‘And then there was silence’: shaping practice through the experience of parents’ emotions

Abstract

Background: Spina bifida, the most common Neural Tube Defect occurring around 28 days following conception, is often discovered in a routine ultrasound examination. Nurses offer continuous support for families who care for children with disabilities, associated with this diagnosis. Aim: To articulate and analyse parents’ recollection of the emotions they experienced when they were informed by professionals that their unborn baby may have neurological disabilities. Method: Qualitative study, using participatory visual narrative method, engaging parents caring for young children with Spina bifida. Results: The emotions parents described, surfacing at the point of diagnosis, and the crafted stories they shared, demonstrated the significance and the long-lasting impact of their experience. Disclosing sensitive information and the way it is shared has a significant role in shaping how families adjust to caring for disabled children. Conclusion: Role and care transitions of parents who choose to keep their babies, despite their impending disability, is a lengthy and complex process. Nurses should be aware of and informed by the origin story, to offer appropriate support throughout this period. Policies to promote integration with services delivered by ‘not for profit’ organisations will benefit family-focused and person-centred care.