A Phenomenological Study to Assess the Lived Experiences of Parents of Children with Congenital Disorders Admitted in Paediatric Health Care Settings of Selected Paediatric Hospitals, Vadodara
1Rajesh P. Joseph*, E.V. Nirmal Raj, Dayanand Belagavi, Carol Christian, Bhanu Baria, Joshi Ilesh and Bhoi Ragini
Background: Congenital anomalies have been understood as a root cause for neonatal morbidity and mortality in recent days. Living with congenital anomaly is a critical issue and that might influence diverse aspects of parent’s life. It is a burden for the parents, to deal with hospitalization and activities of daily living of the children. Aim: The investigators aimed to illustrate the lived experiences of parents having children with congenital anomalies. Material and Methods: A qualitative study was carried out using phenomenological hermeneutical method to transcribe the lived experiences of the parents having children diagnosed with any form of congenital anomaly. Twenty five mothers were identified from three pediatric hospitals by convenience sampling technique and interviewed by using open ended questionnaire. Each interview was audio recorded and lasted for 30 to 45 minutes. The narrated experiences were interpreted into a meaningful statement for exploration. The analysis of collected information lead to development of themes. Results: The present study helped us to highlight the emotions, feelings and challenges of parents dealing with children during their hospitalization. Socio-demographic characteristics shown that majority (84%) of the parents were mothers. The interview verbatim was transcribed into seven themes for deeper understanding. (1) Emotional experiences (2) Experiences related to Financial issues (3) Experiences concerned to Social perspectives (4) Child centered experiences (5) Experiences on knowledge and awareness (6) Child self care experiences (7) Experiences towards exposure to unfamiliar environment. Conclusion: The study insists the importance of routine assessments to be conducted by the health care providers to understand the strange experiences of parents during their child’s hospitalization. The support they receive through health care and therapeutic interpersonal relationship would promote the physical and psychological well being of parents.
Congenital Anomalies, Lived Experiences, Parents, Hospitalization.