Palliative care communication with people with learning disabilities
Research type
Research Study
Full title
Palliative care communication with people with learning disabilities: a pilot study
IRAS ID
352320
Contact name
Andrea Bruun
Contact email
Sponsor organisation
Kingston University London
Duration of Study in the UK
0 years, 6 months, 2 days
Research summary
Communication has been identified as one of the main barriers to palliative care provision to people with learning disabilities. The clinical language used in palliative care can be difficult both for staff to explain and for people with a learning disability to understand. Communication challenges hinder person-centred care if the person is not fully understood by their palliative care staff and their wishes and care needs cannot be met. This adds to the long list of health inequalities that people with a learning disability face.
Research has identified general communication barriers and facilitators, but they lack detail about how and what actually happens when people talk to each other. Analysing video-recorded conversations can provide this level of detail and offer in-depth insights into the mechanisms of these conversations. However, no studies have video-recorded and analysed such interactions. There is a growing body of research studies focusing on palliative care communication, but this has not yet expanded to the learning disability field. This pilot study is taking the first step in addressing this prominent research gap.
The study will video-record three conversations people with a learning disability (and their companions) and staff in a UK hospice. The study objectives include (1) assessing recruitment, data collection tools, and the study procedures involved in video-recording these hospice interactions; and (2) conducting preliminary analyses of video-recordings, using Conversation Analysis to identify communication phenomena of interest.
The pilot study findings will inform and support a future fellowship application using Conversation Analysis aiming at developing recommendations and guidelines for communication between professionals and people with learning disabilities within palliative care settings.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
25/WM/0012
Date of REC Opinion
20 Feb 2025
REC opinion
Further Information Favourable Opinion