Research and analysis

Qualitative research exploring how and why young disabled people experience loneliness and what could be done to reduce it

Published 7 January 2025

Applies to England

This research was commissioned under the 2022 to 2024 Sunak Conservative government

Glossary

Anticipated Stigma - Fear of being judged or of receiving negative reactions in the future. 

  Chronic loneliness -  Loneliness that is experienced often or always. 

Co-production - Process of collaboration between people who use services and those who provide them. 

DCMS - The Department for Culture, Media, and Sport. 

  Demographic factors -  Personal characteristics, such as gender and age.   

Disability -  Someone is disabled under the Equality Act 2010 if they have a physical or mental health condition that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. This definition encompasses a wide range of health conditions.   

Experienced / actual stigma - People’s reported experience of stigma from others.   

Framework / framework method -   A method for extracting and analysing data, whereby each row represents one paper, and each column represents a research question or sub-question.   

Formal support -  Support that can come from governments, institutions, communities, and other formal organisations.   

Informal support - Support provided by people you know, such as family, friends, and neighbours.   

Intersectionality -  The understanding that inequalities are interdependent and indivisible from one another: ‘race, class, gender, sexuality, ethnicity, nation, ability, and age operate not as unitary, mutually exclusive entities, but rather as reciprocally constructing phenomena’. ^{[footnote 1]}   

Loneliness -  A subjective, unwelcome feeling of lack or loss of companionship. It happens when we have a mismatch between the quantity and quality of social relationships that we have, and those that we want. ^{[footnote 2]}   

Neurodivergent -   An umbrella term that describes people with variation in their mental functions, and can include autism and ADHD.   

Perceived stigma - The belief that others might hold negative stereotyped views of a certain condition or behaviour.   

Purposive sampling -  Sampling which is not based on probability and people included are selected based on characteristics that they possess.   

Qualitative research and data -   Research methods which gather non-numerical data, such as data from interviews.

Stigma - The disapproval of, or discrimination against, an individual or group based on perceived characteristics.   

VCSE organisations - Voluntary, community, or social enterprise organisations.

Young people - This research focused on young people aged 16-24. 

Summary of key findings

Activities, groups, meeting others with disabilities, and social prescribing

Finding

While extracurricular activities run by the VCSE sector, health services, and local government provided opportunities for some young people to meet others with similar experiences or interests, it was also reported that activities were poorly advertised and some young people were unsure how to find out about these groups. Furthermore, some stakeholders highlighted a lack of social prescribing as a common barrier to tackling loneliness which limited referrals. Some participants also expressed that they would like to meet more people with the same disability or health condition, as this would contribute to closer friendships and increased overall satisfaction with their social connections.  Furthermore, extra-curricular groups were not always considered accessible (physically or financially) or appropriate for all young disabled people, for instance with regards to age or level of health-related needs.

Recommendation

Support the VCSE sector and local government to increase provision of groups for those with common interests and experiences (including similar health challenges) to build social connections. These should be delivered through a diverse range of sufficiently accessible formats (e.g. a mixture of in-person and online), as well as financially accessible and be widely advertised on social media and within healthcare and educational settings.

Educational support and reasonable adjustments

Finding

Health-related challenges in education settings were a key source of feelings of loneliness. In particular, school absences were felt to limit opportunities to build friendships at an important life stage. While some participants reported how reasonable adjustments, such as reduced timetables and the provision of a support worker, and supportive staff helped them to attend more often, other participants did not receive such support, and were further excluded from inaccessible school trips, or faced disciplinary action when a cognitive disability was treated as a behavioural issue.

Recommendation

Support education providers to improve accessibility through reasonable adjustment measures, staff training, and initiatives to help young people increase attendance to provide greater opportunities to build social connections and reduce loneliness. This should take a tailored approach, recognising the individual and disability-specific needs of young disabled people.

Volunteering, employment, and skills

Finding

Work and volunteering provided young disabled people with opportunities to meet new people that they otherwise would not interact with, as well as build skills and confidence to build social connections. In addition to reasonable adjustments to support accessibility, participants cited the importance of supportive managers in making them feel comfortable and able to fit in at work, through understanding and accommodating their disability. However, young disabled people also reported a lack of suitable employment opportunities. This was supported by stakeholders, who also cited a lack of opportunities to build soft skills (e.g. public speaking) and a lack of support in the transition from education settings to employment which, in turn, impacted young disabled people’s employability and opportunities for social connection.

Recommendation

Encourage employers and VCSE organisations to develop and provide accessible work / volunteering opportunities. These should take a flexible approach to supporting young disabled people into work, which will provide them with opportunities to build social connections, as well as supporting their transition from education to work.

Stigma and the cyclical relationship between disability and loneliness

Finding

Young people experienced disability-related stigmatising attitudes, such as people making assumptions about their health, not believing they were disabled and experiences of bullying. These experiences had a lasting impact on young disabled people forming new connections, due to low trust, fears that they would face more negativity, and low self-esteem. In the absence of directly experienced social stigma, young disabled people expressed how perceived stigma (i.e. how they think others perceive them) still acted as a barrier to forming social connections and reducing loneliness. A cyclical relationship between disability, social connection and loneliness was also observed. The impacts of disability restricted opportunities for social connection and contributed to loneliness. In turn, this had a detrimental effect on health management (primarily due to mental health impacts) and led some participants to experience anger and frustration towards themselves or their disability.

Recommendation

Keep raising awareness (e.g. through campaigns and training) of different disabilities to improve understanding and decrease instances of stigma and discrimination that contribute to loneliness for young disabled people.

Formal and informal support

Finding

Some participants described receiving formal support (e.g. through education, volunteering, or extra-curricular activities) to help build social connections or reduce loneliness, with stakeholders commenting that such support is most helpful when tailored to the individual and takes a flexible and holistic approach, including elements of co-production. In addition, informal support (e.g. from friends and family) was often provided by family and friends, which was considered most helpful when offered by those who had a deeper understanding of the participants health condition.

At present, support for young disabled people does acknowledge that different age groups have disparate needs. However, this support is not always aligned with transitional periods in a young persons’ life, such as childhood to pre-teen, teenage to young adult and transition from full time education to employment.

Recommendation

Co-production should be an essential element of any intervention to reduce loneliness for young people with disabilities. This could foster empowerment, increase self-esteem and confidence, and highlight particular needs that project designers may not have initially considered. Any support offered should also take a flexible, tailored and holistic approach.

Support for young adults (18 to 24) should be aligned with and form a logical continuation of previous forms of statutory support they may have received. This would make it easier for people in this age group to know what support is available and what support they need to enable a successful transition to employment, which would ultimately boost opportunities for social connection and reduce loneliness.

Further research is required into the types and intensity of support available to young people with disabilities focused on key life transition periods, particularly the transition from education to employment. Moreover, further research is required to understand loneliness among specific disability groups in relation to different life stages.

Executive Summary

This report presents findings from a research project that explored young disabled people’s (aged 16-24) experience of building social connections and loneliness. Previous research has evidenced that long-term feelings of loneliness are associated with higher mortality rates and poorer physical health outcomes. ^{[footnote 3]} Furthermore, it has been identified that young people and disabled people are both at disproportionate risk of experiencing loneliness. However, more research is needed to understand how those with protected characteristics, including a disability, experience loneliness. To address this, DCMS commissioned NatCen and RSM UK Consulting to conduct research with young disabled people (both those experiencing loneliness and those not) and with individuals working at organisations that support young disabled people.

Key Findings

How young disabled people build social connections (both online and in person)

• Online formats – primarily online messaging platforms and social media – were used to meet new people and to maintain relationships with people met in-person. Online communication was reported to accommodate people with physical disabilities for whom leaving the house could be difficult. Additionally, some people with visible disabilities tended to feel more comfortable interacting online. For people with communication challenges, online interaction gave more control of the way they came across through the ability to edit or delete messages. Online communication also enabled some young disabled people to form specific connections that were not otherwise available to them. This included connecting with those with similar health challenges or joining other online communities that were not available to them in-person (e.g. young LGBTQ+ people).

• Some participants preferred to connect with people in person. For instance, some neurodivergent participants struggled to communicate digitally, while others found it difficult to reply to messages and so preferred in-person connection. Other reasons for preferring to connect in-person included feeling that in-person connections were of higher quality, and safety concerns around meeting people online (where you cannot always be sure of their identity).   

Factors that cause or exacerbate experiences of loneliness among young disabled people

• Health-related challenges limited some young disabled peoples’ opportunities to build social connections. Across disability types, health-related educational absences (e.g. school, college, and university) were reported to significantly limit opportunities to build friendships. For others, their disability prevented them from leaving the home to spend time with existing friends and maintain their social connections. This contributed to feelings of loneliness which were exacerbated when comparing friendships to those of non-disabled peers (e.g. as seen through social media), who were seen to engage in inaccessible activities and build closer connections in doing so.    

•   Feelings of loneliness among young disabled people were also caused by feeling different to or misunderstood by peers due to their disability. This included peers not understanding their health condition or being unable to share common experiences (e.g. periods of hospitalisation). Some also reported feeling misunderstood when communicating with peers, for example due to neurodiversity or deafness. For some, these feelings of loneliness were exacerbated by guilt linked to their disability, for example feeling responsible for friendships ending when their disability made it harder for them to see people.   

Impacts of loneliness on young disabled people

•   The reported impacts of loneliness were wide-reaching and included poor mental health, and decreased confidence, motivation, and opportunities for social connection. Some young disabled people reported increased feelings of depression, general anxiety, and social anxiety due to loneliness, which could contribute to worsening overall health, or decreased motivation. This made it harder for participants to form new social connections through increased challenges in managing their disability or interacting with others.

•   A cyclical relationship between disability, social connection and loneliness was observed. The impacts of disability restricted opportunities for social connection and contributed to loneliness. In turn, this had a detrimental effect on health management (primarily due to mental health impacts) and led some participants to experience anger and frustration towards themselves or their disability. This caused feelings of self-doubt and reduced social confidence. These impacts further limited opportunities for social connection and exacerbated loneliness by contributing to increased social isolation.

Facilitators that support young disabled people to reduce / manage loneliness and build social connections

•   Educational environments (where accessible and supportive) were reported to facilitate social connection. Reasonable adjustments to improve accessibility and create a supportive environment led to increased attendance and opportunities to connect with peers. These adjustments included reduced timetables, providing a support worker, and meeting physical accessibility needs (e.g. having lifts). Teachers and sports coaches who accommodated health-related needs were reported to increase opportunities for social connection by making adaptations that enabled young disabled people to participate fully in sports and education.

•   Work and volunteering (where accessible and supportive) provided opportunities to meet new people, practise social skills and build confidence, which were all considered important for reducing loneliness. Accessible volunteering was considered particularly helpful for some (e.g. to meet like-minded people, build confidence, and improve social skills) and bridged the gap to other life stages, such as paid work. Accessible work and volunteering were also considered a unique opportunity to form connections with those that young people might not otherwise meet, such as older people or those with shared values.

•   Accessible extra-curricular activities provided opportunities for young disabled people to regularly see the same people and / or meet others with similar experiences or interests – both of which were considered key facilitators to building social connections. This included youth groups for school age participants (viewed as “safe spaces” by some), sports clubs, arts clubs and disability support groups.

•   Other formal support that helped build social connections or reduce loneliness included advice and support (including mental health support in the form of counselling and therapy) from charities, the NHS, social workers, support workers in places of education, private therapists, and professional mentoring. Support was considered most helpful where it was tailored to the individual and took a flexible approach. Including elements of co-production – where organisations seek input from young disabled people and their parents on how/where services should be designed and delivered – was suggested as a key facilitator by stakeholders.    

•   Informal support was often provided by family and friends. This included support in building and maintaining social connections (e.g. friends making adaptations to social plans or knowing what to do if their health declined) and emotional support when feeling lonely (e.g. to “get things off their chest” or reaching out when they felt down). This support was considered most helpful when offered by those who had a deeper understanding of the participant’s health condition, particularly those who had faced similar challenges.

Barriers young people experience when trying to reduce / manage loneliness and build social connections

•   Stigmatising attitudes to disabilities impacted participants’ confidence and ability to trust others. This contributed to social isolation and made it difficult to form connections with others and take steps to reduce feelings of loneliness.    

•   The impact of disabilities made it difficult for young people to build social connections. This included physical isolation by not being able to leave the home, being unable to take part in social activities (such as sports), and communication challenges that inhibited participants’ ability to easily build relationships.

•   A number of accessibility barriers were reported to restrict opportunities to build social connections and reduce loneliness. These included a lack of accessible employment opportunities or opportunities to increase employability, and limited access to post-18 support to manage life stage transitions (e.g. school to university or school to work). Education-related barriers included reduced attendance at school / college / university due to a changing health condition and a lack of the necessary adjustments and support, being excluded from inaccessible school trips, or cognitive disabilities being viewed as behavioural issues which led to disciplinary action.

•   Some young disabled people faced barriers to accessing formal support that they believed would help them to reduce feelings of loneliness, including long waiting lists, minimal awareness of support available, or existing services not catering to their needs.

Recommendations for how loneliness can be reduced for young disabled people

1. Support the VCSE sector and local government to increase provision of groups for those with common interests and experiences (including similar health challenges) to build social connections. These should be delivered through a diverse range of sufficiently accessible formats (e.g. a mixture of in-person and online), as well as financially accessible and be widely advertised on social media and within healthcare and educational settings.  

2. Support education providers to improve accessibility through reasonable adjustment measures, staff training, and initiatives to help young people increase attendance to provide greater opportunities to build social connections and reduce loneliness. This should take a tailored approach, recognising the individual and disability-specific needs of young disabled people.     

3. Encourage employers and VCSE organisations to develop and provide accessible work / volunteering opportunities. These should take a flexible approach to supporting young disabled people into work, which will provide them with opportunities to build social connections, as well as supporting their transition from education to work.  

4. Keep raising awareness (e.g. through campaigns and training) of different disabilities to improve understanding and decrease instances of stigma and discrimination that contribute to loneliness for young disabled people.  

5. Co-production should be an essential element of any intervention to reduce loneliness for young people with disabilities. This could foster empowerment, increase self-esteem and confidence, and highlight particular needs that project designers may not have initially considered. Any support offered should also take a flexible, tailored and holistic approach.  

6. Support for young adults (18 to 24) should be aligned with and form a logical continuation of previous forms of statutory support they may have received. This would make it easier for people in this age group to know what support is available and what support they need to enable a successful transition to employment, which would ultimately boost opportunities for social connection and reduce loneliness.  

7. Further research is required into the types and intensity of support available to young people with disabilities focused on key life transition periods, particularly the transition from education to employment. Moreover, further research is required to understand loneliness among specific disability groups in relation to different life stages.

1. Introduction and Methods

Background

Long-term feelings of loneliness have been shown to be associated with higher rates of mortality and poorer physical health outcomes. ^{[footnote 4]} Loneliness has been found to predict the onset of severe Common Mental Disorders (CMD), such as depression and anxiety. ^{[footnote 5] [footnote 6]} We know that young people aged 16-24 are disproportionately at risk of loneliness. ^{[footnote 7]} Furthermore, through analysis of the Community Life Survey (CLS) and Understanding Society, previous research has identified that those living with a disability or long-term health condition are nearly three times more likely to experience chronic loneliness.

The government’s loneliness strategy sets out the approach to tackling loneliness in England, including commitments to break the link between poor health, disability and experiences of loneliness. However, there is an evidence gap around how people with certain protected characteristics such as a disability experience loneliness, particularly for young people. This has implications for wider government policies pertaining to digital inclusion, higher education, the Disability Action Plan, and extracurricular activities.

The research uses the following key definitions:

•   Disabled: Someone is disabled under the Equality Act 2010 if they have a physical or mental health condition that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. This definition encompasses a wide range of health conditions.

•   Loneliness: A subjective, unwelcome feeling of lack or loss of companionship. It happens when we have a mismatch between the quantity and quality of social relationships that we have, and those that we want. ^{[footnote 8]}

•   Chronic Loneliness: Loneliness that is experienced often or always. ^{[footnote 9]}

•   Young people: This research focussed on you people aged 16-24.

Research aims

To further develop the evidence-base around young disabled people’s experiences of loneliness and building social connections, DCMS commissioned NatCen and RSM UK Consulting to conduct this research to answer the following questions:

1. How do young disabled people build social connections (both online and in person)?

2. What factors cause or exacerbate experiences of loneliness among young disabled people?

3. What types of impacts does loneliness have on young disabled people?

4. What facilitators support young disabled people to reduce / manage loneliness and build social connections?

• What is the role of paid work, further education and higher education in reducing loneliness and building social connection?

• What is the role of wider formal and informal activities in reducing loneliness and building social connection?

5. What barriers do young disabled people experience when trying to reduce / manage loneliness and build social connections?

6. How can loneliness be reduced for young disabled people?

Methods and participants

To answer the above questions, this research consisted of three work strands: interviews with stakeholders; in-depth interviews with young disabled people with recent experience of loneliness; and in-depth interviews with young disabled people with no recent experience of loneliness. This section provides a high-level description of the applied methods; for more details of the sample, methodological approach, and ethical considerations, please see appendix A.

Stakeholder interviews  

Twelve interviews were conducted with stakeholders with professional experience in supporting young disabled people experiencing loneliness and / or working for organisations that help disabled people to build social connections. Some of the professional stakeholders we interviewed worked solely with disabled people, while others worked more generally with young people (both those with disabilities and those without). The roles of interviewees included policy, public affairs and research staff at charities and voluntary organisations, directors and project managers at social enterprises, academics, and disability support staff in places of education. These interviews provided expert insights into interventions and strategies to prevent and / or address loneliness among young people with disabilities or health conditions. Full details of the sample are included in appendix A. Throughout the report, these interviewees are referred to as “stakeholders”.

Interviews with young disabled people experiencing loneliness  

Forty-eight interviews were conducted with young disabled people. Thirty-six of these were with young disabled people who reported regular and recent feelings of loneliness (referred to in the report as “group one participants” or “young disabled people experiencing loneliness”).

Interviewing with young disabled people with no recent experience of loneliness  

Twelve interviews were conducted with young disabled people who did not have any recent (within the last 12 months) experience of loneliness (referred to in the report as “group two participants” or “young disabled people with no recent experience of loneliness”).

The sample for both group one and group two participants included young people with a range of different disabilities and health conditions, including those with physical, sensory, or mental / cognitive disabilities and those with multiple disabilities. Sampling on this basis – as well as sampling by age and employment / education status – ensured that we interviewed people with a broad range of experiences. For further details on the sampling approach please refer to appendix A.

The young people with disabilities and health conditions that we interviewed are referred to throughout the report as “young disabled people” or “participants”.

Analysis and interpretation of findings  

Interviews were transcribed and analysed using the Framework approach. ^{[footnote 10]}  This grouped information around each research question, enabling the research team to assess the relevant evidence. Findings have been integrated across the work strands and are presented thematically.

This report does not provide numerical findings, since qualitative research cannot support numerical analysis. Instead, the qualitative findings provide in-depth insights into the diverse range of views and experiences of participants and direct quotes are used to illustrate these. Experiences of interviewees were informed by a range of factors, including demographics and life circumstances, which culminated in unique experiences for each individual. While this report comments on the impact of demographics and wider factors, the focus here is on the ways in which demographics impact experiences. This report does not make claims about whether certain experiences are more or less common in different groups.     

Possible limitations of the sample for qualitative interviews  

This project aimed to capture experiences from young people with a range of disabilities, and therefore a group of individuals with varying experiences was recruited. Factors considered included age, disability type, and education / employment status. For professional stakeholders, job role and organisation were considered. However, this project did not explore the impact of specific disabilities and how these may uniquely affect people in relation to loneliness. It may also be the case that potential participants with different health challenges would have provided a different perspective to those interviewed. Additionally, experiences of loneliness and disability are highly intersectional, in that they are likely to be impacted by other facets of one’s life experience or identity (e.g. gender, sexual orientation, ethnicity, or socio-economic status). While we have explored intersectional experiences discussed by interview participants, some experiences will not have been covered by our sample.

Sensitive topic  

The sensitive subjects covered during the qualitative interviews may have caused some participants to self-censor and not explain the full detail of their experiences. We attempted to lessen the impact of this by having experienced researchers conduct the interviews, having participant-led interviews, and assuring the participants of their right to withdraw at any time prior to, during, and after the interview.

Structure  

The remainder of this report is structures as follows:

• Chapter 2 explores where and how young disabled people build social connections and experience loneliness, the factors that cause or exacerbate loneliness, how this is linked to social connection, and the impacts of loneliness.

• Chapter 3 explores the barriers that young disabled people face in building and maintaining social connections and reducing loneliness.

• Chapter 4 explores what can be done to reduce loneliness, including actions taken by young people, facilitators to building social connections, and learnings from stakeholders on how organisations can reduce loneliness for young disabled people.

• Chapter 5 draws conclusions and makes recommendations focused on addressing loneliness for young disabled people.

2. Experiences and impacts of loneliness and building social connections

Key findings:

• Young disabled people had varied experiences of building social connections with the nature of their disability impacting preferences for online vs in-person communication.

• Young disabled people typically build connections in one of two ways: by repeatedly spending time with the same people in a structured environment, or by seeking out those with similar experiences to them who they could connect with on this basis.

• Having high quality relationships (defined through closeness, trust, and shared understanding) was more important that the quantity of connections in contributing to overall satisfaction with relationships.

• Young disabled people felt that their disability caused and / or exacerbated feelings of loneliness by limiting their opportunities to form social connections and by contributing to a sense that they were different to, or misunderstood by, those around them.

• The impacts of loneliness were wide-reaching, with a cyclical relationship between disability, social connection and loneliness. Impacts of disability restricted opportunities for social connection, contributing to loneliness which then had a detrimental effect on managing symptoms of disability (primarily due to mental health impacts), further limiting opportunities for social connection and exacerbating loneliness. 

The young disabled people interviewed, both those experiencing loneliness and those with no recent experience of loneliness, had varied experiences of building and maintaining social connections. Some participants felt highly socially connected, with lots of people in their life that they saw on a regular basis, while others were comparatively socially isolated. This chapter explores participants’ experiences of forming social connections, including their satisfaction with their social connections and how this was linked to experiences of loneliness, and the impact that loneliness had on young people.

How young disabled people build social connections

Where young people build social connections  

The young disabled people interviewed had built social connections in a variety of contexts, including through: church; dating apps; extra-curricular activities, including sports and arts clubs; friends of friends or family members; healthcare settings; holidays; living in shared accommodation; organised in-person activities or online communities for those with similar health challenges; paid work; school, further and higher education; volunteering; and youth groups.

Participants’ experiences of attempting to build social connections broadly fell into two categories. The first was forming connections through spending extended time with the same people in a structured environment. This included connecting with classmates at school, or through youth groups and sports clubs that met regularly. Secondly, participants built connections with others by deliberately seeking out people with similar interests or life experiences, for example through social media, who they could connect with on this basis.

Young disabled people had met both close friends and acquaintances in the environments described above and valued both forms of social connection. Participants reported varying levels of social connection, in terms of both quality, quantity, and perceived success in building friendships, reflecting that at times their disability made it harder to meet new people (these barriers are explored further in chapter 3). Participants recalled changes to their social connections over time, including changes to how successful their attempts to make friends were. This included both positive and negative changes, with some finding it easier to build social connections as they got older, while others faced new challenges to building and maintaining social connections at new life stages. These changes were often related to transitional life stages, such as leaving school, beginning further education or paid work, moving to a new area, or changes to the participants’ health. Whether social interactions took place online or in-person also impacted the participants’ experiences in building social connections.

Online vs in-person connection  

Young disabled people had experience of building and maintaining social connections online and in person, with preferences often related to their disability or health condition. Participants’ experiences of online connection included meeting new people online and forming friendships with them or using online communication (e.g. through social media) to stay connected to people that they also saw in person. Stakeholders we spoke to had experience of delivering online and in-person services to young disabled people. The cited benefits to online connection included being better able to reach more isolated groups of young disabled people, such as those living in rural areas or those living with anxiety. Furthermore, stakeholders commented that online social groups can remove some accessibility barriers and allow young disabled people to interact with a wider range of people.

Some young disabled people preferred to connect with others online, as this better accommodated their health needs. For example, online interactions enabled young disabled people to maintain existing friendships when their disability or health condition made leaving the house difficult. Furthermore, some young people with visible disabilities who had received negative comments about the way they looked felt more comfortable communicating with people online, reducing worries about being looked at or judged.  

I get anxious and embarrassed about the problems that I have, so I find it easier to talk to people online because they can’t judge me, so I’ve got that screen to hide behind.

-Young disabled person experiencing loneliness

Some participants with communication challenges worried about being misunderstood during in-person interactions. They therefore preferred online interaction as it allowed time to think about what to write and the ability to edit, or even delete, messages after sending. This gave participants more control around how they came across to people, lowering the risk of being misunderstood, which could prevent them from forming a connection. Furthermore, participants reported how in-person interactions could build on an existing online connection, as they felt more comfortable and less anxious talking to someone in person having interacted with them online first.

It was easier to talk to them by message because it wasn’t face-to-face at the time. Then when we went back into school I was able to know how to talk to them, how to match my style of dialogue to theirs. It was just easier to talk to them because I knew they knew me in a way.

– Young disabled person experiencing loneliness

Online communication also enabled some young disabled people to form specific connections that were not otherwise available to them. Young disabled people sought out those who had similar interests or who they could connect with based on shared experiences online, while others used online dating apps to find a romantic partner. For example, participants described finding an online community (e.g. a Facebook group for young LGBTQ+ people) in the absence of a nearby in-person community. Some participants with recent experience of loneliness sought online connections with people who had similar health challenges to them. Young disabled people explained how social media allowed them to make friends with people with the same disability, for example by creating a TikTok account dedicated to how they manage their disability, when they had not met anyone in person with the same experiences. Others chose not to form new connections online but felt that social media was key to maintaining existing connections. This was particularly the case for those who preferred to make friends in-person, but whose disability made it harder for them to regularly see their friends.

Conversely, other young disabled people preferred to connect with people in person rather than online. For some this was related to their health condition. For example, some participants with dyslexia struggled to communicate digitally, while some participants with ADHD struggled to reply to messages and so preferred in-person connection. Others reported more general reasons for preferring to connect with people in person. Participants mentioned feeling increased connection and trust when meeting face-to-face, due to being able to read body language, facial expressions, and tone. Safety concerns around meeting people online were also highlighted, with participants noting uncertainty around who they could be talking to online.

I struggle with messaging people, and in this day and age, it’s quite important. So communicating over text, that stops me, and then that makes people fall out with me because they think, well, she’s just ignoring me, but it’s just too much… by the time I’ve done one message, I’m already drained. So that affects my relationships because I can’t communicate that way.

– Young disabled person experiencing loneliness

Some stakeholders cited drawbacks to delivering services online, with online-only services potentially isolating young people further due to limited access to digital technology or video conferencing equipment. Others suggested that some social skills can only be developed in person and that online communication is a poor substitute to help people with difficulty socialising. These stakeholders also suggested that socialising and taking part in activities in person is more likely to result in sustained relationships and increased feelings of belonging.

[Online service provision] helps in terms of low confidence and mental health and anxiety, but there’s no substitute for face-to-face interactions when it comes to personal and social development. Building a young person’s confidence, the way that they use their body, the way that they use their voice, eye contact…is so much more possible when you’re in the room with them.

– Professional stakeholder

Awareness of opportunities to build social connections  

Some young disabled people were aware of other opportunities to make connections that they were not exploring at the time of interview. Participants became aware of these opportunities through word of mouth, being signposted by schools or support organisations, or having previously been involved with the activity. These opportunities included university societies, sports teams and online or in-person groups for people with similar health challenges. Some participants chose not to access these opportunities due to a lack of time or feeling that they were out of their “comfort zone”. Some young disabled people experiencing loneliness were planning on taking up future opportunities either when their health improved (for those who are currently not well enough to attend school/college or play sports) or during a new life stage, such as attending university or beginning work. Young disabled people who were not currently experiencing loneliness and were aware of opportunities available to meet new people described not taking these up due to being satisfied with their current level of social connection.

Other participants (both those currently experiencing loneliness and those not) were less aware of additional opportunities to form social connections, reflecting that they “would not know where to start” when trying to meet new people. Among some participants there was a sense that these opportunities were poorly advertised and that they had to seek out information themselves. Although some young disabled people did not personally know how to build connections online – including with people experiencing similar health challenges or with similar interests to them – they were aware that people do make friends this way. While some participants were aware of available opportunities for disabled people to connect, they felt that existing opportunities were unsuitable for someone of their age or situation. Some felt that local services targeted at young disabled people were designed for individuals with a higher level of need or aimed at younger children, rather than teenagers.

Satisfaction with existing relationships  

Young disabled people described different levels of satisfaction with their existing social connections and explained how this contributed to feelings of loneliness. When explaining the factors that contributed to satisfaction with social connections, participants expressed that, overall, quality was more important than the quantity of social connections. Young disabled people described a ‘good’ relationship as consisting of the following attributes: trust, respect, support, shared interests or experiences, mutual understanding, honesty, and open communication. Where participants were dissatisfied with their existing social connections, this was sometimes due to their relationships not meeting this definition. Dissatisfaction arose – particularly for those who were experiencing loneliness – where they did not have these ‘good’ relationships or frequent interactions with friends.

Mutual respect and honesty. I think that’s really important because I think being able to share things with each other is massively important… communication I think is very important… being able to have a laugh with each other.

– Young disabled person experiencing loneliness

Participants described having strong connections with their partners, family members, or in-laws. However, some participants experiencing loneliness wanted their friendships, such as those formed at school or university, to be stronger or deeper in terms of the qualities outlined above. This included a desire to have more open and honest conversations with their friends about disability-related challenges, as they believed this would enable deeper understanding and stronger connection. Having shared experiences, understanding (e.g. of health challenges), or interests was considered important for having high quality social connections and facilitated building connections (explored further in chapter 4). Participants experiencing loneliness expressed that they would like to meet more people with the same disability or health condition, as this would contribute to closer friendships and increased overall satisfaction with their social connections.    

Among those who emphasised that quality of relationships was more important than quantity, some reported that this was because having more friends led to increased challenges. Where a participant’s health condition or disability made social interactions difficult, for instance due to communication challenges stemming from autism, having fewer, high-quality social connections was preferred.

I think most people would say quality rather than quantity. I’m going to say the same because I don’t think I need many friends. I would rather have the right friends than a lot of friends that are not really the right friends. I would say that’s what I do have at the moment.

– Young disabled person not currently experiencing loneliness

In other instances, participants wanted to increase their number of social connections, in part to have more people to engage in social activities with, such as attending concerts and nightclubs. Participants felt that having a greater number of social connections would increase their opportunities for socialising and reduce the time spent at home, which was felt to contribute to feelings of loneliness. This desire to increase the quantity of social connections was expressed by those who reported a high level of satisfaction with their existing relationships, as well as those who were dissatisfied.

Some young disabled people were satisfied with both the quantity and quality of their relationships but expressed dissatisfaction with their overall level of social connection when they were not able to meet or talk to their existing friends as frequently as they would like. These young disabled people desired more regular contact with their friends but faced health-related barriers that prevented this, ultimately decreasing satisfaction with their relationships and contributing to feelings of loneliness. 

Factors that cause or exacerbate loneliness for young disabled people  

Young disabled people with recent experience of loneliness expressed that these feelings were often linked to health-related challenges. Other factors, such as challenging life experiences including bereavement or discrimination, also contributed to loneliness by limiting opportunities for social connection. Participants recognised that loneliness is likely to be experienced by other young people (without disabilities or health conditions) but felt that these feelings are exacerbated by their disability.

Loneliness caused by lack of social connections due to health challenges  

Young disabled people experience many barriers to building and maintaining social connections. As a result, participants reported a mismatch between the quantity and quality of social connections that they have and those that they want, leading to feelings of isolation, disconnection and loneliness. For example, loneliness can be caused by the frequent absences from school that many young disabled people experience, limiting opportunities to form friendships with peers. Furthermore, participants with recent experience of loneliness discussed how they would like to be able to go out and spend more time with their existing friends but were restricted by their disability. These experiences of physical isolation limited opportunities to form and maintain close relationships, leading to feelings of loneliness.

You don’t have anyone, or anything to do, and you’re just sat on your own doing the same things day in, day out, seeing other people going out with their friends… You just feel completely isolated and completely left out. Yes, just that horrible feeling of isolation.

– Young disabled person experiencing loneliness  

  Young disabled people’s feelings of loneliness were exacerbated when comparing their social isolation to the comparative freedom of their (non-disabled) peers. Young disabled people felt “left out” when seeing others their age going out and meeting with friends or engaging in activities that their health condition prohibited them from doing, such as physical exercise. Due to educational absences, participants felt their non-disabled peers were able to form closer connections with classmates. This made young disabled people feel “forgotten” and brought up upsetting feelings around their friends prioritising other social connections. Loneliness also stemmed from participants being unable to form specific relationships as a result of their physical isolation, for example romantic relationships, that their peers had. Additionally, some participants with recent experience of loneliness did not have strong relationships with family members, sometimes resulting from a lack of support and understanding related to their disability. These experiences led to upsetting feelings about the quality of their relationships and exacerbated feelings of loneliness.

After the seizures started, I spent quite a while just not doing anything, and I missed my friends a lot. It was a bit horrible because I just felt stuck inside and it felt like I couldn’t do anything about it… I also felt guilty within myself even though I couldn’t really help it.

– Young disabled person experiencing loneliness    

Lack of social connections did not always result in loneliness. Some participants from both group one (those experiencing loneliness) and group two (those not experiencing loneliness) highlighted a difference between loneliness, which was associated with being negative and involuntary, and being alone, which was described as voluntary and positive. These young disabled people were satisfied with their existing relationships and chose to prioritise spending time alone over seeking out increased social connection, describing this time as “peaceful”, whereas having a large friendship group could cause challenges related to participants’ disabilities or health conditions.

Loneliness caused by feeling disconnected because of health challenges  

Young disabled people in group one also felt lonely due to feeling fundamentally different from their peers, which could prevent them from forming the kinds of relationships they desired. While some participants reported having regular contact with close friends, they also reported feeling that their health needs were not recognised or misunderstood, or that none of their peers were like them, which made them feel disconnected. Having shared experiences was considered important to having good relationships. Where participants had experiences their friends could not relate to, such as periods of hospitalisation, they felt less able to connect with them which caused feelings of loneliness. Some participants described this as being surrounded by others, but still feeling “completely alone”.

When I went into hospital, that was the loneliest I’ve ever felt. I feel like feeling lonely and isolated is just one of the worst feelings, because it’s like you’ve got so many people around, but you don’t want to engage or anything. Having people around but still feeling lonely is a really bad feeling…I didn’t feel like anyone really understood what I was actually feeling. I feel like it just made me feel really alone within myself”.

– Young disabled person experiencing loneliness

Additionally, communication difficulties related to participants’ disabilities led to disconnection from others and feelings of loneliness. Feelings of disconnection were exacerbated when participants felt that they had misinterpreted conversations with friends, caused by misunderstanding social cues as a result of neurodivergence or being unable to hear others due to deafness.

I feel disconnected with people due to the way I interpret things and that’s to do with my autism. I feel disconnected with people because I can’t go and play football or because I can’t accept big social situations, so I miss out on them”.

– Young disabled person experiencing loneliness

In some instances, participants experienced feelings of guilt around their disability or health condition, which exacerbated feelings of loneliness or isolation. For example, feeling uncomfortable that their partner had to provide support with daily activities from a young age and therefore sacrifice time spent with friends. Others felt responsible for their friendships ending when their disability made it harder for them to see people. This guilt caused some young disabled people to think negatively about themselves and to isolate themselves from others, which further exacerbated feelings of loneliness.

Impacts of loneliness

Young disabled people with recent experience of loneliness discussed the impact that loneliness had on their mental health, confidence, motivation, and opportunities for social connection. Participants reported increased feelings of depression and anxiety due to loneliness, which contributed to a worsening of overall health. At times, this worsened mental health made it harder for participants to manage their disability, and decreased their motivation to leave the house, attend college / university, and see their friends. Feelings of loneliness were also reported to increase social anxiety, making it harder for participants to form new social connections, which further exacerbated loneliness and created a negative cycle where their mental health declined. The impacts of this were wide-reaching, with some participants expressing that worsening mental health caused by feelings of loneliness made it more difficult for them to eat regular meals. Furthermore, stakeholders that work with young people suggested that young people’s mental health and wellbeing is most at risk of being adversely impacted by loneliness. They described a “spiral effect” whereby a young person might struggle with self-esteem and fear how they might be perceived by others due to their disability which can lead to withdrawing from social activities. Stakeholders reflected that this affected neurodivergent young people more than neurotypical young people.

If you don’t have that support, you’re going to struggle to get work or go into school. The more you’re not going in, the worse it will get. The loneliness increases because you can’t go in. It’s just that kind of cycle.

– Professional stakeholder

Experiences of loneliness had a further impact on opportunities for social connection. Some participants isolated themselves due to feelings of loneliness, as well as resulting feelings of anxiety that their friends were not prioritising spending time with them. For some, this manifested as reduced motivation to attend school, university or work, which resulted in fewer opportunities to connect with classmates and colleagues. This led to increased social isolation, while having a further negative impact on academic or professional performance. These points illustrate the cyclical relationship between loneliness, disability and social connection. Disability can limit opportunities for social connection that can contribute to experiences of loneliness, which, in turn, can worsen health and further restrict opportunities for connection that exacerbates loneliness. This supports previous research findings that highlight the cyclical and bidirectional relationship between loneliness and mental health.

[When I feel lonely] it makes me more anxious to hang out with people, and it probably makes me more likely to avoid it - which is like a vicious cycle, I guess, because then I feel more isolated.

– Young disabled person experiencing loneliness

Loneliness caused by disability and health challenges led some participants to experience anger and frustration towards themselves or their disability. For example, participants discussed built-up anger because they could not join in with their peers. These feelings of anger and loneliness led to self-doubt and a lack of confidence in social situations, which further exacerbated feelings of loneliness by contributing to a lack of social connection. For example, loneliness resulting from a lack of social interactions due to disability-related barriers led to feelings of “rejection”. In turn, this led to feelings of insecurity and had an impact on participants’ confidence in social situations, making it more difficult for them to take action to address loneliness.

3. Barriers to building social connections and reducing loneliness

Key findings:

• Young disabled people faced actual, as well as perceived, negative attitudes and stigma due to their disability which impacted their confidence, trust in others, and contributed to feelings of isolation. This made it harder to form connections with others and take steps to reduce feelings of loneliness.

• The impacts of disability made it harder to build social connections by physically isolating young people or through communication challenges that inhibit their ability to easily build relationships.

• Young disabled people faced accessibility barriers in public spaces and places of work and education. This, alongside a lack of tailored support, reduced attendance at school or work which was detrimental to creating lasting connections and reducing loneliness.

• Young disabled people faced barriers to accessing formal support that they believed would help them to reduce feelings of loneliness, including long waiting lists, minimal awareness of support available, or existing services not catering to their needs.

This chapter explores the barriers experienced by participants in building and maintaining social connections and managing and reducing loneliness. Many barriers experienced related to how the individual’s health impacted their daily life and how their disability was treated or accommodated by others. Barriers unrelated to health – such as a lack of time or access to transport – were generally viewed as less impactful on building / maintaining social connections and reducing loneliness.

Stigmatising attitudes to disabilities and long-term health conditions  

Experienced / actual stigma ^{[footnote 11]}

Young disabled people recalled experiences of being judged or treated differently because of their disability or health condition. These experiences included others making incorrect assumptions about their health, not believing they were disabled, and experiences of bullying. In some instances, views expressed by peers and potential friends, as well as by medical and education professionals and family members, were viewed as stigmatising.

I definitely had some really difficult friends in that time who didn’t believe I was ill, or would be like, ‘Oh, you’re just so lucky you don’t get to come in [to school],’ and would just make really cutting remarks… I still find it really difficult.

– Young disabled person experiencing loneliness

Stigma vs. misunderstanding

In other cases, participants felt that misunderstanding of different disabilities (rather than stigma) drove the negative comments. Judgement received with malicious intent was perceived to be uncommon. For example, young disabled people had experience of teachers not fully understanding their health needs and not taking their health condition seriously, resulting in adjustments and support not being offered.  As a result, needs went unmet or young disabled people were made to feel that they were “attention seeking”. Furthermore, some felt that there was less awareness for less common or non-visible disabilities, resulting in less understanding.

It’s not that they’re discriminating; it’s just that it’s really misunderstood so that can be a bit difficult. It can make me feel like I’m almost attention seeking somehow, even though obviously it’s out of my control.

– Young disabled person experiencing loneliness

Stigma attached to visible disabilities

It was generally felt that more negativity was directed towards those with visible disabilities, due to the fact they were more noticeable rather than there being greater acceptance of non-visible conditions. This is illustrated by one participant who used to use a wheelchair when living with chronic pain. They experienced negative comments from classmates when using a wheelchair, which they attributed to its visibility making them an “easy target” for bullying. Another participant noticed that when their cochlear implant ^{[footnote 12]} was visible, people were less likely to approach them than when they were covered, highlighting how having a visible disability can act as a barrier to building social connections.

Stigma in society

Stakeholders suggested that while the stigma attached to disability is gradually changing, negative attitudes still exist and a reduction in stigma does not always mean that disabilities are widely accepted. This was felt to be particularly true in education settings, which some stakeholders perceived as having limited understanding of conditions such as autism. Some young disabled people felt that there is now generally greater understanding and awareness of different health challenges. Participants also commented that as people get older they become more aware and understanding, and so reported facing fewer negative attitudes from their peers as they reached adulthood.

Perceived stigma ^{[footnote 13]}

Where young disabled people were not knowingly treated differently, a perception or anticipation of stigmatising views still acted as a barrier to forming social connections and reducing loneliness. Neurodivergent young people explained how they sometimes overthought social interactions, leading them to conclude that others thought negatively of them, even if at the time they felt positive about the interaction. Participants with anxiety and depression also described a pattern of negative thinking, questioning whether the people in their life truly liked them. This led participants to feel that others would not want to be friends with them and so were reluctant to build new connections.

It’s made me a lot more anxious to go out into the world and actually make more friends or make an effort to talk to people because I don’t know how they’re going to react now from all my negative experiences.

– Young disabled person experiencing loneliness

Impacts of stigma and misunderstanding

Overall, young disabled people with experience of loneliness reported how negative attitudes and stigma made it more challenging to trust others and have confidence that efforts to build social connections would be received positively, with some fearing that they would face more negativity (therefore experiencing anticipated stigma . This led some young disabled people to isolate themselves. Stakeholders noted how the stigma attached to having a disability can result in low self-esteem, which affects young peoples’ willingness to engage socially with others later in life. For some, this increased isolation contributed to feelings of loneliness and made it harder for them to take steps that might help manage or reduce feelings of loneliness.

Challenges in managing disabilities / health conditions

Communication challenges  

Those who experienced communication challenges described how misreading social cues, misinterpreting conversations, or being perceived as rude inhibited their ability to form new connections easily. Others described how their disability had a detrimental impact on their confidence. This resulted in feeling less able to connect with people, sometimes worrying that others would not understand them or want to be friends with them because of their health. Some participants did not experience barriers in meeting new people but found that communication challenges made it more difficult to maintain these relationships. For instance, after meeting someone in person, some dyslexic participants then struggled to continue to communicate with them remotely via digital messaging.

[I experience] a lot of communication barriers. I’ve always found myself being misunderstood really easily and not being able to read people’s facial expressions. So, I misunderstand them or they misunderstand me and it can lead to a lot of clashes with people.

– Young disabled person experiencing loneliness

Physical isolation  

Physical pain and mental health-related barriers limited young disabled people’s ability to leave the house, while the former also affected their ability to drive or take part in activities such as organised sports. While others were periodically well enough to leave the house, they were concerned about their health flaring up when out. For some, this was felt to be potentially embarrassing; for instance, those with Crohn’s disease worried about people noticing frequent bathroom use. Consequently, both fluctuations in participants’ health and fear related to potential symptoms led to isolation. This limited opportunities to see existing friends, affecting how close they felt to others and causing young disabled people to feel like an “absent friend”. Some participants reflected that they were less close to their friends than their (non-disabled) friends were to each other. In some cases, friends of young disabled people became “fed up” that they could not participate in certain activities due to their health, so the friendship deteriorated. This was often experienced following a new health diagnosis that reduced the ability to continue participating in activities such as sports. In some cases, such as when taking a new medication, participants were unable to drink alcohol and were no longer invited on nights out with friends. This particularly impacted university students and the newly employed, who felt that “drinking culture” was an essential way to bond with others and from which they were excluded.

My whole group of friends in secondary school, after I got quite unwell, no one spoke to me. As soon as I couldn’t attend social gatherings or go out and like play netball or go out and kick a ball or do frisbee in the park, I just wasn’t invited to anything.

– Young disabled person experiencing loneliness

Accessibility barriers and a lack of reasonable adjustments  

When young disabled people were well enough to leave the house and engage in activities, accessibility barriers made it harder for them to do so. Accessibility barriers reported by young disabled people and stakeholders included transport being inaccessible and difficult to navigate (both physically and due to sensory issues), and venues for socialising, such as cafes, pubs, and outdoor spaces, not meeting physical accessibility requirements, for example by not having accessible seating or public toilets. Resultantly, some young disabled people struggled to travel or use public spaces, and so missed out on opportunities to go out with friends or attend events where they might meet new people, perpetuating their experience of isolation and subsequently loneliness. Stakeholders highlighted some ways they attempt to address these barriers (for example by providing accessible transport options to encourage young disabled people to participate in their services or by providing equipment that can enhance their ability to access transport and socialise) and stressed that unmet accessibility needs present a key barrier to reducing loneliness for young disabled people.

Work related barriers  

In some cases, a lack of reasonable adjustments at work or education prevented full participation and led to young disabled people missing out on opportunities for social connection. Stakeholders highlighted that young disabled people faced accessibility barriers in places of work and barriers to accessing opportunities to increase employability. For example, stakeholders commented that there are fewer employment opportunities tailored to young disabled people, such as accessible internships, and a lack of opportunities to build soft skills like public speaking that boost employability.

Furthermore, stakeholders that work with young disabled people reported a lack of support around the transition from special education settings to employment that further impacted employability and opportunities for social connection.  Support for young disabled people in life stage transition periods was felt to be under-resourced, and it was highlighted that from 18 years old onwards eligibility for different types of support ends. Consequently, young disabled people are unable to access support that would assist them in gaining employment, reducing opportunities to build social connections with potential colleagues and form other work connections, such as with customers or clients. Stakeholders described initiatives where disability charities support people with learning disabilities to acquire paid or unpaid work, or work with employers to help young disabled people into work placements or internships. These measures were perceived as addressing some of the barriers mentioned above and facilitating a transition from full time education into employment that can increase opportunities for social connection for young disabled people, and thereby reduce loneliness.

Education-related barriers  

Young disabled people reported missing time in education (places that were felt to be key to building friendships at a young age), resulting in fewer opportunities to form connections with their peers. This was due to young disabled people’s changing health and a lack of support from school, college or university. For example, when changing health resulted in increased hospital appointments, participants missed more school, making it harder for them to form connections with classmates.

I had my close friends but… because I was in and out of school so much… I couldn’t expect them to stay being friends with me… it just slowly started getting a bit isolating, because they’d moved on, obviously. They’d made new friends.

– Young disabled person experiencing loneliness

Experiences of educational support were mixed. Where a school was not able to meet young peoples’ needs, for instance through lack of equipment provision, attendance decreased and feelings of being left out increased. Young disabled people with experience of loneliness reported being excluded from school trips – for instance due to wheelchair unfriendly activities or shortage of staff trained to help manage health conditions such as diabetes – which limited opportunities to build new or stronger connections with their classmates. In the absence of reasonable adjustments, some participants faced disciplinary action, for instance where a cognitive disability was treated as a behavioural issue. For others, a lack of reasonable adjustments meant they felt stressed in the school environment and their attendance declined, or a decision was made by the family to move schools. In these scenarios participants reported difficulty in maintaining connections, for example some found it challenging to make friends in an unfamiliar new school environment.         

Furthermore, young disabled people reported that the support they received was lacking or that there were no supportive staff members they could go to for help when struggling with their health or feelings of loneliness. For example, one participant reported feeling “infantilised” by school-provided support, whereby struggling to make friends due to a disability was conveyed as something only younger children experienced. Some participants felt that both schools and the education system more broadly were hostile to making adjustments for those with disabilities or health conditions. This led to increased absences from school and feeling disheartened, disconnected, losing trust, and a lack of care that contributed to feelings of loneliness. Similar barriers were faced by university students, who described staff being “dismissive” of their mental health issues and unwilling to provide extenuating circumstances for assignments. This led one participant to “lose hope” of successfully reaching out for help in future. 

I feel like if I had a connection with one of the teachers at college, it could help a lot more with me actually wanting to go into college. It could help me make new friends at college.

– Young disabled person experiencing loneliness

Access to and quality of support  

Young disabled people had experience of accessing formal support (e.g. through education, volunteering, and extracurricular activities) for a variety of reasons, with some finding formal support helpful in reducing loneliness. However, some young disabled people reported facing barriers to accessing or fully benefiting from support that might help them build social connections or reduce loneliness. Some participants were unaware of available support and suggested greater advertisement of services was required, such as on social media, or dissemination through schools and healthcare settings. Of those receiving support, it was felt that accessing services sooner would have improved their experiences of loneliness; however, they were not previously aware that the support existed. This included university-provided wellbeing services, which participants felt there was little awareness of. Stakeholders explained the steps they take to address this lack of awareness, suggesting that taster sessions and including pictures and videos when advertising services on social media were effective ways to spread the word and draw participants. 

Young disabled people reported being on long waiting lists, in some cases of up to three years, for therapy and mental health support. Of those receiving NHS mental health support, inconsistencies were reported, such as being “shuttled around” between therapists and receiving differing standards of care in different regions of England. Others had therapy withdrawn after reaching a limit on their personal health budget. Participants described this as causing uncertainty and “anger” when trying to access support that was important for reducing loneliness, making it harder for them to seek support from others, such as friends, due to feeling like they could no longer rely on anyone.

It upsets me more than anything that therapy is a place where you’re meant to feel safe… Being able to confide in someone about the way I’m feeling on day-to-day life is a massive thing. To have those communications cut short or to just be thrown around like you don’t matter, is awful. I think that’s another thing that subconsciously plays on my mind when I do speak to new people on a friendship level.

– Young disabled person experiencing loneliness

Some stakeholders reported that the most common barrier to reducing loneliness was low investment in social prescribing, especially for services that specifically target reducing loneliness among young disabled people. Some stakeholders described this as a structural problem that affects young disabled people at a national level. Social prescribing connects people to activities, groups, and services in their community. However, it was generally felt that there is a lack of geographically accessible services for young disabled people such as youth clubs or activities that cater for and understand their needs. Young disabled people had lived experience of these issues, reporting a lack of available services and activities in their local area for people with similar health needs or of a similar age to them. One participant felt there was a particular lack of support for teenagers, having previously accessed support as a child but no longer being able to find support that met their needs. Existing services were also not always considered to be physically or financially accessible. For instance, some young people would require free transport to attend services. While some stakeholder organisations offered free or subsidised activities and transport to address accessibility barriers, it was generally felt that there was a limited budget for accessibility adjustments. Barriers such as these limit young disabled people’s ability to meet and form connections with others, thereby increasing loneliness.

Stakeholder organisations highlighted structural barriers (i.e. policies and practices that can perpetuate the disadvantage of marginalised groups) in accessing statutory support for young disabled people as hindering their ability to build social connections. The lack of awareness of existing statutory support that young disabled people are entitled to was cited as a key barrier. Stakeholders suggested that gaps in funding for social care and changes to the ministerial role for disabilities has contributed to perceptions that disability is not a government priority. Alongside this, stakeholders noted that long waiting lists for a disability diagnosis prevents young disabled people from accessing statutory or special educational support, and activities that could facilitate social connection.

One of the big barriers [to accessing statutory support for disabilities] that we find is that young people or their families are constantly saying: ‘I’m constantly having to prove I’m disabled’…[there] needs to be more from the government and services to push employers in understanding and offering opportunities for disabled people.

– Professional stakeholder

Other barriers

Transitional life stages  

While going through transitional stages provided opportunities to expand social networks, including moving from school to university or university to work, some felt that their disability resulted in a more challenging transitional experience.  Neurodivergent participants explained how they struggled with periods of change, making transitional stages more disruptive and potentially overwhelming, which impacted their ability to form connections in new environments. Transition periods also affected the support that participants received from their informal support networks in managing feelings of loneliness. For example, some participants struggled to make close friendships when starting university and found it harder to maintain relationships with their friends from home. Group one participants also described difficulty in moving back home after university; where they were used to being “surrounded” by peers, not having this at home increased feelings of loneliness.

Friendship challenges  

Some participants described having “difficult” or “toxic” friends who did not respect or understand them which led participants to “shut down” or feel “pushed to the side”. Others had friends who were unsympathetic towards their condition and inflexible when making plans. Participants thought friends would be more understanding if they were more open about their own experiences or if their friends proactively educated themselves about their disability. Young disabled people experiencing loneliness anticipated that feeling better understood by their friends would make them feel more supported by, and connected to, them and would reduce feelings of loneliness.

Transport  

Some participants lived in rural areas with limited public transport. This resulted in difficulty accessing places where they might meet new people or see existing friends, making it harder to address feelings of loneliness. Stakeholders suggested that this is exacerbated for young disabled people by the cost-of-living crisis, explaining that many young disabled people already pay a premium for accessible transport services, meaning that rising transport costs disproportionately impact them. Stakeholders described how their organisations try to address this barrier by providing equipment to young disabled people. This can allow them to access transport and by keeping their activities free or subsidised to mitigate the “disability premium”, which disabled people face for accessible transport options that are often more expensive.

Lack of time  

Young disabled people in work or education were often busy with these commitments and had less time to dedicate to meeting new people and maintaining existing friendships. In particular, those with caring responsibilities, such as those with young children, might find it more challenging to find time to take action that would be helpful in reducing feelings of loneliness.

Challenging life experiences  

Participants reflected on several challenging life experiences that impacted their ability to build and maintain social connections. This included experiences of bereavement, being in prison, being subject to violence, having children at a young age, and experiencing discrimination and rejection due to gender identity and / or sexual orientation. These experiences contributed to some participants having “abandonment issues”, “trust issues” or “fear of rejection”. This made them “push people away” as a means of protecting themselves against being hurt or let down, leading to isolation that further exacerbated feelings of loneliness.

4. Facilitators to building social connections and reducing loneliness

Key findings:

• Steps taken to make educational environments more accessible and supportive were felt to increase attendance for young disabled people, which was considered important for reducing loneliness by providing opportunities to build social connections with peers.

• Work and volunteering provided opportunities to meet new people, practise social skills and build confidence, which were all considered important for reducing loneliness. Stakeholders felt that steps to increase accessibility of employment were the most important interventions to reduce loneliness for young disabled people.

• Opportunities to see people regularly or meet others with similar experiences or interests (including similar disabilities) was considered key to increasing feelings of connection and reducing loneliness. Extra-curricular activities such as youth clubs, sports / arts clubs and disability support groups were seen as key facilitators to this.

• Formal support to help build social connection or reduce loneliness was found to be most helpful when it is tailored to the individual and takes a flexible approach. Stakeholders suggested that including elements of co-production was a key facilitator to delivering successful interventions to reduce loneliness.

• Participants received support in managing feelings of loneliness through informal support networks of family and friends. This included support in building and maintaining social connections, and emotional support when feeling lonely. Support was considered most helpful when offered by those who had a deeper understanding of the participants health condition.

The young disabled people that we spoke to reported several factors, often related to the barriers described above, that made it easier for them to form connections with new people, to maintain existing connections and to reduce or manage feelings of loneliness. Facilitators were both external from the participant (formal and informal support networks) and internal (personal tools used to manage and reduce loneliness). Due to the impact that limited social connection can have on feelings of loneliness, reducing loneliness to a large extent involves removing barriers to building and maintaining social connections. However, addressing social connection alone is not sufficient to reduce loneliness. Some participants reflected that they do not need more friends to counter loneliness, but that they require more support from their existing connections or more formal support to better manage experiences of loneliness.

Education  

Young disabled people described how their health needs being understood and accommodated for (including in education, employment or in personal relationships) made it easier for them to build and maintain social connections. Reasonable adjustments made by schools, colleges and universities supported students to attend more classes, giving them increased opportunity to connect with their peers. Such adjustments included having reduced timetables, providing a support worker, and meeting physical accessibility needs, such as having lifts. These measures also had an indirect impact on participants, as creating an accessible environment made participants feel less stressed or judged, resulting in better attendance and increased opportunities for social connection.

Just the whole set up works better [at college] … it means I’m more likely to want to go in… if it’s a lower-stress environment I’m more likely to go in. That means obviously I am seeing my friends a lot more.

– Young disabled person experiencing loneliness

Young disabled people spoke about having understanding teachers or sports coaches who made allowances for them when experiencing symptoms related to their condition. This made participants feel more included and reduced the sense that they were at odds or clashing with their teachers (which was the case for others). One participant spoke about their referral to a Special Educational Needs (SEN) school, which was more attentive to their emotional needs. Another participant reported receiving help from a staff member trained in mental health support, allowing them to “hash it out” and speak about their emotions freely. Some of the young disabled people we spoke to were not currently well enough to attend school or college, but stated they would need additional support to successfully return. Provision of this kind of support would increase attendance for some, increasing opportunities for social connection and would go some way to reduce loneliness for young disabled people.

I have a disability worker there who I’m in quite regular contact with. I have a mental health person there who I’m quite regularly in contact with. They seem pretty well equipped to deal with whatever I throw at them. I guess the biggest thing is my university accessibility and that’s spot on.

– Young disabled person experiencing loneliness

Work and volunteering  

Paid work and volunteering provided opportunities for young disabled people to meet new people, build confidence and develop their social skills. Stakeholders reflected that paid work not only provides young people with financial freedom, but also brings a sense of purpose to their day-to-day life and enables young people to have consistent interaction and build social connections with colleagues. These benefits were not confined to these environments but gave participants the opportunity to practise social interactions, resulting in greater confidence and increased ability to form new connections, leading to reduced feelings of loneliness in general. For example, participants who had worked in customer facing roles felt better able to talk to new people as a result. Stakeholders noted that accessible internship programmes are effective in getting young disabled people into paid work in the long-term and have seen a positive effect on their feelings of loneliness as a result. Without employment, stakeholders felt that young disabled people could become socially isolated and, as such, this was considered by some as the most important intervention to reduce loneliness for young disabled people. While young disabled people spoke positively of the role of work, they placed less emphasis on it being the most important facilitator to reduce loneliness, instead placing greater emphasis on educational attendance, personal relationships, and support provision.

When an individual is socially isolated, their personal and social development, and their wider skills for work and for citizenship are limited… a gap can emerge between them and their non-disabled peers.

– Professional stakeholder

The informal aspect of volunteering was considered particularly helpful for some and bridged the gap to other life stages, such as paid work. Volunteering was viewed as an opportunity to meet like-minded people, something which was considered important in building new or lasting relationships. Participants noted how volunteering for a specific cause attracts people with shared interests and values, creating a non-judgmental environment where young disabled people could become more confident and build connections. For example, one young person described how volunteering at a mental health charity allowed them to meet people who were on the same “wavelength” as them. Stakeholders also highlighted how volunteering opportunities boosted confidence, which can translate to improved social skills. For example, a ‘Community Gardens’ project provided tasks at different difficulty levels for young disabled people in a public green space, in which young disabled people helped gardeners with growing vegetables or fixing footpaths. This made them feel part of a working community and seeing the outcomes of their work improved their self-esteem.

They’ve [the organisation] helped me grow my confidence. Before I [volunteered] there, I didn’t have any confidence. I didn’t speak to people; I didn’t even say hello to people. I was very, very timid, and then I went there, and then they helped me talk to people, say hello to people, and just get on with people really.

– Young disabled person experiencing loneliness

Work and volunteering were considered a unique opportunity to form connections with those that young people otherwise would not meet, such as older people. While connections formed in these environments were not always close friendships, the connections made were felt by young people to be valuable, heightening feelings of connection and instilling confidence. At times, these work connections made participants with experience of loneliness feel “normal” after a period of social isolation, and in some cases helped them to overcome mental health challenges. Some working environments were particularly supportive and effective in reducing feelings of loneliness, for instance due to the presence of a supportive manager. Participants described managers who were understanding and willing to accommodate for, or learn about, their conditions as making them feel more comfortable and able to “fit in” better at work, reducing feelings of difference and disconnection which can contribute to loneliness.

Extra-curricular activities  

Participants noted the role of extra-curricular groups in facilitating a reduction in loneliness. Having regular opportunities to see the same people was highlighted by young people as an important facilitator in building social connections. This was why school was considered key to building friendships at a young age, but this also applied to extra-curricular activities that were attended on a regular basis, including sports clubs and youth groups. Furthermore, being able to connect with others with similar interests or life experiences was also a perceived facilitator to building strong connections quickly. School-age participants spoke positively about attending youth groups outside of school. These youth groups (often organised by charities or the NHS) were either for people with shared conditions, or for people with shared identities, such as those identifying as LGBTQ+. Participants felt that the people they met at these groups better understood their day-to-day lives compared to other friends, which created a closer bond. Other participants described these groups as “safe” places where they could work on their social anxiety without being judged. Participants with experience of loneliness who had not accessed such groups reported that they were keen to do so and thought that this could be effective in reducing their feelings of loneliness.     

Stakeholders suggested that interest-led groups, whether online or in -person, provided an opportunity for young disabled people to congregate around a common theme with like-minded people, allowing them to build confidence, meet new people, and feel productive. Young disabled people felt that this was particularly important for those who, because of their health condition, “hyper-fixate” on certain topics or have areas of special interest.

Other formal support  

Participants had mixed experiences of accessing formal support for a variety of reasons. While formal support was not usually accessed with the sole intention of helping young people to build social connections or reduce loneliness, participants described how the support they accessed was beneficial in helping them in these areas (alongside helping them with their health more broadly). While some participants had not accessed any support, others accessed one or more of the following:

• online and in-person support groups for people with the same disability organised through Child and Adolescent Mental Health Services (CAMHS), doctors, nurses and disability charities;  

• support workers at school, college, and university;  

• assistance from disability charities in accessing education, applying for welfare payments and accessing counselling;  

• therapy (private and NHS);  

• help from a social worker; and  

• professional mentoring.

Young disabled people received support from disability charities which helped them in applying for welfare payments, and signposting to other support services. For some participants, charities provided useful support when seeking a diagnosis or information on their condition, such as available medication. One participant described speaking to a charity when they did not feel they could turn to anyone else. Some participants with experience of loneliness described charities as the most useful and comprehensive supporters in terms of helping them understand how they are affected by their condition and how to manage difficult emotions, including loneliness.

Young disabled people with experience of loneliness described receiving therapy or counselling – including talking therapy and CBT through charities, privately and through the NHS – as having an important role in managing and reducing loneliness. Therapy was perceived to help participants better manage life challenges, including feelings around loneliness or social interaction, allowing them to feel more comfortable during periods of being alone and self-isolation due to “stress” or “overstimulation”. Here, participants described therapy as helping them cultivate their own company as a “safe space”. Participants also spoke about the support they received from mental health support workers who provided counselling and helped participants “open up” about their experiences of loneliness.

Furthermore, stakeholders who worked at charities highlighted how taking a flexible approach to service provision, with elements of co-production, was effective in assisting young disabled people in managing loneliness. Here, stakeholders defined co-production as working with young disabled people and their parents/carers in designing interventions. By doing so, services can be designed and delivered in the most effective way, in the right place. One example given was peer research, where young disabled people were supported to gather information on available support services from peers, before presenting recommendations for improvements to key decision-makers. Other organisations explained how they would like to incorporate more elements of co-production into their model of service design and provision in future. Co-production was felt to facilitate successful approaches to deal with loneliness, by ensuring that service delivery was best suited to participant needs, reducing the risk of project failure. 

Getting [meaningful co-production] right is where you’re going to have the most impact; getting those conversations happening, getting a community of people who are empowered to have a say, will be incredibly beneficial for society and also for the individuals involved.

– Professional stakeholder

Furthermore, stakeholders acknowledged that there is no single approach that works for reducing loneliness for young people across all types of disability. They highlighted the need for a “holistic, multi-faceted approach” to supportive interventions and stressed how operating a flexible delivery method can ensure consistency in building relationships. This also gives young disabled people autonomy in how they feel comfortable interacting, whether that be online, face-to-face or over the phone. Young disabled people emphasised how support needs to be tailored to the individual, recognising that people are impacted by their disability in many ways and will have different preferences regarding how they like to communicate. These considerations are also applicable for support provided in places of work and education, where support can be most helpful when listening to the specific needs of students and employees. Stakeholders further highlighted how a holistic approach should include addressing accessibility barriers through a combination of making reasonable adjustments so that public spaces, transport, and places of work and education are accessible for all, along with disability awareness training (informed by co-production) for those who work in or design public spaces. 

Informal support  

Young disabled people described how having friends and family members who understood their health needs, were willing to make adaptations, or had a shared experience of a similar health condition or identity, made it easier for them to maintain the relationship. Efforts made by informal connections included individuals educating themselves about the health of participants or being flexible in making social plans to meet changing health needs. This support made it easier for participants to maintain the relationship; for instance, they felt more relaxed while socialising as someone would know what to do if their health suddenly declined. Once participants had a single close supportive relationship, they found it easier to expand their social network through the existing connection. This was due to the person providing a sense of common ground with others, encouraging them to meet new people, and helping to maintain these new connections when their health made it difficult to do so.

Furthermore, parents/carers facilitated building and maintaining social connections by seeking out groups for people with the same disability and paying for their children to go on trips with others with similar health challenges. This allowed participants to have connections with those with common experiences from a young age. In addition, parents conducted research into their condition, which helped them understand the impacts of their disability and better support them if they were upset. This also helped young disabled people learn and develop better methods for managing their symptoms. In turn, young disabled people could socialise or resume parts of their routine, such as going to work or exercising, which ultimately reduced feelings of loneliness. Participants reported that having family members who were able and willing to drive them to see their friends was invaluable in allowing them to maintain friendships. This was especially true for those who could not drive themselves or easily access public transport. Receiving this kind of support also reassured participants that their friends and family genuinely cared about them.

Whenever I go places, it’s always with her, and she’s known me for long enough now, she can tell when I’m about to have a seizure. She knows enough now to be able to be sensible and be able to look after me, and she’ll call my mum if anything was to happen, or even if there was a slight worry.

– Young disabled person experiencing loneliness

Because we’ve known each other for quite a long time, we’ve both got the same friends. So because they’re his friends, and he can maintain that relationship, so can I.

– Young disabled person experiencing loneliness

Young disabled people with experience of loneliness identified acts of unsolicited and pre-emptive support through their informal network. This included friends reaching out unprompted if their behaviour was “off” or if they felt down. This reassured participants about the strength of their relationships and decreased feelings of loneliness. In other cases, friends made adjustments for participants around their condition, for example by talking up in a loud environment for participants experiencing deafness. This not only facilitated social connection, allowing participants to remain involved in conversation, but reduced the feelings of misunderstanding and disconnection from others that can lead to feelings of loneliness. Unsolicited or pre-emptive support was also provided by parents. This included looking after participants when they experienced symptoms related to their disability and accompanying them out of the house where they were not able to leave the house unaided, enabling them to access places where they might meet people. While some young people described their parent as a “best friend”, others perceived this relationship as a necessity in absence of friends elsewhere. Other close familial relationships were also described as reducing loneliness, such as having supportive in-laws where participants could not discuss topics with their own family.   

Participants described how talking to friends, family or a romantic partner helped reduce feelings of loneliness, as well as broadly improving their mental health. This included being physically present without necessarily partaking in the same activity, providing emotional support, and being able to talk through difficult feelings. Some participants expressed that a key aspect of friends demonstrating their understanding was being able to have open and frank communication. This allowed participants to “get things off their chest” or talk through difficult emotions and thoughts they were having.  Young disabled people reflected that whilst it was preferable to open up about their experiences of loneliness to a close friend or family member, ultimately, they benefited from talking to anyone they could trust, regardless of how close they were; for some people this was a teacher or other trusted adult.

When I was lonely, I locked myself in my bedroom and it made me feel ten times lonelier and I didn’t know why. It’s all about using the connections that you have. If your parents are your best friends, utilise it. Be with them as much as you can.

– Young disabled person experiencing loneliness  

Participants reported that an important aspect of the support offered by their informal network in reducing and managing loneliness came through people showing that they understood how their condition affected them and made them feel lonely. As a result, young disabled people described feeling more supported by their informal support network where they could talk to others with shared experiences or the same condition. Participants were more assured of the authenticity of these relationships, with the sense that these friends “actually cared” about how their condition affected them, bolstering feelings of connection and protecting against loneliness. This shared understanding created a willingness to engage in deeper conversations which were felt to be more meaningful and helped form a higher quality friendship.

If you are open and honest with people, I think it helps build those friendships and connections, and that almost support system, to where you can go and talk to people if you are struggling.

– Young disabled person not currently experiencing loneliness  

Personal tools used to manage and reduce loneliness  

Young disabled people with experience of loneliness described using different personal tools to manage and reduce feelings of loneliness. Independent activities were pursued to better cope with feelings of loneliness, which included listening to or playing music; watching TV; reading; journaling; making art; playing video games; spending time with a pet; meditation; breathwork; using a stress toy; doing chores and physical activity. Some of these activities were described as therapeutic or as bringing “joy” and “energy” and helping participants recharge when feeling “burnt out”. Others described how these activities enabled them to escape and be “sucked into a different world”. For example, participants felt that watching TV shows helped them “feel less alone”, while stress toys were described as a tactile way for young people to decrease feelings of anxiety and distract themselves from feelings of loneliness. While these measures did not address the causes of loneliness, they were effective in making short-term feelings of loneliness easier to manage.

Young disabled people also described taking an affirmative approach to managing feelings of loneliness. For some, this meant working to overcome past trauma or the sense that their current social interactions were defined by past rejections. Some participants described being able to “laugh things off” as important for managing difficult feelings, while others worked to accept feelings of loneliness as normal experiences. Young disabled people reported that maintaining an awareness of their support network (i.e., actively reminding themselves that they have people who are there for them) helped to reduce feelings of loneliness and made them “feel good” about their existing support network.

I think on your own something can feel very big and huge and overwhelming and almost non-identifiable, but if you start to talk about it, even if it’s writing it down and journaling or speaking to somebody you trust… they can often become a lot smaller or you can understand them better.

– Young disabled person experiencing loneliness

Other facilitators  

Some young disabled people reported that social connections were easier to build as they got older. For some this was due to increased opportunities to meet new people (e.g. through work or university), while others felt that as they got older they became more adept at managing their disability to communicate effectively with others. Additionally, participants felt that others became more understanding with age, and reported that their current friends better understood and accommodated their needs compared to when they were at school.

Finally, having access to technology and the internet acted as a facilitator to building and maintaining friendships for some participants, and as a result was key to reducing feelings of loneliness. For example, those who are deaf or hard of hearing could communicate effectively over the phone by adjusting the volume to the appropriate setting. As mentioned in chapter 2, some young disabled people built connections with new people online, including those with similar experiences or interests to them. Others used the internet to maintain relationships with existing connections when their disability prevented them from being able to see friends regularly. Some stakeholders described how their organisations provide digital skills training to young disabled people so that they can participate in activities remotely and enable them to maintain connections with peers online.

5. Conclusions and recommendations

The findings presented in this report go some way to address the evidence gap around young disabled people’s social needs and experiences of building social connections and loneliness. This section presents key findings from the research, including considerations for policies and interventions aimed at reducing loneliness for young disabled people, before making relevant recommendations. Young disabled people had varied experiences of building social connections, with the nature of their disability impacting preferences for online vs in-person communication, and high-quality relationships being more important than the quantity of connections in contributing to overall satisfaction.

Summary of key findings  

• Loneliness impacts were wide-reaching, with a cyclical relationship between disability, social connection and loneliness. Health challenges limited opportunities for social connection, which contributed to loneliness. This adversely affected health symptom management (particularly for mental health), which further limited opportunities for social connection and exacerbated loneliness.  

• Young disabled people faced negative attitudes and stigma around their disability, which impacted their confidence, trust in others, and contributed to feelings of isolation. Disability also contributed to a sense that participants were different to or misunderstood by those around them. These experiences made it harder for young disabled people to form social connections and take steps to reduce loneliness, and / or exacerbated their feelings of loneliness.  

• The impacts of disability made it harder to build social connections by physically isolating young people within their homes, making it difficult for them to take part in activities where they might meet people, or through communication challenges that can make relationship building difficult.  

• Education, where accessible through tailored support and adjustments, provided opportunities for young disabled people to form peer connections. However, a lack of support was widely reported to limit educational attendance which limited opportunities for social connection and led to feelings of loneliness.  

• Accessible work and volunteering provided opportunities to meet new people, practise social skills and build confidence, which were considered important for reducing loneliness. However, some felt these opportunities were limited, with stakeholders commenting that increasing employment accessibility is key to reducing loneliness.  

• Extra-curricular opportunities deepened feelings of connection and reduced loneliness by allowing young people to regularly see the same people or meet others with similar experiences or interests. Such activities need to be accessible and suitable for young people of different ages and health needs to successfully increase opportunities for social connection and reduce feelings of loneliness.  

• Formal support to help build social connection or reduce loneliness was found to be most helpful when it was tailored to the individual and took a flexible and accessible approach. Stakeholders suggested that including elements of co-production – where providers collaborate with service users in the design and implementation of services – was a key facilitator to delivering successful interventions to reduce loneliness. Barriers to accessing such support included long waiting lists, minimal awareness of support available, or existing services not catering to specific needs.  

• Participants received informal support to manage loneliness from family and friends. This included assistance in building and maintaining social connections, and emotional support when feeling lonely. Support was most helpful when offered by those who had a deeper understanding of the participants health condition.  

The section below expands upon these key findings, making actionable recommendations for government, which may also have implications for VCSE sector organisations, places of work and education, and wider society. These recommendations will go some way to reducing barriers to social connection for young disabled people and ultimately reduce loneliness.  

Activities, groups, meeting others with disabilities, and social prescribing

Finding

While extracurricular activities run by the VCSE sector, health services, and local government provided opportunities for some young people to meet others with similar experiences or interests, it was also reported that activities were poorly advertised and some young people were unsure how to find out about these groups. Furthermore, some stakeholders highlighted a lack of social prescribing as a common barrier to tackling loneliness which limited referrals. Some participants also expressed that they would like to meet more people with the same disability or health condition, as this would contribute to closer friendships and increased overall satisfaction with their social connections.  Furthermore, extra-curricular groups were not always considered accessible (physically or financially) or appropriate for all young disabled people, for instance with regards to age or level of health-related needs.

Recommendation

Support the VCSE sector and local government to increase provision of groups for those with common interests and experiences (including similar health challenges) to build social connections. These should be delivered through a diverse range of sufficiently accessible formats (e.g. a mixture of in-person and online), as well as financially accessible and be widely advertised on social media and within healthcare and educational settings.

Educational support and reasonable adjustments

Finding

Health-related challenges in education settings were a key source of feelings of loneliness. In particular, school absences were felt to limit opportunities to build friendships at an important life stage. While some participants reported how reasonable adjustments, such as reduced timetables and the provision of a support worker, and supportive staff helped them to attend more often, other participants did not receive such support, and were further excluded from inaccessible school trips, or faced disciplinary action when a cognitive disability was treated as a behavioural issue.

Recommendation

Support education providers to improve accessibility through reasonable adjustment measures, staff training, and initiatives to help young people increase attendance to provide greater opportunities to build social connections and reduce loneliness. This should take a tailored approach, recognising the individual and disability-specific needs of young disabled people.

Volunteering, employment, and skills

Finding

Work and volunteering provided young disabled people with opportunities to meet new people that they otherwise would not interact with, as well as build skills and confidence to build social connections. In addition to reasonable adjustments to support accessibility, participants cited the importance of supportive managers in making them feel comfortable and able to fit in at work, through understanding and accommodating their disability. However, young disabled people also reported a lack of suitable employment opportunities. This was supported by stakeholders, who also cited a lack of opportunities to build soft skills (e.g. public speaking) and a lack of support in the transition from education settings to employment which, in turn, impacted young disabled people’s employability and opportunities for social connection.

Recommendation

Encourage employers and VCSE organisations to develop and provide accessible work / volunteering opportunities. These should take a flexible approach to supporting young disabled people into work, which will provide them with opportunities to build social connections, as well as supporting their transition from education to work.

Stigma and the cyclical relationship between disability and loneliness

Finding

Young people experienced disability-related stigmatising attitudes, such as people making assumptions about their health, not believing they were disabled and experiences of bullying. These experiences had a lasting impact on young disabled people forming new connections, due to low trust, fears that they would face more negativity, and low self-esteem. In the absence of directly experienced social stigma, young disabled people expressed how perceived stigma (i.e. how they think others perceive them) still acted as a barrier to forming social connections and reducing loneliness. A cyclical relationship between disability, social connection and loneliness was also observed. The impacts of disability restricted opportunities for social connection and contributed to loneliness. In turn, this had a detrimental effect on health management (primarily due to mental health impacts) and led some participants to experience anger and frustration towards themselves or their disability.

Recommendation

Keep raising awareness (e.g. through campaigns and training) of different disabilities to improve understanding and decrease instances of stigma and discrimination that contribute to loneliness for young disabled people.

Formal and informal support

Finding

Some participants described receiving formal support (e.g. through education, volunteering, or extra-curricular activities) to help build social connections or reduce loneliness, with stakeholders commenting that such support is most helpful when tailored to the individual and takes a flexible and holistic approach, including elements of co-production. In addition, informal support (e.g. from friends and family) was often provided by family and friends, which was considered most helpful when offered by those who had a deeper understanding of the participants health condition.

At present, support for young disabled people does acknowledge that different age groups have disparate needs. However, this support is not always aligned with transitional periods in a young persons’ life, such as childhood to pre-teen, teenage to young adult and transition from full time education to employment.

Recommendation

Co-production should be an essential element of any intervention to reduce loneliness for young people with disabilities. This could foster empowerment, increase self-esteem and confidence, and highlight particular needs that project designers may not have initially considered. Any support offered should also take a flexible, tailored and holistic approach.

Support for young adults (18 to 24) should be aligned with and form a logical continuation of previous forms of statutory support they may have received. This would make it easier for people in this age group to know what support is available and what support they need to enable a successful transition to employment, which would ultimately boost opportunities for social connection and reduce loneliness.

Further research is required into the types and intensity of support available to young people with disabilities focused on key life transition periods, particularly the transition from education to employment. Moreover, further research is required to understand loneliness among specific disability groups in relation to different life stages.

Authors

Authors: The National Centre for Social Research (Phoebe Weston-Stanley, Robyn Bennetto, Eddie Cohen, Florence Trégan, Alexander Martin and Emily Sawdon) and RSM UK Consulting (Ali Nur, Samuel Mulvaney and Kieran Jones).

Appendix A

Methodology

Given the exploratory and sensitive nature of the research aims, the study used a qualitative approach. This included:

• Twelve interviews with professional expert stakeholders; and  

• Forty- eight in-depth interviews with young disabled people. Thirty-six of these interviews were with young disabled people with recent experience of loneliness, while 12 were with young disabled people with no recent experience of loneliness.

Sampling

As is the quality standard in qualitative research, the aim was not to be statistically representative of the wider population, but to sample the range and diversity of experiences and circumstances relevant to research aims within the target population.

Participants were selected based on the following primary sampling criteria:

• Age (a range of ages were selected within the 16-24 age bracket)  

• Disability / health condition (physical disabilities / health conditions, sensory disabilities / health conditions, cognitive / mental disabilities / health conditions) ^{[footnote 14]}  

• Employment / education status (in education, in paid or unpaid work, not in work or education)  

• Regular / recent experience of loneliness (based on the participant’s score on the ONS loneliness measures) ^{[footnote 15]}  

Secondary sampling criteria were also monitored to ensure that the research captured a diverse range of experiences. This included: gender, ethnicity, socioeconomic status, and household composition.

Recruitment  

Professional stakeholders. A list of possible expert stakeholders or organisations were identified by NatCen and RSM. Some contact details were provided by DCMS, while other organisations were approached independently by RSM.  

Fieldwork with young disabled people. Research participants were recruited via a trusted recruitment agency, Criteria. Criteria contacted potential participants from their databases and conducted a screening process to ensure that participants were eligible to be included in the research. These participants were invited to take part in an interview.

Achieved sample  

The achieved sample for stakeholder interviews are shown in table A.1 below, and the achieved sample against primary section criteria for interviews with young people are shown in tables A.2, A.3 and A.4 below.

Table A.1 Achieved sample for interviews with stakeholders

Stakeholder organisation	Number of interviewees (n=12) [footnote 16]	Interviewee roles
Charities and voluntary organisations	7	Founder, Head of Public Affairs and Policy, Policy Manager, Policy and Public Affairs Manager, Research Manager, Senior Family Support Manager
Social Enterprises	4	Associate Director, Engagement & Policy, Co-Founder, Lead Sleep Practitioner and Trainer (Founding Director), Project Manager
Academics / Higher Education reps	2	Disability Support Staff, Professor of Psychology and Public Health

Table A.2 Achieved sample for interviews with young disabled people (Disability) ^{[footnote 17]}

Sample group	Physical disability / health condition	Sensory disability / health condition	Mental / cognitive disability / health condition
Group 1, n=36 (recent experience of loneliness)	20	8	25
Group 2, n=12 (no recent experience of loneliness)	7	4	8
Total	27	12	33

Table A.3 Achieved sample for interviews with young disabled people (Whether in education or employment)

Sample group	In education	In paid work or unpaid work	Not in work or education
Group 1, n=36 (recent experience of loneliness)	18	13	5
Group 2, n=12 (no recent experience of loneliness)	5	4	3
Total	23	17	8

Table A.4 Achieved sample for interviews with young disabled people (Age)

Sample group	16-18	19-21	22-24
Group 1, n=36 (recent experience of loneliness)	11	13	12
Group 2, n=12 (no recent experience of loneliness)	2	5	5
Total	13	18	17

Fieldwork  

Interviews with professional stakeholders were conducted in February and March 2024 and each lasted up to 60 minutes.

Interviews with young disabled people were also conducted in February and March 2024 and each lasted between 45 and 60 minutes. Interviews with young disabled people with recent experience of loneliness lasted up to 60 minutes while those with young disabled people with no recent experience of loneliness lasted up to 45 minutes.

Interviews were carried out by telephone or online, using topic guides agreed with DCMS.

Ethics  

Ethical approval was sought via NatCen’s ethics committee, which complies with UK Research and Innovation, ^{[footnote 18]} Government Social Research ^{[footnote 19]} and Social Research Association ^{[footnote 20]} guidelines and standards. Particular attention was paid to:

Informed consent to take part. All research participants were made aware of the nature of the study and the type of topics to be covered before being asked to agree to take part. At all stages it was stressed in writing and verbally that participation was voluntary. For the fieldwork with members of the public, participants received a study information sheet, which set out the purposes of the research along with an explanation of what taking part would involve. Potential participants for the interviews were screened by our recruitment agency to ensure they met criteria for inclusion and were happy to take part. Consent to take part was also audio recorded following reiteration of key information about the research prior to the start of the interview. Participants were asked at the end of the interview if they were happy to be quoted anonymously in the report.

Sensitive handling of the topics. The nature of the topic meant that there was a risk that participants would find the interview upsetting. This was particularly the case for the interviews with participants experiencing loneliness. The study was conducted by experienced researchers who met prior to the start of the fieldwork to discuss potentially upsetting parts of the interview and how these should be handled. Researchers were led by participants in terms of the language used to describe ‘loneliness’ and to describe their disability or health condition. Participants were told they did not have to talk about topics they did not want to, could take a break, reconvene the interview at another time or could withdraw from the interview. They were also told they could have someone with them during the interview to support them if they wanted. All participants were sent a leaflet after the interview listing helplines and organisations they could contact if the interview had raised difficult issues for them. Interviews were generally not conducted on a Friday, allowing the participants to access support if needed on the following day, as some support organisations tend to be closed during weekends.

Disclosure. Participants were advised that the research team may have to disclose information from the interview to someone else if we believed they or someone else close to them was at risk of serious harm (in line with NatCen’s Disclosure policy).

Ensuring inclusivity of participation. In addition to sampling a diverse group of participants, every effort was made to ensure that participants could take part in ways most suitable and convenient for them. They were given the opportunity to take part by phone or video interview using MS Teams, or in person. Interviews took place during daytime and evenings. An incentive was offered for the interview as a thank you and a recognition of the participant’s time, and incentives were also offered to carers if their presence was needed to facilitate participation.

Analysis  

Interviews were recorded (with consent) and transcribed. We used NatCen’s framework approach to analyse the interview data. This approach facilitates robust qualitative data management and analysis by case (i.e. interview) and theme. In the framework each row represents one interview or focus group and each column represents a topic of relevance to the research questions. Relevant information from each interview was written into the corresponding cell. This grouped information around each research question, enabling the research team to assess the evidence relevant to each question. Findings have been integrated across the work strands described above and are presented thematically in this report.

Footnotes

1. Christoffersen, A., (2021). Intersectionality in practice: Research findings for practitioners & policy makers. The University of Edinburgh, Edinburgh. ↩

2. Drawing on Perlman, D. and Peplau, L. A. (1981). Toward a Social Psychology of Loneliness. In R. Gilmour & S. Duck (Eds.), Personal Relationships: 3. Relationships in Disorder (pp. 31-56). London. ↩

3. Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: a meta-analytic review. PLoS medicine, 7(7) ↩

4. Holt-Lunstad, J., Smith, T. B., & Layton, J. B. (2010). Social relationships and mortality risk: a meta-analytic review. PLoS medicine, 7(7) ↩

5. Nuyen, J., Tuithof, M., de Graaf, R., Van Dorsselaer, S., Kleinjan, M. and Have, M.T., 2020. The bidirectional relationship between loneliness and common mental disorders in adults: findings from a longitudinal population-based cohort study. Social psychiatry and psychiatric epidemiology, 55(10), pp.1297-1310. ↩

6. Mann, F., Wang, J., Pearce, E., Ma, R., Schleif, M., Lloyd-Evans, B. and Johnson, S., 2021. Loneliness and the onset of new mental health problems in the general population: A systematic review. MedRxiv. ↩

7. ONS (2018). Loneliness - What characteristics and circumstances are associated with feeling lonely? ↩

8. Drawing on Perlman, D. and Peplau, L. A. (1981) Toward a Social Psychology of Loneliness. In R. Gilmour & S. Duck (Eds.), Personal Relationships: 3. Relationships in Disorder (pp. 31-56). London. ↩

9. Definition from the Campaign to End Loneliness: https://www.campaigntoendloneliness.org/facts-and-statistics/ ↩

10. Ritchie, J., Lewis, J., Nicholls, C.M. and Ormston, R. eds., 2013. Qualitative research practice: A guide for social science students and researchers. Sage. ↩

11. Experienced or actual stigma refers to people’s reported experience of stigma from others. ↩

12. A cochlear implant is a small electronic device that can provide a sense of sound to people who are deaf or hard-of-hearing. ↩

13. Perceived stigma refers to the belief that others might hold negative stereotyped views of a certain condition or behaviour. ↩

14. To capture a range of different disabilities and health conditions, we sought to interview young people with physical disabilities, sensory disabilities, and mental/cognitive disabilities – this information was captured at the screening stage based on participants’ answers to a series of questions about how their disability or health condition impacts them. ↩

15. ONS. (2018). Measuring loneliness: guidance for use of the national indicators on surveys. Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/wellbeing/methodologies/measuringlonelinessguidanceforuseofthenationalindicatorsonsurveys [Accessed on 29th March 2023] The ONS loneliness guidance includes both direct and indirect measures of loneliness. Participants were asked to rate how often they lacked companionship, felt left out or felt isolated from others as an indirect measure of loneliness. Possible answer options were “hardly ever or never”, “some of the time” and “often”. These answers are scored from 1-3, with a possible total score of 9. For group 1, we screened participants who scored more than 6. We also asked them how often they felt lonely as a direct measure of loneliness and screened out those who answered “never” to this question. For group 2, we screened in participants who scored less than 3 on the indirect questions, and screened out those who answered “some of the time” and “often/always” to the direct question. ↩

16. There were 12 interviews in total. The roles listed here total 13 as one participant held two different roles. ↩

17. Some participants had multiple disabilities / health conditions and so may be included in more than one of the categories for disability type. ↩

18. UK Research and Innovation (2022). Policy on the Governance of Good Research Practice. Available from: https://www.ukri.org/wp-content/uploads/2022/03/UKRI-310322-GRP-Policy2022.pdf [Accessed on 3rd April 2023] ↩

19. Government Social Research (2021). Ethical Assurance for Social and Behavioural Research in Government. Available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1000708/2021-GSR_Ethics_Guidance_v3 .pdf [Accessed on 3rd April 2023] ↩

20. Social Research Association (2021). Research Ethics Guidance. Available from: https://the-sra.org.uk/common/Uploaded%20files/ Resources/SRA%20Research%20Ethics%20guidance%202021.pdf [Accessed on 3rd April 2023] ↩