Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol

Introduction Communication challenges are among the main barriers for people with intellectual disabilities in accessing palliative care. They include inadequate skills among staff and difficulties with confirming understanding and around the presentation and assessment of symptoms. In-depth analysi...

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Main Authors: Irene Tuffrey-Wijne, Andrea Bruun
Format: Article
Language:English
Published: BMJ Publishing Group 2025-06-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/15/6/e101622.full
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author Irene Tuffrey-Wijne
Andrea Bruun
author_facet Irene Tuffrey-Wijne
Andrea Bruun
author_sort Irene Tuffrey-Wijne
collection DOAJ
description Introduction Communication challenges are among the main barriers for people with intellectual disabilities in accessing palliative care. They include inadequate skills among staff and difficulties with confirming understanding and around the presentation and assessment of symptoms. In-depth analysis of interactions between people with an intellectual disability and staff may shed light on these communicative challenges as well as facilitators. However, no studies have closely analysed the interactions between people with an intellectual disability and professionals within palliative care settings.Methods and analysis This protocol describes a pilot study assessing the feasibility and acceptability of conducting a Conversation Analysis study involving video-recording palliative care conversations between people with intellectual disabilities and professionals.Three conversations between patients with an intellectual disability, their companions and palliative care staff will be video recorded in a UK hospice. Recordings will be transcribed and analysed using Conversation Analysis. Communication phenomena of interest and worth further exploration will be identified in collaboration with key stakeholders.Ethics and dissemination The study received a favourable opinion by a UK research ethics committee in February 2025. All participants must provide informed consent to take part in the study. It will be carefully assessed that potential participants with an intellectual disability have capacity to consent to take part. Accessible study information materials for participants with an intellectual disability are available (ie, easy-read and video).Study findings will be disseminated in academic papers and conference presentations. Progress and findings will also be shared via social media and with relevant groups of people with intellectual disabilities, family carers, service providers and academics.
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spelling doaj-art-9ae28f1ec5424622a7a55b802edee2142025-08-20T03:29:18ZengBMJ Publishing GroupBMJ Open2044-60552025-06-0115610.1136/bmjopen-2025-101622Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocolIrene Tuffrey-Wijne0Andrea Bruun1Department of Public Health, Children’s, Learning Disability and Mental Health Nursing, Kingston University London, Kingston upon Thames, UKDepartment of Public Health, Children’s, Learning Disability and Mental Health Nursing, Kingston University London, Kingston upon Thames, UKIntroduction Communication challenges are among the main barriers for people with intellectual disabilities in accessing palliative care. They include inadequate skills among staff and difficulties with confirming understanding and around the presentation and assessment of symptoms. In-depth analysis of interactions between people with an intellectual disability and staff may shed light on these communicative challenges as well as facilitators. However, no studies have closely analysed the interactions between people with an intellectual disability and professionals within palliative care settings.Methods and analysis This protocol describes a pilot study assessing the feasibility and acceptability of conducting a Conversation Analysis study involving video-recording palliative care conversations between people with intellectual disabilities and professionals.Three conversations between patients with an intellectual disability, their companions and palliative care staff will be video recorded in a UK hospice. Recordings will be transcribed and analysed using Conversation Analysis. Communication phenomena of interest and worth further exploration will be identified in collaboration with key stakeholders.Ethics and dissemination The study received a favourable opinion by a UK research ethics committee in February 2025. All participants must provide informed consent to take part in the study. It will be carefully assessed that potential participants with an intellectual disability have capacity to consent to take part. Accessible study information materials for participants with an intellectual disability are available (ie, easy-read and video).Study findings will be disseminated in academic papers and conference presentations. Progress and findings will also be shared via social media and with relevant groups of people with intellectual disabilities, family carers, service providers and academics.https://bmjopen.bmj.com/content/15/6/e101622.full
spellingShingle Irene Tuffrey-Wijne
Andrea Bruun
Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
BMJ Open
title Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
title_full Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
title_fullStr Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
title_full_unstemmed Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
title_short Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study protocol
title_sort palliative care communication between patients with intellectual disabilities and hospice staff a conversation analysis pilot study protocol
url https://bmjopen.bmj.com/content/15/6/e101622.full
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