A qualitative study on the experiences of caregivers of children undergoing surgery for congenital heart diseases

Abstract

Objective

This study explores the experiences of caregivers of pediatric cardiac surgery patients, aiming to deepen understanding of their role and improve the caregiving process.

Methods

A qualitative, phenomenological approach was employed using individual, semi-structured interviews with a heterogeneous sample of caregivers (both mothers and fathers) of children who had undergone surgery for congenital heart disease. Interviews were conducted face-to-face from June 2023 to May 2024, following Creswell's interview techniques. Data collection and analysis were performed simultaneously using MAXQDA software.

Results

Participants included caregivers of children aged 2 months to 17 years, with caregivers themselves aged 25 to 50 years. Most children had undergone surgery for congenital heart valve disease, with surgeries ranging from one to three. Three main themes and nine sub-themes were identified: (1) “Comprehensive health journey” described caregivers' experiences from diagnosis through treatment and their interactions with healthcare professionals; (2) “Challenges” encompassed social isolation, financial strain, work-life balance issues, and the impact on the education process; and (3) “Uncertainty” captured caregivers' anxiety about the future and concerns regarding home care.

Conclusion

The findings offer valuable insights into the challenges and needs of caregivers in the pediatric cardiac surgery context, highlighting areas where support services and interventions could be beneficial.

Implications to practice

The study emphasizes the importance of healthcare professionals providing caregivers with clear information and empathetic support, which can enhance both caregiver well-being and patient outcomes.