Experiences of Caregivers and Care Needs of Children with Congenital Heart Disease at Kenyatta National Hospital

Abstract Background Congenital heart disease (CHD) is a commonly diagnosed congenital disorder that affects approximately 0.8–1.2% of live births worldwide. This disorder has been significantly associated with an increased burden of care among caregivers. Thus, understanding the experiences and care needs of these children would be fundamental in defining an improved focus on their wellbeing. However, in the local context, these components have not been fully investigated. Purpose of the study: To assess the experiences of caregivers and the needs of children with congenital heart disease at Kenyatta National Hospital. Methods This study adopted a cross-sectional method utilizing both qualitative and quantitative approaches. The quantitative arm was conducted before the qualitative arm. The quantitative data were collected consecutively from caregivers of children attending clinics and those admitted to pediatric wards. Descriptive analysis was performed to describe the study population, where frequencies and percentages were used for categorical data and means and standard deviations were used for continuous data. Logistic regression was used to investigate factors associated with caregiver mental wellbeing. Thematic analysis was performed to develop themes from the qualitative data. Results A total of 79.3% of the caregivers were female, 40.7% had secondary-level education, and 64% were unemployed. The mode of delivery was also assessed, where 78% of the mothers had vaginal deliveries. The common types of CHD identified included atrioventricular septal defects (AVSDs) (32.7%), patent ductus arteriosus (PDA) (28.2%) and atrial septal defects (ASDs) (10.5%). The results also revealed that 40.7% had medical insurance, 22.7% received some form of financial support from the government, and 39.3% were able to perform some physical activities. The assessment of the mental well-being of the caregivers revealed that 68% had depression and 73% had mild/moderate burnout. Four main themes and seven subthemes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about the future and coping strategies. Conclusion The findings revealed that the level of depression and burnout among caregivers of CHD patients is high, which highlights the need to ensure that the needs of these children are met. The creation of strong support groups should be integral in championing the needs of children with CHD.