Understanding Sickle Cell Disease Pain: Perception from Patients, Parents and Healthcare Providers in Northwestern Tanzania

Background: Sickle Cell Disease (SCD) is a prevalent health concern in sub-Saharan Africa, characterized by painful vaso-occlusive episodes (VOEs) caused by distorted red blood cells. SCD pain is often underestimated, and the psychosocial impact is significant, impeding academic performance and causing social isolation among affected children. Despite its prevalence, research on pain perception and severity in low-resource settings is limited, therefore we set out to understand SCD pain experiences from the perspective of patients, caregivers, and healthcare workers at a sickle cell center in Tanzania.

Methods: A qualitative study design was employed. In-depth interviews were conducted with patients, parents, and healthcare workers at Bugando Medical Center in Tanzania. Participants were recruited using purposively sampling from the hospital ward where they worked or were hospitalized, until the point of data saturation. Interviews were conducted by two interviewers in Swahili, the participants' first language. Interviews were transcribed and analyzed thematically using NVivo 14 software. Two independent researchers coded the data, ensuring alignment through regular debrief meetings.

Results: From January to April 2024, 22 participants, including 8 patients (7-18 years), 7 parents, and 7 healthcare workers were interviewed for 30 to 60 minutes. Provocateurs mentioned by all three groups included cold weather, rigorous physical activity, physical altercations, and emotional stress. Affected children discussed pain occurring in the extremities and joints and spreading to other parts of the body, the relapsing remitting nature of pain, and their difficulty describing the quality of their pain to others. They invariably reported pain as very severe. Children described using distraction, massage, rest, and medication to address their pain. They discussed how others in their social circle do not understand their experience and stigmatization. Parents reported that pain was severe, how difficult it was to watch their child suffer, distrust of traditional/herbal medicine to treat pain, and occasional negative interactions with some healthcare workers. They also say that low parental income and inadequate health insurance impeded care. Healthcare workers reported assessing pain using both objective pain scales and subjective evaluation of body language and facial expressions, especially among younger patients, and the crucial role that parents play. Some reported uncertainty about the genuine nature of pain in adolescent patients who are frequently hospitalized and thought some pain might be imagined or exaggerated. They described using fluids, oral medication, and injectable medication to treat pain as well as counseling, massage, and rest. They emphasized the need for more training for diagnosing SCD and managing SCD pain in children as well as the need for a greater number of experienced healthcare workers.

Conclusion: Children, parents, and healthcare workers understand the severity of SCD pain. Parents and healthcare workers have a strong grasp of SCD assessment. Parents consistently view their children's pain as real, while healthcare workers sometimes perceive it as imagined. Challenges in pain assessment includes the subjective nature of pain and cultural factors. Many health workers lack formal training specific to SCD. A lack of broader community awareness contributes to social stigma. Comprehensive treatment for SCD includes effective hospital coordination and multimodal care. However, challenges like insufficient healthcare workers, low parental income, inadequate health insurance, social stigma, and insufficient training for healthcare workers persist. Addressing these issues could significantly improve SCD pain management in children.

No relevant conflicts of interest to declare.