Evaluating Advance Care Plans. Listening to families and professionals

  • Research type

    Research Study

  • Full title

    A multi-perspective qualitative study to understand the experience and impact of the Child and Young Person’s Advance Care Plan (CYPACP).

  • IRAS ID

    233027

  • Contact name

    Karen L Shaw

  • Contact email

    k.l.shaw@bham.ac.uk

  • Sponsor organisation

    University of Birmingham

  • Duration of Study in the UK

    1 years, 4 months, 8 days

  • Research summary

    To be told your child may not reach adulthood is something you never want to hear, but is a reality for many families. Unfortunately, children with life-threatening conditions and their families do not always have chance to discuss and agree their future care needs. This can result in care that does not reflect their wishes.

    The Child and Young Person's Advance Care Plan (CYPACP) is a document to help plan ahead and record their wishes. It is a ‘plan for life’ that aims to help children/young people to live as well as possible, for as long as possible and to choose the care they want, in the places they want it.

    Aim: to understand how families, professionals and organisations work together to discuss, complete and use the CYPACP to benefit children/young people.

    Method: In-depth interviews with:
    • approximately 15 families who have experience of the CYPACP
    • health professionals who helped them complete their plans
    • others named in their plans (e.g. GPs) who may need to follow the plan.

    Secure online survey or group discussions for:
    • Other eligible families and professionals to share their views and experiences of the CYPACP.

    Data analysis will identify the main ‘themes’ and the ‘language’ used by people. This will be combined to understand how families and professionals work together to talk about advance care planning, make decisions and use the information.
    Findings will identify what leads to better outcomes for children, young people and families and will be used to develop a strategy for improvement.

    We will work with the CYPACP Working Group (a group of hospitals, children’s hospices and charities who are responsible for developing the CYPACP) to ensure the findings improve care. This might involve changes to their policy, documents and training. We will also share the results with other key organisations in palliative care.

  • REC name

    East Midlands - Derby Research Ethics Committee

  • REC reference

    18/EM/0152

  • Date of REC Opinion

    23 Jul 2018

  • REC opinion

    Further Information Favourable Opinion