Motor Neurone Disease and the NSF for long-term neurological conditions

Allen‐Collinson

Sociological Research Online

2013

Relatively few previous studies of individuals receiving a diagnosis of Motor Neurone Disease within the UK health care system have employed qualitative approaches to examine the diagnostic journey from a patient perspective. A qualitative sociological study was undertaken, involving interviews with 42 participants diagnosed with MND, to provide insight into their experiences of undergoing testing and receiving a diagnosis. Adopting a sociological-phenomenological perspective, this article examines key themes that emerged from participant accounts surrounding the lived experience of the diagnostic journey. The key themes that emerged were: The diagnostic quest; living with uncertainty; hearing bad news; communication difficulties; and a reified body of medical interest. In general, doctor-patient communication both at pre and post diagnosis was experienced as highly stressful, distressing and profoundly upsetting. Participants reported such distress as being due to the mode of delivery and communication strategies used by health professionals. We therefore suggest that professional training needs to emphasize the importance to health professionals of fostering greater levels of tact, sensitivity and empathy towards patients diagnosed with devastating, life-limiting illnesses such as MND.

Section: Resultsmentioning

confidence: 99%

“…Individuals with MND will have been experiencing symptoms for a period of time prior to receiving an official diagnostic label (Clarke et al 2001). Life expectancy from diagnosis is estimated at between 2–5 years (Holmes 2005). At any one time in the UK it is estimated that 5000 people are living with MND (Clark & O'Brien 2006).…”

Section: Introductionmentioning

confidence: 99%

The Lived Experience of Diagnosis Delivery in Motor Neurone Disease: A Sociological-Phenomenological Study

Allen‐Collinson

Sociological Research Online

2013

Journal of Advanced Nursing

“…Intellect generally remains, intact although cognitive impairment has been reported in approximately 5% of people (Leigh et al 2003). The low global incidence of MND is approximately 2:100,000 (Mandrioli et al 2003, Motor Neurone Disease Association 2007 and, although survival is often cited as between 2 and 5 years (Holmes 2005), this depends on the type of MND. Three principal types have been identified (Beresford 1995): amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP) and progressive muscular atrophy (PMA).…”

Section: Background Motor Neurone Diseasementioning

confidence: 99%

How people with motor neurone disease talk about living with their illness: a narrative study

Brown

Addington‐Hall

2008

“…). Life expectancy from diagnosis is usually estimated at between 2 and 5 years (Holmes ) for those with the most common form of MND: amyotrophic lateral sclerosis, but the speed of illness progression is highly variable, and some people die within only a few months. The condition can thus be construed as lying at the boundary between a chronic and a terminal illness (Locock et al .…”

Section: Introductionmentioning

confidence: 99%

Touching moments: phenomenological sociology and the haptic dimension in the lived experience of motor neurone disease

Allen‐Collinson

Sociology Health & Illness

2014

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.