Project Title

Acceptability and usefulness of ‘My Healthcare Passport’ to young people with life-limiting conditions

Research Focus:

Chronic Illness and Palliative care

Funder & Dates

Marie Curie Research

January 2017 – December 2018

Principal Investigator or Primary Supervisor (if PhD project)

PI: Dr Peter O’Halloran

Co-Investigators or additional supervisors

CIs: 1. Dr Dorry McLaughlin; 2. Dr Bronagh Byrne; 3. Miss Michaela Hollywood 4. Dr Jayne Price; 5. Dr Aine Abbott; 6. Professor Max Watson

Research Fellow(s) or PhD Student

Dr Janet Diffin

Name & Institution of Collaborators

1-2. Queen’s University Belfast; 3. Trailblazers, Muscular Dystrophy UK; 4. Kingston University, London; 5. Royal College of GPs NI; 6. University of Ulster

Name of External Partner Organisations

Description of Project:

Aim; Methods; Expected Outcomes

Background: In the UK nearly 50,000 children and young people have a life-threatening or life-limiting condition. Most professionals agree that young people and their families should be fully involved in decision-making. However, young people and families report having to repeat their story to different professionals. They say it is difficult to do advance care planning (ACP) for how they want to be looked after at the end-of-life. ACP is linked with feeling happier, treatment in line with the young person’s wishes, and being able to die at home. One proposal for dealing with communication problems is for all concerned to refer to patient-held records (PHRs).  ‘My Healthcare Passport’ is a new PHR for people facing life-limiting illness. This electronic or paper document is kept by the patient and contains information on family and healthcare contacts, medical condition, medications, and level of independence, with a section on care preferences if the person’s condition worsens, or they are at the end of life.  We will research this PHR to see if young people and their families like it and find it useful.

Methods: We will invite 25 young people aged 16-24 years living in Northern Ireland with life-limiting conditions, their families, and service providers to take part. Young people can use the PHR for up to nine months. We will interview the young people, family members and professionals about their experiences using the PHR. We will also ask young people to keep a diary of their experiences, to give short telephone interviews at three and six months, and – if they wish – let us see how they have used their PHR.

Photograph of PI, Project Team, Partner Logos; any other images associated with the project.

Dr. Peter O’Halloran

Janet Diffen

Links/URLs to external pages, e.g., study webpage, reports, publications etc.

https://thepassportstudy.wordpress.com/

Any other relevant information