The quality of life, health needs and knowledge of children living with congenital heart disease in KwaZulu-Natal Province, South Africa

Background. An understanding of the lived experiences of children with congenital heart disease (CHD) will aid in improving the way that both parents and medical practitioners manage them holistically. Objective. To explore the perceptions of children living with CHD in KwaZulu-Natal (KZN) province of South Africa (SA), on their quality of life (QoL), health needs and knowledge of their medical conditions. Methods. A sequential explanatory mixed-methods design was employed. The study population comprised children aged between 8 and 12 years with CHD who attended cardiology clinics at the study hospital. Convenience sampling was used. Forty-three children participated in Phase 1 and 7 participants were interviewed in Phase 2. The study setting was a tertiary-level public hospital in eThekwini District, KZN, SA. The research procedure comprised a file audit of confirmed CHD in prospective participants. Caregivers completed a consent form while the children assented and completed the PedsQL 4.0 questionnaire. Interviews were conducted in Phase 2. Results. Phase 1: Both genders had higher psychosocial functioning (PSF), compared with physical functioning (PF). Children with mixed cardiac defects had lower health-related quality of life (HRQoL), compared with cyanotic or acyanotic individuals. The effect of the number of cardiac procedures on the PF domain showed a significant effect (p=0.042). Phase 2: This group had poor knowledge of their medical condition and had specific health needs. Conclusion. The findings highlight the need for improved knowledge/information on physical capabilities, medical information and support from family, caregivers and medical staff.