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.

Hypoxic-ischaemic encephalopathy based on clinical signs and symptoms and associated factors among neonates, Southern Ethiopian public hospitals: a case-control study

“…This may mean that maternal literacy affects the knowledge and use of care services before and during birth, which are important for finding and avoiding problems that may lead to HIE. Maternal literacy may also affect the knowledge and practice of healthy behaviours during pregnancy, such as nutrition, hygiene, and infection prevention 31 , 32 .…”

Hypoxic-Ischemic Encephalopathy Based on clinical biomarkers and associated risk factors in Neonates from Southern Ethiopian Public Hospitals: A Case Control Study

“…The finding suggests that maternal literacy may influence the awareness and utilization of antenatal and intra-partum care services, which are essential for detecting and preventing complications that may cause HIE [30]. Maternal literacy may also affect the knowledge and practice of healthy behaviors during pregnancy, such as nutrition, hygiene, and infection prevention [18,31].Therefore, improving maternal education and empowerment may be a key strategy to reduce the risk of HIE among newborns.…”

Estado actual de la Hipotermia Terapéutica en la Encefalopatía Hipóxico-Isquémica

“…Poder sostener a su hijo en los brazos si se encuentra estable, y la participación en su cuidado, son intervenciones decisivas para facilitar el desarrollo del vínculo y la conexión emocional recíproca 26 . Otros recursos tales como; comunicación empática con los profesionales, transferencia de información ajustada a las necesidades individualizadas de cada familia y la utilización de recursos escritos que aborden de una forma sencilla y didáctica la enfermedad, el tratamiento, la atención y el pronóstico, ayudan a situarlos en la realidad de su hijo, a mitigar sus miedos y les permiten un mejor afrontamiento de esta grave enfermedad 27 .…”