Parental involvement in a multidisciplinary PhD programme in neonatal brain injury

Eleanor J. Molloy; Mandy Daly; Paul Ryan; Paul Corcoran; Arun Bokde; Jean Quigley; Elizabeth Nixon; Sabina Brennan; Declan Devane; Mark Watson; Beth Corcoran; Deirdre Murray; Fiona O'Farrell; Sharon Keogh; Elaine Ni Bhraonain; Geraldine Boylan; HRB NEPTUNE project

doi:10.12688/hrbopenres.13009.1

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Open Letter

Parental involvement in a multidisciplinary PhD programme in neonatal brain injury

[version 1; peer review: 2 approved with reservations]

Eleanor J. Molloy ^1-3, Mandy Daly⁴, Paul Ryan⁴, [...] Paul Corcoran⁵, Arun Bokde⁶, Jean Quigley⁷, Elizabeth Nixon⁷, Sabina Brennan⁷, Declan Devane⁸, Mark Watson⁹, Beth Corcoran⁹, Deirdre Murray¹⁰, Fiona O'Farrell⁴, Sharon Keogh⁴, Elaine Ni Bhraonain⁴, Geraldine Boylan¹⁰, HRB NEPTUNE project

Eleanor J. Molloy ^1-3, Mandy Daly⁴, [...] Paul Ryan⁴, Paul Corcoran⁵, Arun Bokde⁶, Jean Quigley⁷, Elizabeth Nixon⁷, Sabina Brennan⁷, Declan Devane⁸, Mark Watson⁹, Beth Corcoran⁹, Deirdre Murray¹⁰, Fiona O'Farrell⁴, Sharon Keogh⁴, Elaine Ni Bhraonain⁴, Geraldine Boylan¹⁰, HRB NEPTUNE project

PUBLISHED 25 Jun 2020

Author details Author details

¹ Paediatrics, Trinity College Dublin, Dublin, Ireland
² Neonatology, Childrens Health Ireland at Crumlin, Dublin, Ireland
³ Paediatrics, Coombe Womens and Infants University Hospital, Dublin, Ireland
⁴ Irish Neonatal Health Alliance, INHA, Dublin, Ireland
⁵ National Perinatal Epidemiology Unit, University College Cork, Cork, Ireland
⁶ TCIN, TCD, Dublin, Ireland
⁷ Psychology, TCD, Dublin, Ireland
⁸ School of nursing and midwifery, NUI Galway, Galway, Ireland
⁹ Clinical research Development Ireland, CRDI, Dublin, Ireland
¹⁰ INFANT research centre, Paediatrics and Child Health, UCC, Cork, Ireland

Eleanor J. Molloy
Roles: Conceptualization, Funding Acquisition, Investigation, Methodology, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing

Mandy Daly
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Paul Ryan
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Paul Corcoran
Roles: Funding Acquisition, Writing – Review & Editing

Arun Bokde
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Jean Quigley
Roles: Conceptualization, Funding Acquisition, Writing – Review & Editing

Elizabeth Nixon
Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing

Sabina Brennan
Roles: Conceptualization, Funding Acquisition, Investigation, Writing – Review & Editing

Declan Devane
Roles: Conceptualization, Funding Acquisition, Investigation, Writing – Review & Editing

Mark Watson
Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Resources, Supervision, Writing – Review & Editing

Beth Corcoran
Roles: Methodology, Project Administration, Resources, Software, Writing – Review & Editing

Deirdre Murray
Roles: Funding Acquisition, Methodology, Writing – Review & Editing

Fiona O'Farrell
Roles: Funding Acquisition, Writing – Review & Editing

Sharon Keogh
Roles: Funding Acquisition, Writing – Review & Editing

Elaine Ni Bhraonain
Roles: Funding Acquisition, Methodology, Writing – Review & Editing

Geraldine Boylan
Roles: Conceptualization, Formal Analysis, Funding Acquisition, Methodology, Project Administration, Resources, Software, Supervision, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

This article is included in the Public and Patient Involvement collection.

Abstract

Parental and patient and public involvement (PPI) involvement is a core element of the Neonatal Brain Consortium Ireland Ireland (NBCI) since its inception. PPI representatives were critical to the development of the Consortium and the animations for parent information as well as the NEPTUNE Neonatal Encephalopathy PhD programme in which they are core members involved in PhD supervision, publications, study days and educational outreach. Key outputs have also included national clinical guidelines and parent information.

Keywords

neonatal encephalopathy, PPI, newborn

Corresponding authors: Eleanor J. Molloy, HRB NEPTUNE project

Competing interests: No competing interests were disclosed.

Grant information: Health Research Board Ireland [CDA-2018-008]
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2020 Molloy EJ et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Molloy EJ, Daly M, Ryan P et al. Parental involvement in a multidisciplinary PhD programme in neonatal brain injury [version 1; peer review: 2 approved with reservations]. HRB Open Res 2020, 3:40 (https://doi.org/10.12688/hrbopenres.13009.1) First published: 25 Jun 2020, 3:40 (https://doi.org/10.12688/hrbopenres.13009.1) Latest published: 25 Jun 2020, 3:40 (https://doi.org/10.12688/hrbopenres.13009.1)

Disclaimer

The views expressed in this article are those of the author(s). Publication in HRB Open Research does not imply endorsement by the Health Research Board of Ireland.

Rationale, aim, scope of project

Neonatal brain injury is a common cause of mortality and disability. Neonatal encephalopathy (NE) is one of the commonest causes of neonatal brain injury in full term infants. For every baby that dies from NE, another will survive with significant lifelong disability. A recent systematic review estimated that in 2010, 1.15 million babies developed neonatal encephalopathy directly related to intrapartum asphyxia with 287,000 deaths, 233,000 infants surviving with moderate/severe disability and 181,000 living with mild impairment. This represents a massive global burden of disease, as these children develop their injury at the very beginning of life. It is estimated that worldwide, NE leads to 50.2 million DALYS each year¹. A recent Health Research Board Ireland (HRB) Collaborative Doctoral Award to researchers in our Neonatal and Children’s Brain Consortium Ireland (NBCI) has shown that even infants with mild encephalopathy can have cognitive impairments at 5 years of age. There is an urgent need to study this population in greater detail and to establish the cause of brain injury so that ultimately, it can be prevented.In this project we aimed to create a unique national collaborative multidisciplinary research group including parents to optimise the investigation and management of neonatal brain injury. All babies with brain injury routinely get an magnetic resonance imaging (MRI) scan and brain monitoring with an electroencephalogram (EEG) as well as detailed developmental progress. We planned to develop unique expertise in these techniques as well as newer advanced methods. The joint supervision of the PhD students allows a new generation of expertise to be developed in Ireland and join international groups to allow integrated care and further research progress in the future. Researchers in this consortium have internationally recognized multidisciplinary expertise in neonatology, paediatrics, neurodevelopment, family-centred care, clinical trials and methodology, pharmacology, epidemiology, biostatistics, translational research and neuroimaging in neonatal brain injury. PhD students experience the holistic overview of research in this area involving the entire translational paradigm from basic science research, translational clinical research, clinical trials to epidemiology and population health while getting in depth expertise in their chosen area.

Aims

Neonatal brain injury has a multifactorial aetiology and causes significant neurological morbidity such as cerebral palsy². The only treatment available is therapeutic hypothermia (TH) for term infants with encephalopathy but morbidity and mortality rates remain high³. There is an urgent need for adjunctive therapies to improve neurodevelopmental outcomes. This project aims to combine the international expertise of a multidisciplinary group to improve the outcomes of infants with Neonatal Brain injury and strengthen collaborative links including neonatal neurointensive care and followup.

Design how and which patients and health professionals were invited to join and work with/in the project (or if patient led how were health professionals approached to mount a joint project) How did you decide who to include and how did you approach them?

The National Parent organisation the Irish Neonatal Health Alliance (INHA) were invited through a longterm contact (MD) to participate as a patient and public involvement (PPI) group on the project from grant application stage. The INHA has extensive PPI experience on both the national and international platforms and provided 5 board members for the PPI roles on the project. The PPI group were co-applicants and collaborators on the grant and wrote their relevant grant sections as well as reviewing the entire proposal. In addition, the successful funding application involves a group including psychology, neonatology, neuroscience, electrophysiology, midwifery and statisticians and experts on clinical trials methodology. This leveraged an existing close network of health researchers/practitioners and included a programme coordination role for Clinical Research Development Ireland alongside related activities such as the Wellcome-HRB Irish Clinical Academic Training Programme.

Implementation

The resulting HRB Neonatal Encephalopathy PhD Training Network (NEPTuNE) comprises five PhD projects. The PPI group were involved as follows: student interview process, active members of the Steering Committee, regular participants in Study Days and advocates for the project at other meetings. Each PPI member is connected to one of the five PhD projects as a member of the supervisory team. This involvement has had a significant impact on the direction of our research, from the initial input to the funding application, selecting motivated students, further development of projects during collaborative Study Days and strategic focus for NEPTuNE and the NBCI. PPI members have also been involved in creating two animations for parents on therapeutic hypothermia and also on the Neonatal Intensive care unit. These meetings were helpful to allow the entire research team to understand the concerns of parents. We discussed each project as well as the motivation for all participant’s involvement and planned outputs from discovery to clinical guideline implementation and family information.

Evaluation/impact

We are particularly proud of the amazing involvement of all team members and the generosity of the PPI group in attending the clinical workshops in MRI, EEG, Clinical evaluation, core outcome data sets and also in interviewing the PhD candidates. This has resulted in an open discussion on all aspects of the projects relating to families and enhances plans for dissemination. In particular we are revising some of the consent and information forms for routine MRI in the NICU. We found having a group who communicate well with us and each other is ideal and it means the same parents are not obliged to contribute constantly. This also increases the sustainability of the group.

We have held an annual national Neonatology meeting for 10 years which has a morning session hosted by the National Parent Organisation (INHA) and an afternoon scientific session targeting medical health care professionals with international guest speakers to both events. We also ensure that at every workshop and meeting a PPI representative will give a presentation and is involved in the programme development⁴.

Lessons learnt

Initially we were concerned that PPI involvement would inadvertently have a coercive element and place an extra burden on families. However by communicating by email, phone and with occasional face to face meetings after the first few introductions we have managed to involve sites all over Ireland with less impact on all collaborator time. In addition the project co-ordinator organises the teaching and communication between the group. Increased funding for meetings and opportunities to financially compensate the PPIs (all of whom work on a voluntary basis for the INHA) would enhance integration of families.

Future directions

We plan a series of papers on family reflections for the journal Pediatric Research^5,6 written by the PPI group as well as ongoing guideline development and parent information with the Royal College of Physicians of Ireland. We are also co-writing a multidisciplinary paper with core PPI involvement related to the importance of sleep and circadian rhythms in the NICU as they are also experienced in publishing⁷. We will start a PPI forum every 6 months to the executive committee to get valuable feedback and updates on appropriate involvement on the project. We have strong interdisciplinary links in Europe with the European Society for Paediatric Research (ESPR) and the European Foundation for the Care of Newborn infants (ECFNI) which is the first pan-european organisation and network to represent the interests of preterm and newborn infants and their families. We also hope to develop Family centred care in Neonatology and also advance neonatal neurointensive care in collaboration with our international partners in Johns Hopkins University, USA. This project has potential to be extended to preterm infants. Preterm infants are also at high risk of brain injury particularly cerebral palsy and neurodevelopmental delay.

Key messages

Personal contacts and previous collaborations are really helpful
Core involvement as co-applicants and access to the grant as it is written
Continued involvement in project development, programme governance and co-writing manuscripts

Data availability

Underlying data

No data is associated with this article

Acknowledgements

The NEPTuNE Group

Core Partners

1. Eleanor Molloy, Professor of Paediatrics, School of Medicine, Trinity College Dublin, Dublin, Ireland
2. Arun Bokde, Professor of Neuroimaging, Discipline of Psychiatry, School of Medicine, Trinity College Dublin, Dublin, Ireland
3. Declan Devane, Professor of Midwifery/Director of HRB-Trials Methodology Research Network, National University of Galway, Galway, Ireland
4. Deirdre Murray, Professor of Paediatrics, School of Medicine, University College Cork, Cork, Ireland
5. Miss Mandy Daly, Director of Advocacy and Policymaking, Irish Neonatal Health Alliance, Bray, Ireland
6. Elizabeth Nixon, Assistant Professor in Developmental Psychology, School of Psychology, Trinity College Dublin, Dublin, Ireland
7. Geraldine Boylan, Professor of Neonatal Physiology, School of Medicine, University College Cork, Ireland
8. Dr Mark Watson, Head of Education and Development, Clinical Research Development Ireland, Dublin, Ireland
9. Mr Paul Ryan, Board member of Irish Neonatal Health Alliance, Bray, Ireland
10. Ms Fiona O’Farrell, Paediatric Occupational Therapist
11. Ms Sharon Keogh, Director & Co-founder of Irish Neonatal Health Alliance; Founder of Monoamniotic Twins Ireland
12. Ms Elaine Ni Bhraonáin, Irish Neonatal Health Alliance, Bray, Ireland

Associate Partners

1. Nicola Robertson, Professor of Neonatology. University College London, UK
2. Frances Northington,
3. Consultant Neonatologist Co-Director, Neurosciences Intensive Care Nursery, Professor of Paediatrics, John Hopkins Hospital, Baltimore, Maryland, USA
4. Eugene Dempsey, Professor of Neonatology, School of Medicine, University College Cork, Ireland
5. Rhodri Cusack, Thomas Mitchell Professor of Cognitive Neuroscience, Trinity College Dublin, Dublin, Ireland
6. John Murphy, Professor of Neonatology & Chair of National Neonatal Therapeutic Hypothermia Committee, National Maternity Hospital, Dublin, Ireland
7. Martin White, Professor and Chair of National Neonatal Advisory Group, Royal College of Physicians Ireland, Dublin, Ireland
8. Dr Deirdre Sweetman, Consultant Neonatologist, National Maternity Hospital, Dublin, Ireland
9. Adrienne Foran, Professor and Consultant Neonatologist, the Rotunda Hospital, Dublin, Ireland
10. Dr David Sweet, Consultant Neonatologist, The Royal Belfast Hospital, Belfast, Northern Ireland
11. Ms Siobhan Horkan, Adminstrator and organisor of National Therapeutic Hypothermia Group, Ireland
12. Paul Corcoran, Professor of Obstetrics and Gynaecology, and Department of Epidemology, University College Cork, Cork, Ireland
13. Dr Veronica Dongohue, Consultant Paediatric Radiologist, National Maternity Hospital, Dublin, Ireland
14. Dr Jean Quigley, School of Psychology, Trinity College Dublin, Dublin, Ireland
15. James Meaney, Director of CAMI and Professor of Radiology, Trinity College Dublin, Dublin, Ireland
16. Dr Joanne Balfe, Consultant Paediatrician, Tallaght Hospital and Laura Lynn Hospice, Dublin, Ireland
17. Dr David Webb, Consultant Paediatrician Neurologist, Our Lady’s Children’s Hospital & Tallaght Hospital, Dublin, Ireland
18. Gunter Shumann, Professor and Chair in Biological Psychiatry; Director, Centre for Population Neuroscience and Stratified Medicine, King’s College London, London, UK

F1000 recommended

References

1. Lee AC, Kozuki N, Blencowe H, et al.: Intrapartum-related neonatal encephalopathy incidence and impairment at regional and global levels for 2010 with trends from 1990. Pediatr Res. 2013; 74(Suppl 1): 50–72. PubMed Abstract | Publisher Full Text | Free Full Text
2. Aslam S, Strickland T, Molloy EJ: Neonatal Encephalopathy: Need for Recognition of Multiple Etiologies for Optimal Management. Front Pediatr. 2019; 7: 142. PubMed Abstract | Publisher Full Text | Free Full Text
3. Sweetman DU, Kelly L, Hurley T, et al.: Troponin T correlates with MRI results in neonatal encephalopathy. Acta Paediatr. 2020. PubMed Abstract | Publisher Full Text
4. Molloy EJ, Mader S, Modi N, et al.: Parent, child and public involvement in child health research: core value not just an optional extra. Pediatr Res. 2019; 85(1): 2–3. PubMed Abstract | Publisher Full Text
5. Burton N: Family reflections on HIE. Pediatr Res. 2019; 85(1): 11–12. PubMed Abstract | Publisher Full Text
6. Pilon B: Family reflections: hope for HIE. Pediatr Res. 2019; 86(5): 672–673. PubMed Abstract | Publisher Full Text
7. Daly M: Parental perspective on neonatal outcomes. BMJ Paediatr Open. 2019; 3(1): e000404. PubMed Abstract | Publisher Full Text | Free Full Text

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Version 1

VERSION 1 PUBLISHED 25 Jun 2020