While parents valued counselling, many continued to report unmet informational and psychological needs. Early counselling addressing topics important to parents and provision of additional resources and support services may improve parents' adjustment to their baby's diagnosis.
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.
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