The all-island CO-DECIDE Study
Research type
Research Study
Full 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.
IRAS ID
324268
Contact name
Patricia McNeilly
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
1 years, 4 months, 30 days
Research summary
Summary of Research:
The ‘home’ is often the preferred location of end-of-life care and death for children living with a life-limiting, life-threatening or terminal condition. Yet, most children with a life-limiting condition continue to die in hospital. We need further evidence and guidance about planning end-of-life care for children including the families preferred location of care (e.g., home, hospital, hospice). We are not aware of any studies that have specifically developed decision-making tools to help parents and health and social care professionals plan the place of end-of-life care for children. Hence, together with parents and healthcare providers we aim to produce a decision-making framework to assist parents and healthcare providers to plan the place of end-of-life care for children with life-limiting, life-threatening and terminal conditions. We will achieve this by interviewing parents and healthcare providers in the North and South of Ireland to understand their experiences of end-of-life care for children. We will share learning by communicating our findings with all relevant people, and anticipate that this will help improve the quality of life of families receiving end-of-life care for children on the island. We hope that the decision-making framework will empower parents and assist healthcare providers to communicate and negotiate shared decision-making for the place of end-of-life care for children. This will result in placing the child and family at the centre of care ensuring that they receive access to the right care, in the right place, and at the right time, in line with best palliative and end-of-life care practice.Summary of Findings:
The literature review, early in the study, identified 4 important themes or issues considered by parents when making the decision about where their child would be cared for: (1) Consideration of the child and their unique needs (2) the availability and suitability of end-of-life care services wihtin the locality (3) Parents’ perceived capacity to meet the needs of their dying child and the degree of control they felt over the situation and (4) Family and sibling well-being.
Parents interviewed as part of the current study spoke of the pros and cons of caring for their child in hospital, hospice and home and the impact of this on their decision about where the child was cared for at the end of life. The needs of their child was first and foremost and this was threaded through the data. Health and social care professionals spoke in the focus groups of the importance of trusting relationships and good communication, the challenges of meeting family expectations, the availability of trained staff and the need for optimal collaboration between professionals, agencies and services.
The data gathered in the study was used to generate statements as part of a Delphi survey to establish the key elements that needed to go into a decision making framework to help families and professionals to make the best decision as regards where the child would be cared for. This was assisted by a delphi panel, comprising experts within the field and bereaved parents. Two workshops were then held with key stakeholders (North and South of Ireland) to discuss and reach a consensus regarding the final framework for use in clinical practice.The final framework has been developed and adapted following the feedback from key stakeholders.
It is anticipated that funding will be secured by the DCU team in the future to explore implementation of the framework in practice.REC name
Wales REC 6
REC reference
23/WA/0086
Date of REC Opinion
7 Jun 2023
REC opinion
Further Information Favourable Opinion