Occupational Therapy and Important Occupations in MND
Research type
Research Study
Full title
Experiences and decision-making processes leading to premature withdrawal from important occupations in Motor Neurone Disease (MND): coproduction of a novel Occupational Therapy intervention to promote occupational engagement: The MNDOT study
IRAS ID
334431
Contact name
Lisa Bushby
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Motor Neurone Disease (MND) is characterised by progressive damage to motor neurones in the brain and spinal cord, resulting in progressive muscle weakness and wasting. It can affect movement, speech, swallowing, breathing and, in some people, thinking and behaviour. MND is a life-shortening disease and advanced-care planning is essential to support decisions about equipment, adaptations, care, feeding and ventilation (breathing aids). Occupational Therapists (OTs) play an essential role in supporting people with MND and their families. Home adaptations and essential or assistive equipment (e.g. environmental control systems and ventilators) can support
engagement with and maintenance of important occupations, improving quality and length of life. However, healthcare-professional, patient and carers’ tacit knowledge show some people with MND appear to develop extreme anxiety and claustrophobic symptoms which effects their ability to use such equipment. Patient and carer involvement has shaped development of this project plan. Multi-stakeholder discussions indicate improved understanding of this phenomenon will enable OTs to
intervene and better support people with MND, extreme anxiety and, or, claustrophobic symptoms to live longer, more comfortable lives.This study, supported by multi-stakeholder involvement, will synthesise existing research on anxiety and claustrophobic symptoms amongst those with MND. This will influence outlined plans for evidence generation via interviews, focus groups, note reviews, and survey. Findings will allow OTs to use their unique skills to support people with MND, extreme anxiety and, or, claustrophobic symptoms to continually engage with important occupations and fully utilise equipment and adaptations available to them. Where needs are found to be currently unmet further research and
innovation will be stimulated. To this end, findings will underpin a co-production workshop to reach consensus on needed elements within a novel OT-led intervention for those with MND and extreme anxiety or claustrophobic symptoms to improve their quality and length of life.REC name
London - Bloomsbury Research Ethics Committee
REC reference
24/PR/0333
Date of REC Opinion
11 Apr 2024
REC opinion
Unfavourable Opinion