The untold story: The life of parents with children having congenital anomalies in Ethiopia, a hermeneutic phenomenological study.

BACKGROUND

Congenital anomalies are structural abnormalities that occur during intrauterine life and are prenatally or postnatally identifiable. They are major contributors to neonatal and under-5 mortality. Childbirth is a pleasant phase of life for parents who birth healthy newborns. However, this would mean something different for parents who give birth to children with congenital anomalies. Even though these anomalies can be treated surgically, parents experience physical, psychological, and economic difficulties. Most of the literature on parental experiences originates from high-income countries, making their context less applicable to low and middle-income countries (LMICs) such as Ethiopia.

PURPOSE: This study aimed to explore the firsthand experiences of Ethiopian parents raising children with congenital anomalies.

METHODS

A phenomenological study was conducted to explore the lived experiences of parents of children with congenital anomalies at two tertiary hospitals in South Ethiopia. Eighteen parents were purposively selected for the in-depth interviews. The interviews were audio recorded, transcribed, and translated. The rigor of the study was ensured by establishing its credibility, transferability, dependability, and conformability. Thematic analysis was performed using Open Code v4.03.

RESULTS

Five overarching themes emerged. The themes include 'prior awareness, perception and discovery', 'parental emotional reaction', 'burden', 'support system', and 'impact of the anomaly'.

CONCLUSION

Parents of children with congenital anomalies face challenges in obtaining healthcare services and experience financial and hygiene-related burdens because of their children's condition. They experience emotional distress and social difficulties, while relying on their limited community and familial support.