Exploring communication between people living with motor neurone disease and their close persons with healthcare professionals: a longitudinal qualitative United Kingdom study protocol

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INTRODUCTION: Good communication is imperative to high-quality patient care, particularly for achieving positive outcomes in healthcare consultations. Evidence about communication in clinical consultations for people with motor neurone disease (MND) is limited, but the knowledge gap prevents possible improvements to communication skills that are unique to the challenges that people living with MND encounter. This research aims to better understand and improve communication experiences for patients with MND. METHODS AND ANALYSIS: A 24-month qualitative longitudinal study whereby data collection will explore 10-15 cases of persons living with MND. For each case, we will recruit one patient, one close person/carer and one healthcare professional for separate interviews alongside an observed clinical consultation. The patient will be interviewed three times at approximately 4-6-month intervals over 12 months to explore the changing experiences, communication challenges and impact on quality of life. Close persons and healthcare professionals will be interviewed once. Data will be analysed to draw out patterns within and between cases, incorporating thematic analysis, corpus linguistics and conversation analysis techniques. ETHICS AND DISSEMINATION: Ethical approval was granted by the Health Research Authority (ref: 26/WM/0026).A co-design workshop will develop a framework for an educational toolkit for healthcare professionals to improve communication skills with MND patients. Findings will be disseminated to the academic community, healthcare staff and the public to increase reach and impact (academic journals, seminars, conferences, newsletters, community groups and engagement events). We will make recommendations for improvements to policy and practice. TRIAL REGISTRATION NUMBER: ISRCTN15571034.

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