Developing a shared decision-making framework to assist parents and health and social care professionals when planning the place of end-of-life care for children and young people (CO-DECIDE study)
Research Project Title
The all-island CO-DECIDE Study: Co-production of a decision-making framework for planning the place of end-of-life care for children, young people and their families on the island of Ireland
Paediatric palliative care, shared decision-making tools, end-of-life care, family preferences
Medical advancements have resulted in increasing survival of children with life-limiting and life-threatening conditions. Future predictions estimate this trend will continue1
Therefore, many more children and their families will require palliative and end-of-life care. “Right care, right time, right place” is one of children’s palliative care strategic priorities on the island of Ireland. This includes actively involving parents in decision-making and planning location of care for their child. All-island policies support parental autonomy, that is the right of parents to make informed and timely decisions about end-of-life location for their child. However further policy direction is needed given the identified challenges to initiating advanced care discussions with parents of children at end-of-life. These challenges include the differences in parent and health and social care professionals care goals, and lack of shared decision-making guidance. While home is often the preferred place for end-of-life care for children with life-limiting and life-threatening conditions, the evidence around best practice remains inadequate. Most children continue to die in hospital and given the limited evidence on family preferences, further research is required2 Papadatou et al. (2020)3 recommend that policy-makers improve end-of-life care in all settings since home and hospital as place of care are desirable to different families, for different reasons, at different times.
The aim of this research is to develop an all-island decision-making framework to assist parents and health and social care professionals in shared decision-making about the place of end-of-life care for children and young people with life-limiting, life-threatening and terminal conditions.
This research project will be carried out in four key phases where the research team will:
1) Conduct an integrative review, that is a general systematic review of existing literature, to understand the international evidence-base and policy landscape. This will place the study in context, establish what is known about the topic and support subsequent phases of this research.
2) Gather all-island qualitative data that will support us in identifying current service models and supports for families in both jurisdictions, including what has worked well, what is challenging, and where additional supports are required using:
- in-depth semi-structured joint, or one-to-one, interviews with bereaved parents to understand their decision-making processes on place of end-of-life care for their child, and the experiences of end-of-life care for children in different settings (e.g. home, hospice, hospital)
- focus group interviews with health and social care professionals to understand their perspective and explore factors influencing decision-making processes for place of end-of-life care for children.
3) Conduct an online Delphi study4 to establish critical components of a decision-making framework for place of end-of-life care for children. This approach will support developing consensus statements on:
- goals of care for children at end-of-life and how these goals are negotiated between stakeholders
- changes required to existing service models to improve care for children and their families.
4) Co-design the content and delivery mode of a framework to support parents and health and social care professionals in shared decision-making when planning place of end-of-life care for children on the island of Ireland.
PPI (Personal and Public Involvement or Public and Patient Involvement)
Principles of participatory health research and co-production underpin this project where researchers, health and social care professionals, PPI contributors including bereaved parents, advocacy partners, and wider stakeholder communities will work together collaboratively through experience-based co-design. Experience-based co-design is an approach that draws on the unique experiences of key people such as staff/researchers, patients/other service users to co-design improvements in services/quality of care. PPI contributors will have the opportunity to partake in a series of face-to-face co-production events with the project expert research panel to co-design the decision-making framework components, mode and design, and any associated materials.
It is expected this research will result in the development of a novel shared decision-making framework which will improve the lives of families receiving end-of-life care for children with life-limiting and life-threatening conditions on the island of Ireland. It is envisaged that the final framework will comprise a list of trigger points and questions that can be used by parents and health and social care professionals to facilitate shared decision-making when planning place of end-of-life care for children using the evidence generated from this project. The framework will identify the service availability, implications of choices around place of care, processes, communications, activities and desired outputs to optimise care for the family. This project is ongoing. As findings become available, they will be shared on this project webpage.
Recommendations and Impact
Recommendations and evidence of impact will be communicated on this project webpage once available.
Research Project Outputs:
Research outputs, once complete, will be made available through this research project webpage.
September 2022 – August 2024
Principal Investigator: Prof Veronica Lambert, School of Nursing, Psychotherapy and Community Health, Dublin City University.
Lead Investigator QUB: Dr Patricia McNeilly, School of Nursing and Midwifery, Queen’s University Belfast
Research Team Members:
Dr Yvonne Corcoran, School of Nursing, Psychotherapy and Community Health, Dublin City University
Dr Eileen Courtney, School of Nursing, Psychotherapy and Community Health, Dublin City University
Dr Gemma Kiernan, School of Nursing, Psychotherapy and Community Health, Dublin City University
Dr Helen Kerr, School of Nursing and Midwifery, Queen’s University Belfast
Dr Tracey McConnell, School of Nursing and Midwifery, Queen’s University Belfast
Prof Joanne Reid, School of Nursing and Midwifery, Queen’s University Belfast
International Advisor: Professor Jayne Price, Professor of Children's Nursing, Kingston University and St George's, University London
All Ireland Institute of Hospice and Palliative Care
Jack and Jill Children’s Foundation
Laura Lynn Children’s Hospice
Irish Hospice Foundation
Children’s Health Ireland at Temple Street
Horizon House Children’s Hospice
Western Health and Social Services Trust – Community Paediatrics
Belfast Health and Social Services Trust – Community Services
Belfast Health and Social Services Trust – Acute Services
Royal Belfast Hospital for Sick Children
Funding & Support
Higher Education Authority North-South Research Programme, strand 1, on behalf of the Department of Further and Higher Education, Research Innovation and Science (DFHERIS)
1.Fraser LK, Gibson-Smith D, Jarvis S, et al. Estimating the current and future prevalence of life-limiting conditions in children in England. Palliative Medicine 2020; 35(9):1641-1651.
2.Gibson-Smith D, Jarvis SW , Fraser LK. Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study. Archives of Disease in Childhood 2021;106:780–785.
3.Papadatou D , Kalliani V, Karakosta E, et al. Home or hospital as the place of end-of-life care and death: A grounded theory study of parents’ decision-making. Palliative Medicine 2021;35(1):219–230
4.Barrett D, Heale R. What are Delphi studies? Evidence-Based Nursing 2020;23:68-69
For Further Information Contact:
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