Nuria Herranz-Rubia

Neurological disorders acquired during the perinatal period are a leading cause of long-term childhood disability and constitute a significant portion of the global disease burden. Despite progress in reducing neonatal mortality, neurological morbidity remains a major challenge. Neonatal neurology, a relatively new subspecialty, aims to improve outcomes for affected infants through advances in understanding neurological injury mechanisms, developing assessment tools, and implementing preventive and therapeutic strategies. In Spain, neonatal neurology has significantly progressed over the past three decades, largely due to the contributions of Dr. Alfredo García-Alix. Recognized as a pioneer in the field, he played a crucial role in establishing neonatal neurological care services and fostering education and research. After training at Washington University in St. Louis, he introduced comprehensive neonatal neurology programs in Spain and co-founded the NeNe Foundation to advance education in the field. He also led the creation of the ‘Spanish Neonatal Brain Group’ and contributed extensively to neonatal neurology research. Dr. García-Alix was an advocate for holistic, multidisciplinary neonatal care, emphasizing early intervention, neuroprotective strategies, and parental involvement. His work significantly influenced neonatal care models in Spain and Latin America, and his legacy continues to shape the field through his teachings, research, and clinical contributions.

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.