Exploring communication between people living with Motor Neurone Disease and their close persons with healthcare professionals: a longitudinal qualitative study
A person with Motor Neurone Disease may struggle to be heard by their doctor as the illness robs them of speech and movement, yet no one has systematically studied how these clinical conversations unfold over time. This matters because MND progressively destroys the ability to speak, gesture, and even breathe, making routine medical consultations increasingly difficult for patients and their families. The existing evidence on communication in MND clinics is thin, leaving healthcare professionals without training tailored to the specific challenges these patients face—such as using eye-gaze technology or speaking through a ventilator. The researchers will follow 10–15 patients, each with a close person and a healthcare professional, over 12 months, interviewing them at six-month intervals and analysing recordings of actual consultations using conversation analysis and linguistic techniques. If successful, the project will produce a co-designed communication toolkit and training framework for clinicians and the public. This could reshape how end-of-life care planning is conducted for people with MND, ensuring that patients’ wishes are not lost as their ability to communicate fades. The findings will feed into existing regional online resources for staff and the public.
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Research question: What are the clinical communication experiences of people living with Motor Neurone Disease (plwMND) and their close persons with healthcare providers and do they change through disease progression? Background: Good communication is seen as imperative to high quality patient care, particularly for achieving positive outcomes in patient and healthcare consultations. Evidence about communication in clinical consultations for people with MND is limited but the knowledge gap prevents possible improvements to communication skills that are unique to the challenges that plwMND encounter. Aims and Objectives To better understand and improve communication experiences between patients with MND, their close persons, and healthcare professionals through three objectives; (1) a review of the literature to understand unmet communication needs of plwMND, barriers and facilitators and communication strategies among plwMND; (2) a longitudinal study comprising of interviews with plwMND, their close persons and healthcare professionals at different stages of disease progression and conversational analysis of an observed clinical consultation to explore patient – clinician interaction; and (3) co-production of guidance and communication training to ultimately improve communication and patient-centred care that supports care planning at the end of life. Methods: Longitudinal Study comprising of a systematic review, empirical data and co-production of a communication toolkit to aid consultations for people with MND. Empirical data collection will explore 10-15 cases. Each case will aim to recruit one patient, one close person and one healthcare professional for interviews and observations. The patient will be interviewed at approximately six-monthly intervals over a 12-month period to explore the experiences and communication challenges and impact to quality of life. Close persons and health care professionals will be interviewed once. Data will be analysed to draw out patterns within and between cases incorporating thematic analysis, corpus linguistics, and conversational analysis techniques. A co-design workshop will use the findings to inform policy guidance and develop a framework for an educational toolkit for healthcare professionals and citizens to improve communication skills with MND patients. Timelines for delivery: 24 months Anticipated Impact and Dissemination: Findings will be made available to the academic community, health and social care staff and the public through a range of sources to enable reach and impact (academic journals, seminars, staff newsletters, community groups and an engagement event). Findings will be implemented into existing regional initiatives (i.e. online end-of-life care toolkit for staff and members of the public) and used to recommend improvements to policy and practice guidance.
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