Communication, Quality of Life and Advance Care Planning for People With Motor Neurone Disease and Their Caregiver

Grant number: 1133541 | Funding period: 2017 - 2021

Completed

Abstract

People with motor neurone disease experience devastating deterioration in movement, communication, swallowing and ultimately breathing. Research is required to determine if the advance care planning (ACP) process for people with MND is impacted by communication impairment. This study will build evidence to improve the ACP process for this vulnerable patient group. It also aims to investigate the impact communication impairment has on caregivers’ quality of life in order to improve carer support.

Related publications (5)

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The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study

C Paynter, S Mathers, H Gregory, AP Vogel, M Cruice

2022-11-01

Background: Communication and cognitive impairments are known barriers to shared decision-making. Most people diagnosed with motor..

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Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

C Paynter, S Mathers, H Gregory, AP Vogel, M Cruice

2022-08-01

The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the imp..

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How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration

C Paynter, S Mathers, H Gregory, AP Vogel, M Cruice

2022-01-01

Purpose: Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision mak..

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Effects of face masks on acoustic analysis and speech perception: Implications for peri-pandemic protocols

Michelle Magee, Courtney Lewis, Gustavo Noffs, Hannah Reece, Jess CS Chan, Charissa J Zaga, Camille Paynter, Olga Birchall, Sandra Rojas Azocar, Angela Ediriweera, Katherine Kenyon, Marja W Caverlé, Benjamin G Schultz, Adam P Vogel

2020-12-01

Wearing face masks (alongside physical distancing) provides some protection against infection from COVID-19. Face masks can also c..

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How can we improve patient-centered care of motor neuron disease?

A Hogden, C Paynter, K Hutchinson

2020-04-01

This perspectives paper discusses patient-centered care for people living with motor neuron disease. We identify challenges and of..

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