Applying qualitative research to develop a guide for parents of newborns with hypoxic-ischemic encephalopathy

Abstract

Moderate-to-severe hypoxic-ischemic encephalopathy (HIE) is a significant cause of neonatal mortality and permanent disability in surviving newborns. Therapeutic hypothermia (TH) is the only effective intervention to reduce these outcomes. Being a parent of these babies is a traumatic and strenuous event. To address these difficulties, parents need information and support. The aim of this article is to describe a qualitative methodological process followed to develop a guide for parents of a newborn with HIE receiving TH as an addendum to clinical practice guidelines. The guide based on the experience of parents of newborns with HIE is presented as 16 meaningful questions and a glossary. It provides information to parents about HIE, treatment and care, future outcomes, and coping strategies. The final version, in Spanish and English, has a didactic format with simple wording, parents’ verbatim queries, and illustrations made expressly for the guide. Furthermore, we think showing the methodological process we followed to develop the guide, detailing the difficulties that arose in doing so, and making the reflexivity of the researchers explicit may provide support for other teams undertaking similar projects. Likewise, this article illustrates in a practical way how the perspective of family can be incorporated into clinical practice guidelines.