Motor Neurone Disease Communication Study
Research type
Research Study
Full title
Exploring communication between people living with Motor Neurone Disease and their close persons with healthcare professionals: a longitudinal qualitative study
IRAS ID
343360
Contact name
Cara Bailey
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
Aim: The aim of the study is to understand the communication experiences of patients with motor neurone disease and their close persons or family members with healthcare professionals, in order to improve communication in healthcare and enhance the quality of patient care.
Background: People living with motor neurone disease often experience difficulties communicating with healthcare professionals throughout the course of their illness. Without effective communication between patients and their close family members, it is challenging to provide high-quality care, particularly in relation to planning and decision-making. Therefore, it is important to explore their communication experiences to identify what is working well and where improvements are needed.
Design and Methods: We will interview approximately 15 patients living with motor neurone disease, along with their close family members and healthcare professionals. Each patient will take part in three interviews over the course of the study. Their close persons or family members and healthcare professionals will be interviewed once. In addition, we will observe their clinical appointments to gain further insight into their communication experiences. All interviews will be transcribed and analysed thematically. This will help us identify areas for improving communication in clinical practice. Following the interviews and observations, a co-design workshop will be held with stakeholders to discuss the findings and draft a potential framework for good communication in motor neurone disease.
Dissemination: We will develop best practice guidance for communicating with patients with motor neurone disease and their close family members. A practical toolkit will also be created for healthcare staff to support improved communication. Findings will be published in peer-reviewed journals and presented at relevant conferences and congresses.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
26/WM/0026
Date of REC Opinion
3 Mar 2026
REC opinion
Favourable Opinion