Advance and Personalised Care Planning in MND: utilising ethnography to explore patient and clinician experiences to co-develop guidelines for improving communication

Background: Motor neuron disease (MND) is a rare, progressive and currently incurable neurological condition, with two to three years average life expectancy following diagnosis. Current care pathways focus on prolonging life and sustaining quality of life and function. MND progression is unpredictable but often rapid, meaning decisions about future care are complex. Advance care planning (ACP) is key to ensuring people with MND s wishes are met. ACP done well can empower people to have choices and feel in control despite unpredictable circumstances. However, no guidelines exist to support healthcare professionals (HCPs) to plan and hold such conversations, and limited information is available for people with MND and their families. There is wide variation in when and how people are having these conversations, and many HCPs lack confidence in facilitating these. This study aims to explore current practice in ACP conversations for people with MND, understand gaps in provision, and highlight barriers and facilitators to ACP processes and conversations from multiple perspectives. Research question: How can we empower people with MND, their family members, and HCPs to hold important but challenging conversations throughout the disease that give people with MND choice and control over their own care? Methods: This study comprises three interrelated workstreams (WSs). WS1 will conduct longitudinal focused ethnography on planned appointments within MND clinics at three multidisciplinary services. People with MND will be observed in 3-4 days of appointments over 6-8 months, covering key disease milestones. Informal conversations and interviews will be facilitated with people with MND, family members and HCPs to explore observed discussions. Data will be analysed using ethnographically-informed framework analysis. Four focus groups will be conducted with HCPS who work with people with MND during WS2. These will explore experiences of holding ACP-related conversations, managing leadership and decision-making, barriers and facilitators and training needs. Data will be analysed using reflexive thematic analysis and mapped to the Theoretical Domains Framework. WS3 will comprise three co-production workshops to develop guidance and resources. People with MND and their families, bereaved family members, and HCPs, including WS1 and WS2 participants, will be invited (n=30 in total). Using evidence-based co-design, facilitated discussions will be used to develop guidance and resources for ACP-related conversations with people with MND. A World Cafe; approach will be utilised, to reflect on study findings, refine guidance and finalise resources. Recommendations, training materials and information packs will be finalised in an online synthesis session before being refined and disseminated. Anticipated impact and dissemination: Our dissemination strategy will be co-developed with the Lay Advisory Group. We will provide important evidence around the experiences of the process of ACP for families affected by MND. We will develop guidance and training materials for HCPs to improve service delivery, alongside information packs for people with MND and their families. This study will generate immediate benefit for people with MND in the participating trusts and broader impacts across the UK, through improved communication around ACP and decision-making processes. We will work closely with the MND Association to implement our outputs.