The Healthcare Passport Study
Research type
Research Study
Full title
Acceptability and usefulness of ‘My Healthcare Passport’ to young people with life-limiting conditions
IRAS ID
208518
Contact name
Peter D O'Halloran
Contact email
Sponsor organisation
Queen's University Belfast
Duration of Study in the UK
1 years, 6 months, 31 days
Research summary
In the UK nearly 50,000 children and young people have a life-threatening or life-limiting condition, such as cancer or muscular dystrophy. Professionals agree that young people and their families should be fully involved in decision-making. However, fragmented health and social services make communication challenging. 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 also 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 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. A paper and electronic version of the PHR will be made available.
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 either the paper or electronic version of the PHR or a combination of both 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.
REC name
HSC REC B
REC reference
17/NI/0107
Date of REC Opinion
23 Jun 2017
REC opinion
Further Information Favourable Opinion