Non-pharmacological interventions for managing sickle cell crisis pain: A qualitative study on adolescents’ and caregivers’ experiences

Sickle cell crisis (SCC), characterized by recurrent acute pain episodes, is the most common reason for hospitalization among adolescents with sickle cell disease (SCD), a common hemoglobinopathy in Nigeria. SCC pain is challenging to manage, undertreated, and adolescents are often stigmatized and labelled as drug seekers. The combined use of analgesics and non-pharmacological interventions (NPIs) is highly recommended for optimal pain management. Studies indicate high usage of NPIs among adolescents, including unsafe interventions. This study aims to explore the experiences of adolescents and caregivers using NPIs to manage SCC pain at home and in Nigerian hospitals. An interpretative descriptive study was conducted, involving semi-structured interviews with 25 participants (15 caregivers and 10 adolescents). Participants were recruited across Nigeria using purposive and snowball sampling methods. Individual interviews were conducted via Zoom, and data were analyzed using constant comparison analysis. Four themes emerged: 1) Usage, 2) Perceptions, 3) Influencing Factors, and 4) Education. Participants reported using 27 NPIs, with varying impacts on the pain intensity and well-being of adolescents and caregivers. Participants held several misconceptions, including relying on NPIs and mild analgesics to manage severe pain despite their ineffectiveness and expecting their adolescents to endure the pain. They sometimes used potentially harmful NPIs such as herbal concoctions. Barriers to utilizing NPIs include the severity of SCC pain and inadequate knowledge of effective NPIs. These findings can inform the development of contextually relevant educational resources on SCC pain management for this underrepresented population in a low-middle-income country. PERSPECTIVE: This article highlights how adolescents and caregivers use non-pharmacological interventions to manage sickle cell crisis pain at home and in hospitals. It discusses challenges and participants' preferred media for receiving education on these interventions, offering valuable insights to develop effective, evidence-based educational interventions.