Cargando…

Core outcomes in neonatal encephalopathy: a qualitative study with parents

OBJECTIVE: To identify the outcomes considered important to parents or caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in high-income and low- to middle-income countries (LMiCs), as part of the outcome-identification process in develop...

Descripción completa

Detalles Bibliográficos
Autores principales: Quirke, Fiona, Ariff, Shabina, Battin, Malcolm, Bernard, Caitlin, Bloomfield, Frank H, Daly, Mandy, Devane, Declan, Haas, David M, Healy, Patricia, Hurley, Tim, Kibet, Vincent, Kirkham, Jamie J, Koskei, Sarah, Meher, Shireen, Molloy, Eleanor, Niaz, Maira, Ní Bhraonáin, Elaine, Okaronon, Christabell Omukagah, Tabassum, Farhana, Walker, Karen, Biesty, Linda
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9328095/
https://www.ncbi.nlm.nih.gov/pubmed/36053648
http://dx.doi.org/10.1136/bmjpo-2022-001550
_version_ 1784757637779292160
author Quirke, Fiona
Ariff, Shabina
Battin, Malcolm
Bernard, Caitlin
Bloomfield, Frank H
Daly, Mandy
Devane, Declan
Haas, David M
Healy, Patricia
Hurley, Tim
Kibet, Vincent
Kirkham, Jamie J
Koskei, Sarah
Meher, Shireen
Molloy, Eleanor
Niaz, Maira
Ní Bhraonáin, Elaine
Okaronon, Christabell Omukagah
Tabassum, Farhana
Walker, Karen
Biesty, Linda
author_facet Quirke, Fiona
Ariff, Shabina
Battin, Malcolm
Bernard, Caitlin
Bloomfield, Frank H
Daly, Mandy
Devane, Declan
Haas, David M
Healy, Patricia
Hurley, Tim
Kibet, Vincent
Kirkham, Jamie J
Koskei, Sarah
Meher, Shireen
Molloy, Eleanor
Niaz, Maira
Ní Bhraonáin, Elaine
Okaronon, Christabell Omukagah
Tabassum, Farhana
Walker, Karen
Biesty, Linda
author_sort Quirke, Fiona
collection PubMed
description OBJECTIVE: To identify the outcomes considered important to parents or caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in high-income and low- to middle-income countries (LMiCs), as part of the outcome-identification process in developing a core outcome set (COS) for the treatment of neonatal encephalopathy. DESIGN: A qualitative study involving 25 semistructured interviews with parents or other family members (caregivers) of infants who were diagnosed with, and treated for, neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia. SETTING: Interviews were conducted in high-income countries (HiCs) (n=11) by Zoom video conferencing software and in LMiCs (n=14) by phone or face to face. FINDINGS: Parents identified 54 outcomes overall, which mapped to 16 outcome domains. The domains identified were neurological outcomes, respiratory outcomes, gastrointestinal outcomes, cardiovascular outcomes, motor development, cognitive development, development (psychosocial), development (special senses), cognitive development, development (speech and social), other organ outcomes, survival/living outcomes, long-term disability, hospitalisation, parent-reported outcomes and adverse events. CONCLUSIONS: This study provides insight into the outcomes that parents of infants diagnosed with neonatal encephalopathy have identified as the most important, to be considered in the process of developing a COS for the treatment of neonatal encephalopathy. We also provide description of the processes employed to ensure the inclusion of participants from LMiCs as well as HiCs.
format Online
Article
Text
id pubmed-9328095
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher BMJ Publishing Group
record_format MEDLINE/PubMed
spelling pubmed-93280952022-08-16 Core outcomes in neonatal encephalopathy: a qualitative study with parents Quirke, Fiona Ariff, Shabina Battin, Malcolm Bernard, Caitlin Bloomfield, Frank H Daly, Mandy Devane, Declan Haas, David M Healy, Patricia Hurley, Tim Kibet, Vincent Kirkham, Jamie J Koskei, Sarah Meher, Shireen Molloy, Eleanor Niaz, Maira Ní Bhraonáin, Elaine Okaronon, Christabell Omukagah Tabassum, Farhana Walker, Karen Biesty, Linda BMJ Paediatr Open Neonatology OBJECTIVE: To identify the outcomes considered important to parents or caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in high-income and low- to middle-income countries (LMiCs), as part of the outcome-identification process in developing a core outcome set (COS) for the treatment of neonatal encephalopathy. DESIGN: A qualitative study involving 25 semistructured interviews with parents or other family members (caregivers) of infants who were diagnosed with, and treated for, neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia. SETTING: Interviews were conducted in high-income countries (HiCs) (n=11) by Zoom video conferencing software and in LMiCs (n=14) by phone or face to face. FINDINGS: Parents identified 54 outcomes overall, which mapped to 16 outcome domains. The domains identified were neurological outcomes, respiratory outcomes, gastrointestinal outcomes, cardiovascular outcomes, motor development, cognitive development, development (psychosocial), development (special senses), cognitive development, development (speech and social), other organ outcomes, survival/living outcomes, long-term disability, hospitalisation, parent-reported outcomes and adverse events. CONCLUSIONS: This study provides insight into the outcomes that parents of infants diagnosed with neonatal encephalopathy have identified as the most important, to be considered in the process of developing a COS for the treatment of neonatal encephalopathy. We also provide description of the processes employed to ensure the inclusion of participants from LMiCs as well as HiCs. BMJ Publishing Group 2022-07-25 /pmc/articles/PMC9328095/ /pubmed/36053648 http://dx.doi.org/10.1136/bmjpo-2022-001550 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Neonatology
Quirke, Fiona
Ariff, Shabina
Battin, Malcolm
Bernard, Caitlin
Bloomfield, Frank H
Daly, Mandy
Devane, Declan
Haas, David M
Healy, Patricia
Hurley, Tim
Kibet, Vincent
Kirkham, Jamie J
Koskei, Sarah
Meher, Shireen
Molloy, Eleanor
Niaz, Maira
Ní Bhraonáin, Elaine
Okaronon, Christabell Omukagah
Tabassum, Farhana
Walker, Karen
Biesty, Linda
Core outcomes in neonatal encephalopathy: a qualitative study with parents
title Core outcomes in neonatal encephalopathy: a qualitative study with parents
title_full Core outcomes in neonatal encephalopathy: a qualitative study with parents
title_fullStr Core outcomes in neonatal encephalopathy: a qualitative study with parents
title_full_unstemmed Core outcomes in neonatal encephalopathy: a qualitative study with parents
title_short Core outcomes in neonatal encephalopathy: a qualitative study with parents
title_sort core outcomes in neonatal encephalopathy: a qualitative study with parents
topic Neonatology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9328095/
https://www.ncbi.nlm.nih.gov/pubmed/36053648
http://dx.doi.org/10.1136/bmjpo-2022-001550
work_keys_str_mv AT quirkefiona coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT ariffshabina coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT battinmalcolm coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT bernardcaitlin coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT bloomfieldfrankh coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT dalymandy coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT devanedeclan coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT haasdavidm coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT healypatricia coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT hurleytim coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT kibetvincent coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT kirkhamjamiej coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT koskeisarah coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT mehershireen coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT molloyeleanor coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT niazmaira coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT nibhraonainelaine coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT okarononchristabellomukagah coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT tabassumfarhana coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT walkerkaren coreoutcomesinneonatalencephalopathyaqualitativestudywithparents
AT biestylinda coreoutcomesinneonatalencephalopathyaqualitativestudywithparents