Exploring technology use by those living with motor neurone disease
Research type
Research Study
Full title
Exploring technology use by those living with motor neurone disease
IRAS ID
178727
Contact name
Esther Hobson
Contact email
Sponsor organisation
Sheffield Teaching Hospitals
Duration of Study in the UK
0 years, 4 months, 16 days
Research summary
Motor neurone disease is a condition affecting approximately 5 000 people in the UK causing weakness in muscles, paralysis, disability, and eventually death. Patients and their families need expert information and support to manage their condition and plan for the future. Many people use technologies such as computers and tablet computers to find information and keep in contact with their friends and family. Systems are also being developed that can enable specialist teams to use this type of technology to monitor and communicate with patients.
Clinicians at the Sheffield MND clinic have already developed a number of ways to use technology to improve the care for those living with with MND. These include a monitoring system (TiM: telehealth in motor neurone disease) which is currently undergoing an initial evaluation and a website devoted to the use of breathing machines in MND.
This study aims to explore how patients and their families use technology to gain information, the barriers and incentives to its use and their attitudes to the use of this type of technology to improve the care offered to patients by specialist teams.
This project will do this by:
1) Conducting a postal survey inviting all patients and their family/friends who attend the Sheffield MND clinic.
2) Conducting interviews with a small number of those affected by MND (patients, family and friends) who attend the Sheffield MND clinic exploring their experiences in depth. The interviews will aim to identify both common types of experiences as well as some of the range of experiences faced by the participants.The results of the questionnaire and interviews will be analysed together and the results of this study will guide how future technologies are harnessed to improve MND care. They will be relevant to other chronic diseases, where self-management plays an important role in their care.
REC name
North West - Preston Research Ethics Committee
REC reference
15/NW/0370
Date of REC Opinion
23 Apr 2015
REC opinion
Favourable Opinion