Rev. Soc. Bras. Enferm. Ped.2025;25:eSOBEP20253.
Experiences and well-being strategies of caregivers of children with congenital heart disease
DOI: 10.31508/1676-3793202503i
Abstract
Objective
To understand caregivers’ perceptions and experiences regarding congenital heart disease and the well-being strategies adopted during the children’s illness process.
Methods
A qualitative, descriptive, and exploratory study was conducted with 24 caregivers of children with congenital heart disease at a public hospital in Santa Catarina, Brazil. Data were collected through a semi-structured questionnaire, including sociodemographic and clinical information, and analyzed using Minayo’s Thematic Analysis.
Results
Four topics emerged: (1) Initial impact with the diagnosis: difficulties and overcoming them; (2) Challenges in self-care; (3) Breaking with preconceived notions and changes in plans and goals; (4) Well-being strategies.
Conclusion
Caregivers experience intense emotional impact and overload, but seek balance through love for their child, family support, spirituality, and self-care. Clear guidance, religiosity, leisure activities, and self-care were identified as strategies that support caregivers’ well-being.
Keywords: Caregivers; Congenital heart disease; Pediatric nursing; Pediatrics