Identifying research priorities in newborn medicine: a Delphi study of parents' views

Abbey L Eeles; Alice C Burnett; Jeanie Ly Cheong; Alex Aldis; Louise Pallot; Tien Polonidis; Krista Rust; Rod W Hunt; Clare Delany; Alicia J Spittle; Centre of Research Excellence in Newborn Medicine

doi:10.1136/bmjopen-2020-044836

Identifying research priorities in newborn medicine: a Delphi study of parents' views

BMJ Open. 2021 Nov 26;11(11):e044836. doi: 10.1136/bmjopen-2020-044836.

Authors

Abbey L Eeles^{1

2

3

4}, Alice C Burnett^{5

2

6

7}, Jeanie Ly Cheong^{5

8

9}, Alex Aldis¹⁰, Louise Pallot¹⁰, Tien Polonidis¹⁰, Krista Rust¹⁰, Rod W Hunt^{5

4

6

7}, Clare Delany^{11

12}, Alicia J Spittle^{5

3

9}; Centre of Research Excellence in Newborn Medicine

Collaborators

Centre of Research Excellence in Newborn Medicine:
Renae Allen, Sarah McIntyre, Jeanie Ly Cheong, Lex W Doyle, Peter G Davis, Peter J Anderson, Alicia J Spittle, Rodney W Hunt, Deanne K Thompson, Katherine J Lee, Brett J Manley, Louise S Owen, Sharon Goldfeld, Gehan Roberts, Susan E Jacobs, Alice C Burnett, Jennifer A Dawson, Rosemarie A Boland, Kim M Dalziel, Karli Treyvaud, Marta Thio, Alex Aldis

Affiliations

¹ Clinical Sciences Theme, Murdoch Childrens Research Institute, Parkville, Victoria, Australia abbey.eeles@mcri.edu.au.
² Newborn Research, The Royal Women's Hospital, Parkville, Victoria, Australia.
³ Department of Physiotherapy, University of Melbourne, Parkville, Victoria, Australia.
⁴ Department of Paediatrics, Monash University, Clayton, Victoria, Australia.
⁵ Clinical Sciences Theme, Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
⁶ Department of Neonatal Medicine, The Royal Children's Hospital, Parkville, Victoria, Australia.
⁷ Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia.
⁸ Neonatal Services, Royal Women's Hospital, Parkville, Victoria, Australia.
⁹ Obstetrics and Gynaecology, University of Melbourne, Parkville, Victoria, Australia.
¹⁰ Consumer Advisory Group, Murdoch Childrens Research Institute Centre of Research Excellence in Newborn Medicine, Parkville, Victoria, Australia.
¹¹ Children's Bioethics Centre, The Royal Children's Hospital Melbourne, Parkville, Victoria, Australia.
¹² Department of Medical Education, University of Melbourne, Parkville, Victoria, Australia.

Abstract

Objective: Neonatal conditions can have lifelong implications for the health and well-being of children and families. Traditionally, parents and patients have not been included in shaping the agenda for research and yet they are profoundly affected by the neonatal experience and its consequences. This study aimed to identify consensus research priorities among parents/patients of newborn medicine in Australia and New Zealand.

Design: Parents/patients with experience of neonatal care in Australia and New Zealand completed an online Delphi study to identify research priorities across four epochs (neonatal admission, early childhood, childhood/adolescence and adulthood). Parents/patients first generated key challenges in each of these epochs. Through inductive thematic analysis, recurring topics were identified and research questions generated. Parents/patients rated these questions in terms of priorities and a list of questions consistently rated as high priority was identified.

Participants: 393 individuals participated, 388 parents whose children had received neonatal care and 5 adults who had received neonatal care themselves.

Results: Many research questions were identified as high-priority across the lifespan. These included how to best support parental mental health, relationships between parents and neonatal clinical staff (including involvement in care and communication), bonding and the parent-child relationship, improving neonatal medical care and addressing long-term impacts on child health and neurodevelopment.

Conclusions: Parents with experience of newborn medicine have strong, clear and recurring research priorities spanning neonatal care practices, psychological and other impacts on families, and impacts on child development. These findings should guide neonatal research efforts. In addition to generating new knowledge, improved translation of existing evidence to parents is also needed.

Keywords: developmental neurology & neurodisability; neonatal intensive & critical care; paediatric intensive & critical care; qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Child, Preschool
Communication
Delphi Technique
Humans
Infant, Newborn
Parent-Child Relations*
Parents*
Research