Title: The Project About Loneliness and Social networks (PALS) study
Funder: Department of Health and Social Care

Abstract: Loneliness and social isolation affect about 30% of the adult population in the UK (1) with greater incidence in early and late adulthood with increased prevalence rates in specific at-risk groups, such as the elderly, minority communities, and those with long-term mental or physical health conditions who are significantly more isolated than those in good health (2-4). Defining loneliness and social isolation: Social isolation is considered to be an objective measure of a lack of social connections, contact or participation, while loneliness is a subjective psychological state where there is a discrepancy between desired and perceived levels of support or connectedness (5, 6). The problem: health implications of loneliness and social isolation: The impact of loneliness and isolation on well-being and the associated health risks has been identified as significant public health concern. Both loneliness and social isolation are associated with poor physical and mental health outcomes (8, 9) and reduced quality of life (10, 11) across key points in the life course. Loneliness and isolation are linked to poorer physiological outcomes such as raised blood pressure and increased health-risk behaviours (e.g. sedentary behaviour) (12). Their impact on mortality is estimated to exceed that of traditional major risk factors such as obesity and cigarette smoking, with a 50% higher risk compared with socially-integrated participants (13-15). There are also significant costs associated with raised demand and use of health services, and loneliness is associated with increased GP appointments, emergency hospital admittance and premature social care use (16-18). Factors influencing loneliness and social isolation: The ageing process, socio-economic deprivation (6), multi-morbidities and stigma associated with physical and mental limitations of some long-term conditions can contribute increased social isolation and feelings of loneliness (19, 20). Loss of employment through retirement or ill health can also have a detrimental impact on social status and connections with others (19). Reduced social contact and participation, social deprivation and widowhood are identified as additional risk factors (6, 21) which add barriers to sociability, creating a domino effect with a negative impact on quality of life (22, 23) and possible reinforcement of serious and sustained health related risk taking (24). Social factors to prevent or reduce loneliness and social isolation: Although the causes and drivers of loneliness and isolation are varied, social and emotional support from others is likely to be protective of the maintenance of health (25), with emerging evidence suggesting that improving the quality of interpersonal relationships and participation in social activities may be key to tackling the impact of loneliness (6). Evidence has indicated that increasing social interactions and the number of people who can be relied on is associated with reduced levels of distress (26), whilst connecting with community resources can help protect against loneliness for those who are most at risk (6, 27). Furthermore, there is evidence that social network interventions can significantly improve health outcomes, quality of life and increase the take-up of new activities (28, 29). A diverse and supportive network has been shown to reduce health service costs (30). A recent NICE quality standard recommends the navigation of older vulnerable people to community activities as a means of preventing loneliness in older people (27). Rationale for the current study In line with this evidence, there is a logical argument for introducing an effective social network intervention outside of the formal healthcare setting to connect people who are at risk of loneliness to others within their communities (27). The GENIE intervention involves mapping an individual’s social network, identifying areas where the individual may benefit from new support or activities, and helping to identify how they can go about creating these links in their local area. Creative engagement with non-traditional informal providers of wellness management (such as through accessing locally available community groups) offers an alternative opportunity to address health and social needs in an increasingly resource-stretched NHS. PALS study objective: Our research will evaluate the acceptability, effectiveness and cost-effectiveness of implementing the GENIE intervention to reduce loneliness and unwanted social isolation of adults within a community setting. PALS research plan: We will conduct a pragmatic, randomised controlled trial comparing the GENIE intervention to a waitlist control group among 394 adults. This will be called the INClude study. We will recruit any adult (aged 18 or over) who may be isolated or at risk of being lonely, focussing specifically on adults with any long-term condition (but will exclude those currently hospitalised, those with terminal disease or an acute exacerbation impacting on their ability to take part, or those with compromised capacity to participate). All participants allocated to the control group will be offered GENIE after the intervention group have completed the 6-month follow up. The primary outcome will be the difference between intervention and control groups in the SF-12 mental health summary scale at 6-month follow-up taking in to account baseline values. Secondary outcomes will include differences in social isolation, loneliness, wellbeing, self-efficacy, health status and utilisation.

Lay abstract: Around 30% of the UK population experience loneliness. Older people, and those with long-term health problems are far more likely to be lonely and isolated than those in good health. Feeling lonely and isolated also has a negative impact on a person’s emotional and physical health, and costs the NHS money due to more medical appointments and hospital visits. Evidence has shown that connecting with community resources can help protect against loneliness for those most at-risk. The INClude study will test if it is possible to reduce the negative impacts of loneliness and social isolation by focussing on the support networks that people have around them. GENIE is an online tool that allows people to map their social networks (which may include friends, family, groups, pets, daily activities). It also asks people about their interests and activities they might like to try to match them up with local activities. We will explore how GENIE can be used to improve social networks using existing local community groups and resources, to provide emotional and physical health benefits to participants. We will work with many different types of local groups and organisations – including the NHS, housing associations, Fire service, Care and support organisations, health and community groups to help us to access those who are most isolated and lonely in two regions in the North and South of England (centred around Southampton and Liverpool). Any adult known to these groups will be eligible to take part. Half of the people in the INClude study will be randomly selected to use GENIE. With the help of a facilitator, people using GENIE will be asked to think about the role of people around them, and how their networks might be improved, by including other people already around them who they did not initially think of, or from new connections to community activities. We have found that after using GENIE, people are able to build on existing relationships, as well as meet others with similar interests, which improves their sense of connection to the local community. The remaining people in the study will carry on as usual but will be able to use GENIE with a facilitator, if they want to, after 6-months once the study has finished. We will select a small number of people for interview to understand their experiences of loneliness and isolation, and how this might have changed because of the study. The study will help us to understand how we can best use existing community groups, resources and organisations to access and help those most at risk. It will help us understand how reducing isolation and feelings of loneliness happens after using GENIE. The Campaign to end loneliness are also collaborating with the study team. By including a wide range of stakeholders we hope to share our findings more broadly and innovatively than within an academic context and if effective, we will be able to provide evidence for policy makers. The study website can be found at https://includewessex.wordpress.com

Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING
Health categories: GENERIC HEALTH RELEVANCE