Title: Conceptualising loneliness for people with learning disabilities (PwLD): a co-designed intervention to support social connectedness in social care settings
Funder: Department of Health and Social Care

Abstract: Research titleConceptualising loneliness for people with learning disabilities (PwLD): a co-designed intervention to support social connectedness in social care settings. BackgroundLoneliness is a serious problem with significant physical and mental health consequences. Loneliness is defined as a mismatch between the quantity and quality of the social relationships that we have, and those that we want. PwLD are seven times more likely to be lonely than their non-disabled peers and they are at greater risk of a range of health problems, dying on average 15-20 years earlier than the general population. These poor outcomes show there is an urgent need to improve life chances for PwLD. However, to date little is understood of how loneliness is experienced by PwLD in their everyday lives, which is essential to support person-centered and meaningful social connections. Given that support staff tend to be a regular presence in the lives of the people they support, they are arguably well placed to help people with PwLD become more socially connected in their lives and thus ameliorate loneliness. Aims To conceptualise how PwLD experience loneliness and to co-design an intervention to enable PwLD to become more socially connected in their lives. This is a 40-month study made up of three distinct but interrelated phases: Phase one: Conceptualising loneliness for PwLD using evidence review and creative methods Undertake a scoping review to appraise and map the existing literature on loneliness and social connectedness to inform the work in this project with PwLD. Creative methods activities and a focus group will be undertaken with PwLD (n=8) over a period of eight months. Theoretically underpinned by the Mosaic Approach, observations and materials produced during this phase will be subject to thematic analysis to build up a holistic picture of how PwLD express their experiences of loneliness, being socially connected and of the facilitators and barriers to these experiences in the context of their support.Phase two: Ethnographic case studies In-depth ethnographic case studies undertaken with different LD services (n=4) over a period of 12 months. Participant observation (recorded with extensive field notes) will be conducted with formal and informal interviews with participants at each case site, including family/friends of PwLD (n=40; n=10 interviews at each site). Ethnographic material will be subject to inductive/deductive coding and analysed using thematic analysis. Building on Phase one material, that will capture the views of PwLD, this Phase will seek to capture actions and interactions in the wider context of people's support to determine what this reveals of the facilitators and barriers to enabling social connectedness among PwLD in these settings.Phase three: Co-designing an intervention The findings from Phase one and Phase two will be used to co-design an intervention with individuals involved in LD services to provide guidance and training that will enable social care staff to help the people they support become more socially connected in their lives.

Lay abstract: This study aims to understand how people with learning disabilities experience loneliness. Social connectedness may help to address loneliness. Thus, this study also aims to enable staff in support settings to help people with learning disabilities be more socially connected in their lives. Loneliness is a serious problem. It negatively impacts people's physical and mental health. People with learning disabilities are seven times more likely to be lonely than non-disabled people and on average they die 15-20 years earlier than the general population. We need to better understand how people with learning disabilities experience loneliness and how being socially connected can help them. Staff who already support people with learning disabilities are well placed to help them become more socially connected in their lives. I spoke with six people with learning disabilities and their families. Some people with learning disabilities found it difficult to express in words their experiences of loneliness. This means it can be challenging for others to understand how these experiences affect people with learning disabilities in their everyday lives. These discussions have guided the steps I will take in completing this research. This is a three-year study involving two separate but related methods: Method 1): to overcome the barriers to talking about their experiences of loneliness I will undertake creative activities and a focus group with eight people with learning disabilities over a period of eight months to give them the opportunity to express their views and experiences in different ways. Activities will include collage, walking while talking, storytelling and the use of objects that represent feelings of loneliness. Some people were able to talk about their experiences of loneliness, but turned loneliness on its head and instead spoke about what made them feel happy. For example, one man said: 'When they feel lonely, they need love inside them .... close love, like me and my mum'. Informed by this, during the activities and focus group I will also focus on what helps people with learning disabilities to be socially connected in their lives. Method 2): I will spend 12 months in four different learning disability services. I will observe everyday actions and conversations and I will have informal chats and conduct formal interviews. I will do this to see if different types of services affect whether staff are able to help the people they support to be more socially connected. In a discussion with one woman with learning disabilities, she explained how during the lockdown, 'there are people around but I still feel lonely. I know what it is: I don't have the church connections'. This suggests that it matters who people spend time with and not just that they are around others. Importantly, I will be interested in seeing whether staff are able to help people they support to be socially connected in ways that are meaningful to them. Based on what I learn from the creative activities, focus group and spending time in different support settings, I will create guidance and training that enables staff to help the people they support to be more meaningfully socially connected. This may help them to be less lonely. To make sure that this guidance and training are effective, I will work with people involved in learning disability services to co-design it. To ensure this project continues to be relevant for the people it is about, I will set up an Advisory Group made up of people with learning disabilities, their families/friends, service providers, academics, policy makers and third sector organisations. I will regularly meet with this group who will advise me for the project's duration.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL;7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH