Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease
Open accessAbstract
Currently, there is a relative research lacuna in phenomenological research into the lived experience of motor neurone disease. Based on a sociological research project in the UK, involving 42 participants diagnosed with MND, this article explores the potential of a phenomenological sociology for analysing experiences of this drastically life-limiting neurological disorder. Calls have been made for sociological researchers to analyse more fully and deeply the sensory dimension of the lived body, and this article also contributes to this newly developing body of literature. While the social sciences have been accused of a high degree of ocularcentrism, here we take forward the literature by specifically focusing upon the haptic dimension, given that touch - and particularly the loss of key elements of the haptic dimension- emerged as salient in MND patients' accounts. To illustrate the potential of our phenomenologically inspired theoretical perspective, we consider two specific haptic themes: (i) being out of touch: the loss of certain forms of touch within MND and (ii) unwelcome touch by medical staff.
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Relationships and interaction with others are identified as important for patients with MND.
“Further to this and more generally, relationships and interaction with others was identified as important (3, 5, 11, 14, 16, 18, 19, 20, 25, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [3]
A number of patients with MND highlight the need for different support services that provide tangible assistance to care.
“A number of patients highlighted the need for different support services which provided tangible assistance to care (3, 11, 14, 16, 17, 21, 25, 26).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [3]
The cost of care can restrict care provision for patients with MND.
“The cost of care could restrict care provision (3, 10, 11, 20).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [3]
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- Authors
- Allen‐Collinson, J., & Pavey, A.
- Affiliations
- University of Lincoln (GB)
- The University of Queensland (AU)
- Corresponding author
- Allen‐Collinson, Jacquelyn
- Venue
- Sociology of Health & Illness
- Publisher
- Wiley
- Published
- 2014-07
- Volume
- 36
- Issue
- 6
- Pages
- 793-806
- ISSN
- 0141-9889 (ISSN-L)
- 1467-9566
- OpenAlex
- W2004198556
- Cited by
- 10
- References
- 67
- Citations by year
- 2026: 1 · 2024: 2 · 2020: 1 · 2019: 1 · 2018: 1 · 2016: 1 · 2015: 2 · 2014: 1
- FWCI
- 1.81
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Sociology of Health & Illness (publishedVersion)
- PubMed (publishedVersion)
- Lincoln Repository (University of Lincoln) (acceptedVersion)
- Figshare (submittedVersion, cc-by)
- Funders
- Motor Neurone Disease Association
- Topics
- Social Sciences › Psychology › Experimental and Cognitive Psychology › Phenomenology and Existential Philosophy
- Social Sciences › Arts and Humanities › General Arts and Humanities › Corporeality, Perception, and Education
- Social Sciences › Arts and Humanities › Philosophy › Mental Health and Psychiatry
- Keywords
- motor neuron disease, phenomenological sociology, touch, lived experience, sensory experience, healthcare workers, ocularcentrism, life-limiting illness
- MeSH terms
- Adult, Aged, Female, Humans, Interpersonal Relations, Male, Middle Aged, Professional-Patient Relations, Touch, Motor Neuron Disease, Qualitative Research
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