Difficult Conversations Booklet: a resource for health professionals
Research type
Research Study
Full title
Difficult Conversations Booklet: a resource for health professionals to help them talk to people with advanced kidney disease about palliative care issues
IRAS ID
277023
Contact name
Anna Winterbottom
Contact email
Sponsor organisation
Leeds Teaching Hospitals Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Kidney guidelines suggest staff should talk to people with advanced kidney disease about the type of care they would like at the end of their life. Kidney staff can find it difficult to talk with their patients about end-of-life. Good quality information based on patients experiences of choosing not to start dialysis, stopping dialysis and end of life ‘palliative’ care can help people with kidney disease and staff, make decisions about the end-of-life.
The research study will develop a booklet focussing on palliative care issues called ‘Difficult Conversations: talking with people with advanced kidney disease’.
The project has two phases:
Phase 1: Interviews with kidney patients’, (former) family/carer will explore important palliative care issues that impact on people’s experience, decision making, treatment and care. ~45 patients at Leeds and Manchester renal units will be interviewed. We will ask for NHS permission to conduct the research. We will ensure people agree in writing to take part. Interviews will look at how people make sense of their illness at the end-of-life, topics they would like to discuss with their kidney doctor/nurse and what it means to not start/stop dialysis treatment. Interviews will be recorded and analysed to identify common themes spoken about by participants.Phase 2: The booklet will be developed in hard copy and electronically, using themes and quotes from the interviews and use guidelines on developing health information. The booklet will help kidney staff to better understand patients’ needs from patients, families and carer perspectives, and start palliative care conversations at an appropriate time. The booklet will also be developed into an online learning package.
A group of expert researchers and patients interested in palliative care will provide support throughout the project. Hospice UK and The Renal Association will support the booklet development and will help distribute it.
REC name
North of Scotland Research Ethics Committee 2
REC reference
20/NS/0073
Date of REC Opinion
23 Jul 2020
REC opinion
Further Information Favourable Opinion