How can services help people with loneliness after ABI v1
Research type
Research Study
Full title
How can services help and support people experiencing loneliness following acquired brain injury?
IRAS ID
320216
Contact name
Emma Berry
Contact email
Sponsor organisation
Queens University Belfast
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
Research Summary
Loneliness is a serious and increasing problem which can negatively impact physical and mental health. Loneliness is defined as when the need for social connection is not met. Research shows loneliness is a significant problem for people with acquired brain injury (ABI). Loneliness in people with ABI may be increased due to practical problems preventing interaction with others or by difficulties within interactions which prevents feeling authentic connection with others.\nThere is limited research on interventions for loneliness for people with ABI and more information is needed on what makes interventions effective. Any interventions developed need to be acceptable to service-users and service-providers and give sufficient consideration to any practical issues. By asking 3 groups of stakeholders (people with ABI, their families and informal carers, and people who work in ABI services) how services can best help with loneliness, this project aims to gather data which can be used to inform the development of loneliness interventions.\nThese stakeholders will participate in a short survey followed by an online workshop called a World Cafe. A World Cafe is similar to focus groups, where 4-6 people discuss in a group, but participants swap into different groups for each 20 minute discussion round. The purpose of this is to bring different perspectives together and allow ideas to develop. After 3 discussion rounds, everyone votes on the most important points and then discusses the results. The survey responses will inform the World Café discussions. The world cafe will be recorded and transcribed. The transcript of the world cafe and the survey questions will be qualitatively analysed using thematic analysis\nIn each small group there will be a facilitator from Queens University or the Northern Trust Brain injury service. The World Café will be split across 2 sessions of 1.5 hours per day.
Summary of Results
People who have an acquired brain injury (ABI) often feel lonely for a long time, and this loneliness is not just about being on your own but also how individuals affected feel within themselves. Currently, health and rehabilitation services have little clear guidance on how to properly support people with ABI who feel lonely, and existing guidelines often ignore the realities of everyday practice, which makes them hard to put into action. This study aimed to find out, using the views of people with lived and professional experience, how services can better help with loneliness after brain injury.
The researchers used an online “World Café” approach, which is a structured group discussion method where people move between small-group conversations to share ideas and experiences. Over two days, 16 people took part, including survivors of brain injury, family members, and professionals who work with them. Together, they discussed what services are currently like and what could be improved to better address loneliness.
From these discussions, the team developed a set of recommendations grouped into three main areas. First, services should be planned and delivered in ways that are genuinely based on survivors’ needs, not just on standard routines or targets. Second, support should not focus only on the individual; it should also look at families, communities, and the wider system (for example, how services are organised and funded) so that loneliness is addressed at multiple levels. When combined, these ideas point towards more holistic, person‑centred support for loneliness, meaning care that sees the whole person and their life context rather than just their injury.
The outcomes of this participatory process offer practical, real‑world guidance for developing services that match what survivors, families and professionals say they actually need. By centring the subjective, lived experience of loneliness after ABI, the study helps build a “bottom‑up” understanding that can shape future services and make it more likely that any new recommendations can be successfully put into practice.REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
22/NW/0396
Date of REC Opinion
28 Mar 2023
REC opinion
Further Information Favourable Opinion