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

Abstract

Background: Congenital heart disease (CHD) is one of the common diagnosed congenital disorders affecting approximately 0.8% to 1.2% live births globally. This disorder has been significantly associated with increased burden of care among caregivers. Thus, understanding the experiences and care needs of these children would be fundamental in defining improved focus on their wellbeing. However, in 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: The study adopted a cross sectional method utilizing both qualitative and quantitative approaches. The quantitative arm was conducted before the qualitative arm. The quantitative data was collected consecutively among caregivers of children attending clinic and those admitted in pediatric wards. Descriptive analysis was done to describe study population where frequencies and percentages were used for categorical data while Mean and standard deviation was used for continuous data. Logistic regression was used to investigate factors associated with caregiver mental wellbeing. Thematic analysis was done to develop themes from qualitative data. Results: the findings showed that 79.3% of 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. Common types of CHD identified included atrioventricular septal defect (AVSD) (32.7%), patent ductus arteriosus (PDA) 28.2% and atrial septal defect (ASD) (10.5%). The results also showed 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. Mental wellbeing of the caregiver’s assessment revealed that 68% had depression and 73% had mild/moderate burnout. Four main themes and seven sub-themes were identified. The themes identified include shock and denial, psycho-social wellbeing, uncertainty about future and coping strategies. Conclusion and recommendation: The findings have showed that the level of depression and burnout among caregivers of CHD patients is high which provide the need to ensure that the needs of these children are addressed. Creation of strong support groups should be integral in championing the needs of children with CHD