| dc.description.abstract | Background; In Uganda, SCD is a major public health concern, with high prevalence rates in certain regions. According to the Uganda Sickle Cell Surveillance Study, the overall prevalence of SCD in Uganda is estimated at 13.3%. Studies have found that the prevalence of SCD varied by region, with the highest rates observed in the northern region (22.2%) and the lowest rates in the central region (5.3%). Sickle cell disease (SCD) in children has significant physical, social, and psychological costs to caregivers. Parental stress is higher in caregivers of children with chronic illnesses, but there is limited research on the daily struggles and experiences of caregivers of children with SCD. This study explored the undisclosed experiences of caregivers in Uganda who are managing children with sickle cell disease, including their coping strategies and resulting outcomes. Methods; we conducted in-depth interviews with caregivers of children living with SCD from the Mulago sickle cell clinic, following their informed consent between June and July 2023, utilizing an interview guide as the primary tool for data collection. The in-depth interviews took 30-45 minutes and 12 participants were recruited, however the principle of data saturation was followed to ensure comprehensive data collection. The collected data was analyzed using an open coding method. Results; three main themes were obtained from the data, experiences, coping strategies and coping outcomes, Experiences of caregivers demonstrated the initial confusion and uncertainty surrounding the disease before a formal diagnosis. Financial strain and lack of support emerged as pervasive challenges, impacting the caregivers' emotional well-being. Coping strategies were diverse, with caregivers resorting to both traditional herbal remedies and modern medical treatments to alleviate pain and manage the disease's symptoms. The coping outcomes were multi-faceted. While caregivers showed resilience in their efforts to manage the disease, they also faced considerable emotional distress and sleep disruptions. The financial burden remained a significant source of stress, impacting their overall well-being. Conclusion; Elevating awareness and knowledge about sickle cell disease within communities is essential. Such awareness can empower caregivers of children living with sickle cell disease, promoting emotional resilience and mitigating family disruptions. | en_US |
