Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study
Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study
Objective: We aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.
Design: Qualitative study using semi-structured interviews with people with MND and caregivers.
Setting: Participants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.
Participants: 25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.
Data analysis: Data were analysed using inductive reflexive thematic analysis.
Results: Eight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.
Conclusion: The study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.
anxiety disorders, depression & mood disorders, motor neurone disease, qualitative research
Pinto, Cathryn, Lisa
8173c095-7b5c-4aca-b44a-86451c93e2fd
Geraghty, Adam
2c6549fe-9868-4806-b65a-21881c1930af
Yardley, Lucy
64be42c4-511d-484d-abaa-f8813452a22e
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
17 August 2021
Pinto, Cathryn, Lisa
8173c095-7b5c-4aca-b44a-86451c93e2fd
Geraghty, Adam
2c6549fe-9868-4806-b65a-21881c1930af
Yardley, Lucy
64be42c4-511d-484d-abaa-f8813452a22e
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
Pinto, Cathryn, Lisa, Geraghty, Adam, Yardley, Lucy and Dennison, Laura
(2021)
Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study.
BMJ Open, 11 (8), [e044724].
(doi:10.1136/bmjopen-2020-044724).
Abstract
Objective: We aimed to get an in-depth understanding of the emotions experienced by people with motor neurone disease (MND) and their caregivers, and to explore what impacts emotional distress and well-being.
Design: Qualitative study using semi-structured interviews with people with MND and caregivers.
Setting: Participants were recruited from across the UK and took part in interviews conducted either face to face, by telephone or email to accommodate for varying levels of disability.
Participants: 25 people with MND and 10 caregivers took part. Participants were purposively sampled based on their MND diagnosis, symptoms and time since diagnosis.
Data analysis: Data were analysed using inductive reflexive thematic analysis.
Results: Eight broad themes were generated (20 subthemes). Participants described the emotional distress of losing physical function and having a threatened future because of poor prognosis. Keeping up with constant changes in symptoms and feeling unsupported by the healthcare system added to emotional distress. Finding hope and positivity, exerting some control, being kinder to oneself and experiencing support from others were helpful strategies for emotional well-being.
Conclusion: The study provides a broad understanding of what impacts emotional distress and well-being and discusses implications for psychological interventions for people with MND and caregivers. Any communication and support provided for people with MND and their caregivers, needs to pay attention to concepts of hope, control and compassion.
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More information
Accepted/In Press date: 17 August 2021
Published date: 17 August 2021
Additional Information:
Funding Information:
Funding This work was supported by the Motor Neurone Disease Association, UK under Grant (Yardley/May17/891-792).
Publisher Copyright:
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Keywords:
anxiety disorders, depression & mood disorders, motor neurone disease, qualitative research
Identifiers
Local EPrints ID: 451097
URI: http://eprints.soton.ac.uk/id/eprint/451097
ISSN: 2044-6055
PURE UUID: f2775bf3-d8fb-4216-acc9-6441689e2927
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Date deposited: 07 Sep 2021 16:34
Last modified: 06 Jun 2024 01:48
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