Primary caregivers’ experiences of caring for their child post cardiac intervention: An exploratory study

Abstract

Children in developing countries are now receiving both surgical and catheter-based interventions for the repair of congenital heart defects. Despite the technically advanced treatment options and improved survival rates of children with congenital heart defects, little is known about the experiences and challenges of primary caregivers whilst taking care of their child after a cardiac intervention in South Africa. This exploratory, descriptive study used a qualitative research approach to describe some of the key experiences of eight primary caregivers as they took care of their child in their home environment following a cardiac interventional procedure. The interventional procedures being referred to are both interventional cardiac catheterisation and cardiac surgery procedures. A purposive sample of eight primary caregivers from the tertiary level hospital in Kwa-Zulu Natal, South Africa was selected. Data was collected telephonically through semistructured interviews. Thematic analysis was used to analyse the data and basic statistical analysis of sociodemographic data of participants was conducted. Data was presented both quantitatively and qualitatively in the form of tables, concepts maps, word clouds, participants quotes. In terms of ethics, interviewees participated voluntarily and informed consent was sought from each interviewee and they were informed of their rights to not participate or to stop participating at any time, without any negative consequences to them, their child and the services they would receive from the hospital in the future. Verbal informed consent was sought prior to telephonic interviews and all participant information was kept confidential. The study revealed a number of challenges which primary caregivers described as encumbering the quality of the care they could provide for their child at home. These included poor living conditions, multiple roles as the person running the home, lacking adequate finances to meet the basic needs of the child (like food and clothes) as well as their lack of access to clean water, electricity and proper sanitation.