Examining Experiences of Acute and Chronic Pain Among Individuals with Sickle Cell Disease (SCD) in Jamaica and Cameroon

Introduction: Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy that causes red blood cell sickling and blockage of blood vessels that result in painful debilitating vaso-occlusive crises (VOC). Yet, individuals with SCD face negative stereotyping and stigmatization when accessing healthcare that contribute not only to feelings of shame, anger and distrust towards providers, but also to serious complications and poor outcomes. Comparison of individuals' experiences, assessment and management of VOC across different cultural landscapes may identify intervenable targets that could improve overall care and outcomes of SCD.

Methods: This is a transnational qualitative research study that examined the perceptions, treatments and socio-economic impacts of pain in participants living with SCD in Jamaica (n= 31) and Cameroon (n=50). Participants completed semi-structured interviews that were collectively examined for themes and differences in experiences with acute and chronic pain. Analysis was completed using NVivo 12.

Results: Both Jamaican and Cameroonian participants reported diverse psychosocial, physical and health causes of their VOC including, strenuous physical activity, intense emotionality, unhealthy lifestyle behaviors, other health conditions and extreme weather conditions. Similarly, both had challenges communicating the severity and type of VOC pain to providers when accessing healthcare for themselves and their children. Furthermore, both reported providers' reliance on non-validated forms of pain assessment (Cameroon > Jamaica) such as behavioral cues rather than standardized numerical or visual scales that participants believed were easy-to-use and capable of improving the assessment and treatment of VOC. Jamaican participants also experienced more positive, less-discriminatory practices treating their VOC in specialized vs. unspecialized SCD public and private clinical settings. At least half of all participants reported satisfaction with overall provider treatment of VOC. Both Jamaican and Cameroonian participants primarily used non-opioid pain analgesics, daily folic acid and distraction rather than hydroxyurea to manage their acute and chronic VOC pain and thereby, presented late for treatment of unbearable pain. Participants also reported using both traditional medicine and lifestyle changes to maintain a positive mindset and decrease the occurrences of VOC. Lifestyle changes included eating a healthy diet, engaging in relaxation activities and mindfulness techniques (massages, breathing exercises, listening to music and resting). All participants were interested in learning about alternative methods of managing their VOC pain.

Conclusion: The use of validated numerical and visual pain scales as well as the implementation of specialized SCD facilities in the public and private clinic settings may help eliminate communication barriers and discriminatory practices to improve overall satisfaction and treatment of VOC in SCD.