Occupational disruption: living with motor neurone disease
Abstract
Little is known of the day-to-day experience of living with motor neurone disease from the perspective of those who have it, apart from what can be found in personal accounts such as those published on web pages. In this study, which was informed by phenomenology, seven people living in an urban setting in New Zealand were asked to describe their experiences. This report focuses on the study findings that related specifically to disruption to occupation. It describes how early changes in occupational performance alerted the participants to the fact that something was wrong. The findings also showed the pervasive impact of an awkward and unreliable body on participation in occupations that gave meaning to life, expressed identity and filled time. Issues of how the family's world was changed, the introduction of assistive devices into their homes and the betrayal of trust were also powerfully evident in participants' stories. Although the findings are broadly consistent with those of previous studies, the disruption to occupation and the consequent role losses are new findings. Further research into the impact of the loss of participation in occupation, the ways in which people are perceived when occupations are disrupted and the experience of having occupations taken away prematurely is recommended.
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Patients with MND can feel frustration at the effects of the illness.
“This included being frustrated (2, 8, 11, 12, 15, 21, 25) at the effects of the illness.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [8]
Peers, friends, and close others become important to individuals with MND.
“In a similar way, peers friends and close others became important to individuals (4, 5, 8, 12, 16, 20, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [8]
Patients with MND use the strategy of planning activities and interactions to engage in.
“(d) Planning activities and interactions to engage in (4, 8, 11, 12, 14, 20, 27).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [8]
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Soundy, A., & Condon, N. (2015) · Frontiers in Psychology · doi:10.3389/fpsyg.2015.00606 · Cited by 35 · see citing works
“Twenty nine articles (Cobb and Hamera, 1986; Cox, 1992; Young and McNicoll, 1998; Brown, 2003; Murphy, 2004; Hughes et al., 2005; Brott et al., 2006; Hugel et al., 2006; Vitale and Genge, 2006; Brown and Addington-Hall, 2007; Foley et al., 2007, 2014a,b; Fanos et al., 2008; King et al., 2009;…”
Background
- Authors
- Brott, T., Hocking, C., & Paddy, A.
- ORCID
- Brott, Tamzin
- Venue
- British Journal of Occupational Therapy
- Publisher
- SAGE Publications
- Published
- 2007-01
- Volume
- 70
- Issue
- 1
- Pages
- 24-31
- ISSN
- 0308-0226 (ISSN-L)
- 1477-6006
- OpenAlex
- W2056231232
- Cited by
- 22
- References
- 40
- Citations by year
- 2026: 1 · 2024: 1 · 2023: 2 · 2022: 1 · 2021: 2 · 2020: 1 · 2019: 1 · 2018: 1 · 2017: 3 · 2015: 2 · 2014: 2 · 2013: 2 · 2012: 1
- FWCI
- 1.19
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- British Journal of Occupational Therapy (publishedVersion)
- Funders
- Auckland University of Technology, New Zealand
- Topics
- Health Sciences › Health Professions › Occupational Therapy › Occupational Therapy Practice and Research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › Occupational Therapy › Assistive Technology in Communication and Mobility
- Keywords
- motor neuron disease, lived experience, occupational performance, occupational participation, role loss, assistive devices, family impact, betrayal of trust, phenomenology, urban dwellers
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