Caring for infants with posterior urethral valves: A qualitative study of parents’ experiences

Author:

Marokakis Sarah1,Kasparian Nadine A12,Kennedy Sean E13

Affiliation:

1. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, University of New South Wales, Sydney, New South Wales, Australia

2. Heart Centre for Children, Sydney Children’s Hospitals Network, Westmead and Randwick, Sydney, New South Wales, Australia

3. Department of Nephrology, Sydney Children’s Hospital, Randwick, New South Wales, Australia

Abstract

This study aimed to explore the perspectives and experiences of parents caring for an infant with posterior urethral valves (PUVs). Eight parents participated in a semi-structured, individual telephone interview, with qualitative data collected and analysed thematically using NVivo11 software. Two main themes emerged as interconnecting aspects of parents’ experiences: (1) trying to face the challenges and (2) learning to cope. Parents felt challenged by the need to attend to their child’s medical care, while developing a bond with their baby, trying to maintain positivity for their child’s future and managing the impact of the condition on their family. Nevertheless, parents developed strategies to cope with these challenges, such as seeking support, normalizing the experience and focusing on the positives. This preliminary understanding of parents’ experiences provides direction for improving care pathways for infants with PUV and their parents as well as guides further research in this previously unexplored area.

Publisher

SAGE Publications

Subject

Pediatrics,Pediatrics, Perinatology and Child Health

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