ALIGN-MND: Advance and Personalised Care Planning in MND
Research type
Research Study
Full title
Advance and personalised care planning in MND: utilising ethnography to explore patient and clinician experiences to co-develop guidelines for improving communication
IRAS ID
360973
Contact name
Alys Wyn Griffiths
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
1 years, 4 months, 30 days
Research summary
Advance care planning (ACP) is essential for people with motor neuron disease (MND) to express their values and treatment preferences as the disease progresses. Early, well-supported ACP discussions can empower individuals and ensure care aligns with their wishes, yet these conversations are often delayed or avoided due to discomfort among patients, families, and clinicians. The absence of clear guidelines and consistent approaches contributes to communication challenges and unmet needs in MND care.
Focused ethnographic observations of planned appointments will be conducted with 10-12 people living with MND and their families (consisting of 10-16 family members and friends) across three NHS sites in North England to understand how these conversations are held and unmet support needs. This data collection will incorporate ethnographic observations, including planned appointments with HCPs, informal conversations, semi-structured interviews, and the review of medical notes, clinic letters, and other ACP-related documentation.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
25/YH/0248
Date of REC Opinion
4 Dec 2025
REC opinion
Favourable Opinion