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

Journal article

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

Disability and Rehabilitation | TAYLOR & FRANCIS LTD | Published : 2022

DOI: 10.1080/09638288.2020.1855261

Abstract

Purpose: Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Methods: Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Results: Data analysis identified six overarching themes: Dimensions of decision making;..

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University of Melbourne Researchers

Camille Paynter Author

Adam Vogel Author

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Grants

Awarded by Motor Neurone Disease Research Australia

Funding Acknowledgements

Ms Paynter is funded by a joint NHMRC/MNDRA postgraduate scholarship [#1133541]. Dr Mathers reports no relevant disclosures. Dr Gregory reports no relevant disclosures. Prof Vogel is funded by National Health and Medical Research Council, Australia Dementia Fellowship [#1135683]. A/Prof Cruice reports no relevant disclosures.