Applying qualitative research to develop a guide for parents of newborns with hypoxic-ischemic encephalopathy
Author
Herranz-Rubia, Nuria
Violant, Veronica
Balaguer Santamaría, Albert
Noreña-Peña, Ana
Publication date
2020-05-07ISSN
1609-4069
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.
Document Type
Article
Document version
Published version
Language
English
Subject (CDU)
61 - Medical sciences
616.8 - Neurology. Neuropathology. Nervous system
Keywords
Pediatria
Infants nadons
Hipotèrmia
Neurologia pediàtrica
Infants -- Mortalitat
Pediatría
Lactantes
Hipotermia
Neurología pediátrica
Niños -- Mortalidad
Pediatrics
Babies
Hypothermia
Pediatric neurology
Children -- Mortality
Pages
12
Publisher
Sage Journals
Collection
19;
Is part of
International Journal of Qualitative Methods
Citation
Herranz-Rubia, Nuria; Violant, Veronica; Balaguer Santamaría, Albert [et al.]. Applying qualitative research to develop a guide for parents of newborns with hypoxic-ischemic encephalopathy. International Journal of Qualitative Methods, 2020, 19, p. 1-12. Disponible en: <https://journals.sagepub.com/doi/10.1177/1609406920923426>. Fecha de acceso: 12 may. 2021. DOI: 10.1177/1609406920923426
This item appears in the following Collection(s)
- Ciències de la Salut [740]
Rights
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Except where otherwise noted, this item's license is described as https://creativecommons.org/licenses/by-nc/4.0/