Supporting participation in social and community life for people with neurological conditions

Staying socially connected can improve wellbeing, reduce feelings of loneliness, and improve quality of life. However, there may be barriers which make taking part in community life more difficult for people with MND and similar conditions. This study explores how people with MND and other neurological conditions take part in social life. The study aims to identify what support or interventions are available to help people stay connected (such as in-person groups, online activities or community-based services), and things which could be improved.

The researchers will do this using surveys, interviews, and focus groups to hear directly from those living in Wales with lived experience as well as people who support them, such as health and social care professionals, and activity organisers. The researchers hope that this study will inform future services, community programmes, and policies, so that people with MND have more opportunities to stay socially involved, in ways which matter to them. 
 

Taking Part

What does taking part involve?

People who take part will be asked to complete a survey. There are three different surveys, one for people with MND, one for health and social care professionals, and one for activity organisers. The surveys can be completed online, by telephone, or on paper. The surveys will ask about experiences of taking part in/organising community activities. 

There will be an opportunity to take part in a follow-up one to one interview. This is optional. The interview will give people a chance to share experiences in more detail. This can be done by telephone, video call, or in-person. 

People who work or volunteer in community organisations can also choose to take part in a focus group, which will include a group discussion to talk about their views and experiences. 

Who can take part?
  • People living with MND
  • Health and social care professionals who support people with neurological conditions
  • People who organise or deliver community activities, services, or groups for individuals with progressive neurological conditions
  • Participants must be over 18 and living in Wales

How can I take part?

To take part in the study, visit the social connections survey. For more information, or to take the survey by phone or on paper, please contact Hannah Trotman at [email protected]

Study location

Wales

Funding

This study is funded by Health and Care Research Wales