The lived experience of parents on disclosure that their baby has a disability : getting it right from the start

Abstract

This study examines the experience of parents who lived through the disclosure that their baby has a disability. The nature of this qualitative study calls for an interpretative phenomenological approach. One-time in-depth interviews were carried out with five participants - two couples (postnatal disclosure) and one mother (prenatal disclosure). Analyses of the emerging themes brought to light how the parents gave meaning to their significant life changing event by reconstructing hope to emerge as a family like any other, facing their daily ups and downs, while never denying the added challenges that raising a child with an impairment brings about. Other themes that emerged relate to the participants’ experience of the disclosure process, both pre and post-natal, as well as the emotional and psychological effects they passed through. Among the salient findings is the coping and adjustment process that follow disclosure, as the parents embark on a different journey than they had anticipated - a journey that compels them to question their understanding of disability and perception of parenthood, as well as becoming advocates for their children in the hope that society truly becomes inclusive for everyone. The participants come to realise that despite the negative way the unexpected news was divulged to them, their child was the one they had always dreamed of having. By narrating a non-linear story of the disclosure of their child’s impairment, the participants hope to pass on the message to the professionals involved in breaking unexpected news that getting it right from the start goes a long way to pave the way for coping and adjusting later on and for the new parents to be able to celebrate the life of their child, just like any other parents might. Recommendations for future research and suggestions for policy and practice changes are also presented.