Young Carers and Palliative Care
Research type
Research Study
Full title
Young people living with and caring for a parent with palliative care needs
IRAS ID
145098
Contact name
Kathryn Almack
Contact email
Research summary
The experience of young people who are living with a parent with palliative care needs has received limited research attention to date; therefore, little is known about the impact on everyday life for young people when a parent is seriously ill and is not going to get better, or how families manage changes in the way people care for each other as parental illness progresses.
The purpose of this study is to explore the experience of young people who are living with, and caring for, a parent with palliative care needs from the perspective of young people themselves.
The study aims to recruit 10-12 young people aged 13-18 with the support of services who are already in contact with them or a family member; for example, young carers’ services or specialist palliative care teams. Each young person will be invited to take part in an individual interview with a researcher. The researcher might ask;
• What is important to you about your family?
• Who do you look after, and who looks after you?
• What has changed in your family life since someone became seriously ill?
• What is important for you in the future, and what might help you with this?
The young person will be invited to suggest up to two people who are important to them who will also be invited to an interview; for example, a parent, a sibling, or a grandparent. This is so that young people’s experiences can be explored in the context of their family. All interviews will be voice recorded, transcribed and analysed using a framework known as ‘The Listening Guide’.
The study will add to what we know about young carers, and about family care when a parent has palliative care needs, and may help to inform future support services.REC name
East Midlands - Derby Research Ethics Committee
REC reference
14/EM/0016
Date of REC Opinion
22 Jan 2014
REC opinion
Further Information Favourable Opinion