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Research project: Assessing the value and impact of constructing illness trajectories for enhancing patient self-management and service delivery in motor neurone disease - Dormant - Dormant

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Motor neurone disease (MND) is a progressive, fatal disease that robs its victims of the ability to walk, talk and care for themselves. Everyday in the UK , three people die from MND and some 5,000 are living with it. As no cure exists, patients, families, carers and health and social care professionals must deal with complex and increasing care needs. This project is concerned with improving the quality of life and quality of care for people with MND.


Detailed information will be gathered  about the experience of living with MND from patients and their carers. This will enable her to construct illness journeys with guidance options for people with MND on ways to cope and manage issues resulting from this progressive disease. Evaluation of these journeys and guidance options by patients, carers and professionals aims to reveal their impact and potential for promoting self-management for people with MND.

Main question(s)

  • What are the illness journeys of people with MND?
  • What strategies do people with MND employ to cope and manage their illness journey?
  • What is the value and impact of illness journeys and guidance options for enhancing self-management?


Prospective and evaluative case studies

Main outcomes

The construction and evaluation of illness journeys and guidance options on coping in MND to determine their value in enhancing self-management in MND.

Project team

Janice Brown 

Project funder

Health Foundation (formerly PPP) 2007

Related research groups

Complex Healthcare Processes
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