Backgrounds TH is the only available treatment today for infants with HIE and it is considered the standard of care. Being a parent of a baby with HIE treated with TH in a neonatal intensive care is a highly traumatic event.
Aims To develop an explicative guide for parents of newborns with HIE receiving TH based on parent’s needs.
Methods To identify significant issues for parents, a descriptive qualitative study was designed. Study population were parents of newborns with HIE who received TH. Convenience sampling was used, stratified according to the severity of HIE. Two focus groups with 16 parents of newborns with moderate and mild HIE, respectively were performed. Twenty pictures were taken reflecting dimensions and categories extracted from bibliographic review. These images were used to encourage parents discourse. Interviews were recorded prior to parental consent and later transcribed. Inductive content analysis was performed using ATLAS. TI-V.6.2.
Results Three themes emerged: HIE information, cooling treatment and coping strategies for parents. The guide developed followed this structure and contents were divided into 16 meaningful questions and a glossary. The final parents guide had a didactic format with simple language, drawings, and parents verbatims. It is annexed to a Spanish clinical practice guide (CPG) on HIE.
Conclusions Qualitative results highlight the importance for parents to receive good information about HIE, cooling, and coping strategies. This guide is a tool that could improve family coping during hospitalisation of newborns with HIE and TH. Incorporating parents perspectives in the CPG increase its quality.