Journal article

Foregrounding Communication Access in Person-Centred Decision Making for People with Motor Neurone Disease: A Narrative Review

C Paynter, S Mathers, A Vogel, M Cruice

Healthcare Switzerland | MDPI AG | Published : 2026

Open access

Abstract

Effective motor neurone disease (MND) management depends on patient and carer involvement in decisions about interventions and future care. Communication and cognitive impairments are common in MND and have under-recognised consequences for shared decision making and autonomy. This narrative conceptual review draws on empirical qualitative research with people living with MND and unpaid family carers and the literature specifically concerning shared decision making and communication in MND. Themes relating to communication, information use, and decision making styles were mapped onto an ALS/MND multidisciplinary decision making model. Enhancements to the model include expanding the decision ..

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University of Melbourne Researchers