Advance care planning for babies, children and young people. Listening to families and professionals.

Principal Investigator: 

• Dr Karen L Shaw

Research Fellow:

• Jenna Spry

Co-investigators:

University of Birmingham

• Dr Carole Cummins
• Professor Andrew Ewer
• Professor Sheila Greenfield
• Professor Mark Kilby
• Dr Sue Neilson
• Dr Magdalena Skrybant
•  Dr Paul Thompson

External

• Dr Serena Cottrell (Portsmouth Hospitals NHS Trust/University of Southampton)
• Nicki Fitzmaurice (Birmingham Women’s and Children’s NHS Foundation Trust)
• Dr Gemma Heath (Aston University)
• Janette Vyse (Birmingham Women’s and Children’s NHS Foundation Trust)

Our research brings together a diverse range of families, professionals, academics and charities to advance clinical practice, education and policy.

Our studies mainly focus on advance care planning for babies, children and young people who have life-threatening or life-limiting conditions. These are formal plans that set out agreed actions for a range of scenarios (e.g. deteriorating health, emergencies, end of life) and are recommended in national policy as a key mechanism to drive up standards in care. Our findings are producing new evidence about what families want from advance care plans and the factors that influence implementation and outcomes.

A key feature of our research is the use of co-production models of involvement, where families and other stakeholders advise on all aspects of the studies and share decision-making. We also use qualitative and mixed methods that facilitate the user voice to be heard (e.g. interviews, focus groups, national surveys), including art and other creative media to promote involvement and understanding.

We also have a strong commitment to knowledge transfer and work closely with key policy makers, professional networks and parent groups to rapidly translate our findings into improved policy, education and practice.

 

Perinatal Advance Care Planning. Listening to parents and professionals.

(Live project)  

Birmingham Women’s and Children’s Hospital Research Foundation. KL Shaw KL (PI), Spry J, Ewer A, Kilby M, Cummins C. How should we implement advance care planning in perinatal settings?  A mixed methods study using normalisation process theory. Birmingham Women’s and Children’s Hospital Research Foundation. Feb 2020 – Feb 2021. Funding refBWCHRF579.

 

Advance Care Planning. Listening to families and professionals.

(Recently completed – dissemination ongoing)

Marie Curie Grants Scheme. Shaw KL, Cummins C, Greenfield S, Heath G, Shanks A, Neilson S. A multi-perspective qualitative study to understand the experience and impact of the Child and Young Person’s Advance Care Plan (CYPACP). Oct 2017 – Feb 2020. Funding Ref: MCRGS-07-16-11.

Here is a list of publications and outputs from our research – we are adding more all the time!

Final Report for families. This 3-page report summarises the key findings from the project. It also describes how we are using them to improve care: 

• Final report for families docx, 1007 Kb

Final Report. This 31-page report outlines the study aims, methods, results and conclusions. It also includes an overview of the final recommendations and describes ongoing work to turn the study findings into action:

• Final report (PDF, 1.58Mb).

This is the accessible version: 

• Final report (docx, 2.27Mb)

Short Report – policy recommendations: This 4-page report highlights key findings from the study and implications for policy, including clinical guidance, education, funding and care provision: 

• Evaluating advance care plans - short report PDF, 907 Kb

Recommendations for the Child and Young Person’s Advance Care Plan: This 22-page document provides a detailed list of recommendations for those developing or using the Child and Young Person’s Advance Care Plan. Recommendations include how to use the document with families, processes to manage the documentation and future development.

• Evaluating advance care plans - recommendations PDF, 4.15Mb
  

Our research resulted in several recommendations to improve advance care planning for children and their families. Here is how we are acting on them:

An educational framework for advance care planning

We identified a number of unmet educational needs. As such, we recommended the development of a competencies and training framework to clarify what knowledge and skills are needed by different professionals involved in advance care planning. We are taking this forward by working with the UK and Ireland Children’s Palliative Care Education Standard Framework and Audit Action Group - who have produced a set of resources to help standardise children’s palliative care education. We are working with this group, and other experts, to develop guidance that is specific to advance care planning – that will fit within this education framework.

Improving the education of professionals

As well as hosting a study day for professionals, our research has also been used to inform education and teaching at the University of Birmingham. This includes the following postgraduate course run by the School of Nursing and Midwifery:

Principles of palliative care for children and young people. Download the details of this interprofessional module for practitioners.

• Together for short lives

• Antenatal Results and Choices – ARC

• SANDS

• Child Bereavement UK

• Cruse Bereavement Care

• Childline

Email:  Dr Karen Shaw