Exploring communication between people with intellectual disabilities and hospice staff: a conversation analysis pilot study

Background:
Communication challenges are key barriers for people with intellectual disabilities in accessing palliative care. However, no studies to date have closely analysed the communication between people with intellectual disabilities and palliative care staff.

Aim:
To assess feasibility and acceptability of conducting a Conversation Analysis study with people with intellectual disabilities and hospice staff.

Design:
A small-scale Conversation Analysis pilot study was conducted. Hospice consultations between people with intellectual disabilities and staff were recorded, transcribed, and analysed.

Setting/Participants:
Three consultations with three people with intellectual disabilities, one paid carer, three hospice nurses, and one welfare officer were video-recorded in a UK hospice between April and May 2025.

Results:
Study procedures were deemed feasible and acceptable, enabling data collection. Most hospice patients with intellectual disabilities lacked capacity to consent and/or received in-home hospice care. This hindered recruitment due to data collection being restricted to hospice premises, and the Research Ethics Committee disallowing people who lack capacity to participate. Pain assessment was identified as a phenomenon of interest. Analysis showed an assessment involving multiple questions aimed at assessing frequency, severity, and management of the person’s pain. The analysis displayed communicative challenges around brief patient answers with limited elaboration and how these were navigated by staff.

Conclusion:
The Conversation Analysis pilot study was deemed feasible and acceptable. Analyses of pain assessments provided in-depth detail of the communication challenges and strategies employed to navigate them. This type of study and evidence can inform future communication and assessment guidelines.