Experiences of Informal Caregivers of people with MND/ALS
Research type
Research Study
Full title
The Experiences of Informal Caregivers of people with Amyotrophic Lateral Sclerosis (ALS)/motor neuron disease (MND)
IRAS ID
313806
Contact name
Haris Stavroulakis Stavroulakis
Contact email
Sponsor organisation
University of Sheffield
Clinicaltrials.gov Identifier
JPND-2013-1, Co-funder's reference number
Duration of Study in the UK
1 years, 3 months, 31 days
Research summary
Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) is a rapidly progressive neurological disease that has no known cure. People living with ALS/MND lose the ability to move, speak, swallow, and eventually breathe on their own. Therefore, people living with ALS/MND require a high level of care, and family members often become carers.
Previous research has shown that there are practical, social, economic, and emotional impacts on ALS/MND carers. However, not everyone is affected in the same ways, and a previous study showed there are some differences between countries. Therefore, we want to understand more about the complex experiences of caring so that better support can be provided.
To do this, ALS/MND carers will be invited to attend focus groups or interviews. In these sessions, participants will be asked questions about their experiences of caring for someone living with ALS/MND. Afterward, the conversations will be analysed qualitatively to identify themes.
The results of this study will be shared to inform future research and clinical practice, to ensure ALS/MND carers are able to access the support they need.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
22/YH/0287
Date of REC Opinion
16 Dec 2022
REC opinion
Favourable Opinion