The management of pain during pediatric hematopoietic stem cell transplantation: A qualitative study of contextual factors that influenced pain management practices

Abstract Background Children hospitalized following hematopoietic stem cell transplantation (HSCT) experience complex and prolonged pain in response to the intensity of this treatment. Objectives To describe how pain was managed for children during HSCT therapy and how contextual factors related to the clinical environment influenced healthcare providers' and parents' pain management practices. Methods A qualitative case study was conducted and involved semi‐structured interviews at two time points following transplantation (30 and 90 days) with parents ( n = 10) and naturalistic observations of pain‐related care provided to children ( n = 29) during HSCT therapy by their healthcare providers ( n = 10). Semi‐structured interviews were also conducted with healthcare providers ( n = 14). Results The effectiveness of pain management interventions was hindered by the multifactorial nature of pain children experienced, a gap in the provision of psychosocial interventions for pain and a lack of evidence‐based guidelines for the sustained, and often long‐term, administration of opioids and adjuvant medications. Misconceptions were demonstrated by healthcare providers about escalating pain management according to pain severity and differentiating between opioid tolerance and addiction. Parents were active in the management of pain for children, especially the provision of nonpharmacological interventions. Collaboration with external pain services and the impact of caring for children in protective isolation delayed timely management of pain. Conclusions There is a pressing need to create evidence‐based supportive care guidelines for managing pain post transplantation to optimize children's relief from pain. If parents and children are to be involved in managing pain, greater efforts must be directed toward building their capacity to make informed decisions.