible treatment options for pediatric CRPS, outpatient OT treatment should be further explored. The objective of this study was to explore the lived experience of children and their families in relation to CRPS and outpatient OT treatment.
DESIGN: This qualitative study used a phenomenological approach. Participants (n=9) were recruited through flyers posted at outpatient OT clinics. Participants were parents of children diagnosed with CRPS and receiving OT services.
METHOD: One researcher conducted semi-structured interviews with parents both in-person and via teleconferencing software. An inductive analysis approach was used to identify themes and involved line-by-line coding by two separate researchers.
RESULTS: This study found that CRPS has a biological, psychological, and social influence on the child’s occupational performance. The psychosocial considerations of CRPS are often overlooked and invalidated by others, leading to a sense of isolation and psychological distress. Throughout the therapeutic journey, the child and family navigate obstacles that include feelings of helplessness, exploring the therapeutic relationship, and managing expectations. The child’s various client factors influence the lived experience, and the child’s perspective contributes to the rehabilitative process. Outpatient settings typically involve a home program component, and its characteristics can present as supports or barriers to adherence and participation. The parent may hold a perspective of the rehabilitative process that differs from the child’s and may experience occupational imbalance. There is a dynamic interplay between CRPS and family relationships, which include the parent-child dyad and sibling relationships.
CONCLUSION: This qualitative study sheds light on the complex experiences that children and families hold regarding CRPS and OT treatment. It provides support for OTPs treating pediatric CRPS in outpatient settings, facilitating the provision of evidence-based services. Findings encourage OTPs to use a biopsychosocial approach to view the child as a holistic being. OTPs should recognize that the child is the expert on their pain and should consider the child’s perspective throughout treatment. Making OT interventions and the home program engaging and enjoyable can help children maintain motivation. Open communication and collaboration can help children and families regain a sense of control and enhance their self-efficacy. To address the parent’s perspective and family dynamics, OTPs should include the entire family when treating pediatric CRPS. In accordance with the recommended multidisciplinary approach, OTPs should collaborate with the multidisciplinary team to ensure that the child is consistently receiving high-quality services. Impact statement: Insight into the child and family’s lived experience in relation to CRPS and OT treatment will allow OTPs to provide client-centered treatment, leading to improved outcomes for children with CRPS.
References
Barrett, M., & Barnett, P. L. J. (2016). Complex regional pain type 1. Pediatric Emergency Care, 32(3), 185–189. https://doi.org/10.1097/PEC.0000000000000731
Rabin, J., Brown, M., & Alexander, S. (2017). Update in the treatment of chronic pain with pediatric patients. Current Problems in Pediatric and Adolescent Health Care, 47(7), 167–172. https://doi.org/10.1016/j.cppeds.2017.06.006
Vescio, A., Testa, G., Culmone, A., Sapienza, M., Valenti, F., Di Maria, F., & Pavone, V. (2020). Treatment of complex regional pain syndrome in children and adolescents: A structured literature scoping review. Children, 7(11), 245–255. https://doi.org/10.3390/children7110245
Weissmann, R., & Uziel, Y. (2016). Pediatric complex regional pain syndrome: A review. Pediatric Rheumatology, 14(1), 29–38. https://doi.org/10.1186/s12969-016-0090-8
