Helping people with MND to cope with everyday activities and equipment
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: Work Package 1)
IRAS ID
343453
Contact name
Lisa Bushby
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
People living with Motor Neurone Disease (MND) experience progressive muscle weakness, affecting movement, speech, swallowing and breathing. Occupational Therapists (OTs) support people with MND to engage in things they need or want to do (known by OTs as ‘occupations’) using assistive equipment/adaptations (e.g wheelchairs and ventilators). Some people develop anxiety and claustrophobia affecting their ability to use this equipment leading to a premature withdrawal from their occupations, impacting on their quality and length of life. Understanding decision making during this process is a key MND community priority. This study (work package (WP) 1), developed with people with MND and carers, will examine the research question: ‘what is known about the interaction between anxiety, claustrophobia, and the impact on decision-making and use of assistive devices in MND?’. We will use information from WP1 to develop interview and focus group guides (WP2) and a survey and workshop (WP3) to develop a new intervention to prevent and better manage these symptoms. This IRAS application only refers to WP1 (we will apply later for WP2-3).
WP1a aims to understand current evidence on anxiety/claustrophobia and decision making about assistive equipment. In partnership with a person with MND, we will review published literature and social media posts in a publicly available, anonymous MND Association support forum.
WP1b aims to understand what information on decision making about assistive equipment is available in clinical case notes (n=20), to help coproduce WP2 and 3. Eligible patients will be identified by a clinical team at the MND Care and Research Centre and invited to contact the research team. Written consent will be taken following which only one member of the research team (LB) will have access to clinical case notes for only a 6-week period. All data will be fully anonymised before it is shared with the full research team.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
24/NE/0120
Date of REC Opinion
1 Aug 2024
REC opinion
Further Information Favourable Opinion