A Study of the Viability of Implementing a Child Development CounsellingProgrammefor Caregivers of Children with Sickle Cell Disease (SCD)Aged 0–3 Yearsin Uganda

Development remains an immediate problem of health concern in Uganda for children who are of lower economic status. Approximately 15,000 babies are born with sickle cell disease (SCD) in Uganda every year. Children with SCD have special healthcare needs, such as physical activity in the form of playing. Play can be challenging for children with SCD. This is because of the fear arising from the symptoms like pain as well as the caregivers’ controls that may hinder their interaction. Play is essential to the cognitive, social, emotional, and physical development of a child. To help support this, the WHO/UNICEF evidence-based Care for Child Development (CCD) programme provides knowledge and skills to caregivers on promoting child development. The skills and knowledge help to minimize the physical, cognitive, and emotional limitations of children who are disadvantaged due to real-life challenges, including illnesses. Previous studies that used CCD focused on acutely ill children. This study aimed to investigate the viability of implementing an outpatient CCD programme among caregivers of children with SCD aged 0 – 3 years in Uganda. This study adopted a mixed-methods design, trained six nurses (n=6) to provide the CCD counselling intervention to n=30 caregivers and collected data from a range of stakeholders. In addition, pre - and post-intervention assessments and interviews were carried out with caregivers. A Pre-existing questionnaire was used to measure any changes in caregiving skills (n=30). Semi-structured interviews (n=12) were carried out with caregivers following the intervention to determine their experiences of caregivers participating in the intervention. A focus group discussion (n=1) and interviews (n=2) were carried out with staff involved in the delivery of the intervention to understand the impact of the intervention at the out-patient clinic setting.The findings revealed knowledge gain and skills acquisition by the caregivers, which led to short-term behaviour change in child stimulation and disciplining of children. Healthcare providers gained new knowledge of child development and the benefits of implementing the CCD programme (namely, they became better counsellors and communicators and gained a sense of triumph). This study is the first study to demonstrate that the CCD intervention can be used in routine practice with caregivers of chronically sick children using available staff at the outpatient clinic. Keywords: Child development, caregivers, Sickle Cell Disease, counselling programme, interventio