Funded Network Plus Projects

Dance/Connect: an exploration of whether online group dance can support the social and mental wellbeing of young people living with anxiety

“I don’t think the first thing I felt was belonging, but it was more, like, you didn’t need to belong to it because it [the dance class] felt really open so anyone could belong, so it wasn’t necessarily that you had to fit in… I think it was just very welcoming of everyone and there wasn’t judgement... I felt comfortable to kind of dance, or move how ever.” Participant 5, focus group 3

The ‘social cure approach’ is a theoretical framework which suggests that belonging to a group is important for mental health as it enables individuals to feel closer to others [1]. Group membership constructs shared social identities that enables meaningful experiences that support mental health and protect against loneliness through provision of important psychological resources [1]. We’ve been carrying out new research at UCL in the WHO Collaborating Centre for Arts & Health exploring whether online dance classes can support the social and mental wellbeing of young people aged 16-24 through this mechanism of group belonging. However, interestingly, we have found that the young people in our classes did not like the words ‘belonging’ or ‘group membership’ because they were perceived as exclusory. The dance classes felt open and inclusive to participants, with this terminology perceived as ‘constrictive’ (participant 4, focus group 3). So, we are embarking upon theoretically developing the social cure in the context of online dance classes, integrating the language that our young people felt aligned with their experiences of how the classes supported them. Analysis for the study is still underway but, in this blog, we give you a sneak preview of our qualitative findings to date.

Background

Anxiety is common amongst young people, with early adulthood often considered the highest peak in anxiety experiences [2]. Further, due to COVID-19, young people with anxiety have been at higher risk of loneliness, social withdrawal, and worsening mental health symptoms over the last 2 years. The ‘LockdownLowdown’ report highlighted that over two thirds of young people aged 11-25 were concerned for their mental wellbeing during the pandemic, with 63% of those over 18 moderately or extremely concerned [3]. There has been, and continues to be, a clear need to identify accessible activities to protect vulnerable young people at this time, especially those experiencing mental health problems.

As argued by Jetten, Haslam, & Haslam [1], understanding what contributes to loneliness and social isolation is important to counter their harmful effects. It is understood that lack of social support, absence of meaningful relationships, and poor social wellbeing lead to increased loneliness and social isolation which negatively impact upon mental health. Therefore, identifying ways to improve social wellbeing is crucial for reducing loneliness and social isolation. Within this rationale, one effective way to combat loneliness and to improve mental health is through group belonging: the basis of the ‘social cure approach’ which draws upon theories of social identity and self-categorization [1,4].

Research has shown that the social cure approach can support those affected by chronic mental health conditions [5], and this has been applied in the context of the arts [6]. However, whilst there is a burgeoning literature on the benefits of dance interventions to support mental health, including for young people, very little research has applied the social cure approach within the context of dance. This is surprising, given that group dance interventions are particularly promising for fostering social cohesion at a group-level (i.e. fostering rhythmic entrainment and evoking collective emotions that cement social bonds) [7]. Another key gap in the literature is whether online group interventions can foster a sense of group belonging at all, as the majority of research has focused on offline interventions.

Aim and methods

We set out to explore if and how 8-weeks of online dance classes can support young people (aged 16-24) who are living with anxiety by providing them with an opportunity to feel a sense of belonging and identification to an online group. We carried out focus groups and one-on-one interviews which included creative methods, as well as collected reflective creative journals to explore subjective and cocreated experiences of the classes. We also collected self-report surveys using validated measures of loneliness, anxiety, wellbeing, and group identity to track changes in the participants’ experiences and identify mechanisms linking group dance to potential changes in loneliness and anxiety. In this blog, we focus on our qualitative findings to theoretically engage in what we are finding that speaks to the social cure approach. The study was approved by the UCL ethics committee and data has been anonymised for this blog. The classes were delivered by Dance Base, Scotland’s National Centre for Dance.

How our findings are developing the social cure approach

As noted, we are finding that dance class participants did not like to use the language of ‘belonging to a group’, but preferred the idea that they were constructing a shared inclusive online environment.

“…yeah, belonging, definitely I feel like that was wrong, because the idea of belonging is very much for me, like, a subordinance to a group in a sense of also ‘fitting in’, like, it’s constrictive” (participant 4, focus group 3)

“…it’s just the way the word ‘belonging’ is used usually, in the context of ‘you don’t belong’; it kind of suggests that you need like the communities approval or something to be considered a ‘member’, like, someone who’s truly ‘belonging’. And in that sense it’s very exclusive and I, that’s not what this was, in like a good way.” (participant 3, focus group 3)

This negative conception of belonging aligns with social identity theory in relation to how ‘out groups’ are created [8]. Through definition of the personal self in terms of belonging to a group via social categorization (a sense of ‘we’), comparisons to others are created and perceived as ‘out-groups’ (‘they’) [8]. Our dance class participants were very aware of this categorization process and, collectively, worked to construct their shared experience through “terming it as a space or a safe space” (participant 2, focus group 2) rather than a ‘group’, also using the language of a “nurturing environment” (participant 1, focus group 2). To our participants, this environment had less boundaries than a ‘group’, keeping the class open for all members to come together in diversity, rather than sameness.

Another interesting aspect of this construction of a shared environment was that it happened online. In an online environment, there is no shared physical space, but there is a shared online space that is accessed via different physical environments. A supportive ‘environment’ was cocreated through the meeting of physical and virtual spaces. Nonetheless, having cameras off was perceived, by some, as a ‘boundary’:

“I wasn't able to like overcome the boundary of turning my camera on, but that's like a personal thing to me, but I still enjoyed the whole experience.” (participant 1, focus group 2)

In addition, this absence of bodily co-presence and acknowledgement of others sharing the experience of the dance classes enabled some participants to feel liberated and more relaxed which supported mental wellbeing:

“I also found some liberty in having, joining the sessions from my room… the few times when my camera has been off is usually just because I’ve actually turned my lights off, and had really low key light. I actually followed all the moves and things in darkness… it helps me get into a more relaxed mindset and, I dunno, a more fluid state.” (participant 3, focus group 2)

Thus, a key mechanism of the positive experiences that the participants felt was the opportunity to make the classes personalised; participants could choose how to engage in the shared online environment, rather than feel pressured to engage all ‘in the same way’. However, despite saying that the classes did not create a sense of ‘group’ or ‘belonging’, some participants did use the word ‘team’:

“It was like it wasn’t as I wouldn’t quite like call it a sense of belonging. I think maybe just like a team” (participant 6, focus group 1)

Connotations of a ‘team’ may suggest some sense of belonging or boundary creation but, in this case, it was the sense of shared experience that participants focused on, rather than the competitive nature of a team. They described this team as being underpinned by the shared experiences of having anxiety and engaging in an inclusive dance class together, with the relationship to the dance practitioner also highlighted as important to these feelings of inclusivity in the team. For example, the dance practitioner was described as ‘enthusiastic’ and ‘encouraging’ (participant 6, focus group 1).

Through this sense of team and shared environment, participants described a range of personal benefits including improved mood, wellbeing, reduced depression, and feeling ‘mentally relaxed and calm after class’ (participant 8, journal entry). Moreover, engagement with the body was a key mechanism to these benefits. It was described that the classes supported with a mind-body connection, and that dance movements facilitated body awareness. This awareness was viewed as a positive thing that supported wellbeing and, for some, improved confidence and body image too.

Nonetheless, whilst a number of our participants reported these ‘positive’ feelings of engaging in the online space, one of our participants described feeling excluded because of their ethnicity:

“I think that’s just what you’re going to get in a demographic like that, because both the people who are teaching were white, and everyone else in the class was white. So, if you only have one person of colour and they already feel uncomfortable, so they’re not willing to speak up about it, then you’re just not going to get the right experience because there’s just not enough diversity within the group as a whole.” (participant 7, one on one interview)

This participant’s experiences align with social identity theory because they suggest that boundaries created as a result of different ethnic groups may activate the in-group-out-group mechanism through creating different solidarities [9]. Thus, whilst many of our participants felt that their experiences transcended the idea of ‘group’ creation or ‘belonging’, it suggests that boundaries may have been present subconsciously, with this participant feeling excluded. It also suggests that feelings of membership to social groups that exist beyond the online dance class (i.e., ethnic groups) played a role in who felt able to have access to the inclusive environment that many described. There is a clear need to explore the complexities of this exclusion further, reflecting on what could make online dance classes more accessible and diverse in the future.

Summary and next stages

In summary, many of our participants felt that their ‘social cure’ was the co-construction of an inclusive online space and a sense of ‘team’ through sharing dance classes together that were facilitated by an enthusiastic dance practitioner. Many derived personal benefits from this ‘nurturing environment’ such as improved mood and wellbeing, as well as a positive body-mind connection. Nonetheless, one of our participants felt excluded from the classes due to their ethnicity, suggesting that the in-group-out-group mechanism was at play in this context, despite many participants not being aware of this. We will be reflecting further on the complexities of this as we continue analyses, seeking to understand what could make these classes more accessible, diverse, and inclusive in the future.

The Dance/Connect study is funded by the UKRI Loneliness and Social Isolation in Mental Health Research Network. The research team are grateful for their support. To keep up to date with findings from the study, follow @Dance_Connect_ on Twitter.

References

1. Jetten J, Alexander Haslam S, Haslam C. The case for a social identity analysis of health and well-being. Soc Cure Identity, Heal Well-Being. 2012;9780203813:3–20.
2. Mondin TC, Konradt CE, Cardoso T de A, Quevedo L de A, Jansen K, Mattos LD de, et al. Anxiety disorders in young people: A population-based study. Rev Bras Psiquiatr [Internet]. 2013 [cited 2020 Sep 21];35(4):347–52. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-44462013000...
3. The Scottish Youth Parliament, YouthLink Scotland, Young Scot. LockdownLowdown - what young people in Scotland are thinking about COVID-19 [Internet]. 2020 [cited 2020 Sep 13]. Available from: https://www.youthlinkscotland.org/media/4486/lockdown-lowdown-final-repo...
4.  Iyer A, Jetten J, Tsivrikos D, Postmes T, Haslam SA. The more (and the more compatible) the merrier: Multiple group memberships and identity compatibility as predictors of adjustment after life transitions. Br J Soc Psychol [Internet]. 2009 Dec 1 [cited 2020 Jul 10];48(4):707–33. Available from: https://onlinelibrary.wiley.com/doi/full/10.1348/014466608X397628
5. Haslam C, Jetten J, Tegan C, Dingle G, Haslam A. The New Psychology of Health: Unlocking the Social Cure. Routledge; 2018. 510 p.
6. Williams E, Dingle GA, Calligeros R, Sharman L, Jetten J. Enhancing mental health recovery by joining arts-based groups: a role for the social cure approach. Arts Heal [Internet]. 2019 [cited 2020 Jul 3]; Available from: https://pubmed.ncbi.nlm.nih.gov/31146628/
7. Sheppard A, Broughton MC. Promoting wellbeing and health through active participation in music and dance: a systematic review. Int J Qual Stud Health Well-being [Internet]. 2020 Jan 1 [cited 2020 Sep 13];15(1):1732526. Available from: https://www.tandfonline.com/doi/full/10.1080/17482631.2020.1732526
8. Tajfel H, Turner J. Reading 16: Social Identity Theory of Intergroup Behavior. In: Jost JT, Sidanius J, editors. Political psychology: Key readings in social psychology. New York: Psychology Press; 2004. p. 276–93.
9. vom Hau M. Social identities. In: Princeton University Oress, editor. Usable Theory [Internet]. 2009 [cited 2018 Oct 10]. p. 228–42. Available from: https://www.dawsonera.com/readonline/9781400830671/startPage/241/1

So, what is OCD?

People with OCD experience unwanted, persistent thoughts, images or doubts, known as obsessions. These obsessions are usually about being responsible for harm coming to themselves or others and cause huge distress and anxiety. In response to these obsessions the sufferer will do things (either in their mind or their environment) in order to prevent the perceived threat/ harm from occurring. These actions are known as compulsions and are carried out to help keep the person safe, but instead they become a part of the problem.

“I just feel embarrassed by it [OCD] because people don’t really understand it…. or they joke about it or say they’re ‘OCD’ because they like to keep things clean and it’s not that at all”.

“There are so many things that I want to do, that I cannot do, like going out to my friends. I spend most of my time in the house…repeating things that I don’t have be doing”.

“It felt like a big black cloud over me constantly. The thoughts were so intrusive, I had no control over them at all for a long time…It was really lonely and upsetting because nobody seemed to understand what I was going through”.

Obsessive Compulsive Disorder (OCD) is often misunderstood as something “we all have a bit of”, but this could not be further from the truth. The quotes above are from people who took part in our research. Our research aimed to gain an in-depth understanding of how social isolation and loneliness impacts on people with OCD, especially when they are recovering from OCD or/ and when they have experienced a relapse.

We had three questions that we wanted our research to answer:

1. What is the relationship between OCD and experiences of loneliness and social isolation?
2. How do experiences of loneliness and or social isolation become more salient in the context of recovery and/or relapse?
3. How is increased social connection related to experiences of recovery from OCD?

What did taking part in our study involve?

A total of N = 23 participants took part in our research. All of the participants were;

• adults (aged 18+ years)
• self-identified as having OCD and met OCD diagnostic criteria
• identified having the experience of improving or recovering from OCD, but also experiencing a relapse.

 Participants were recruited via advertisements on UK OCD charity websites and social media outlets.

What did participants do?

Potential participants first read an information sheet that explained the study. After reading this, if they wished to take part, they completed a consent form. Participants then completed some questionnaires about their demographics and current symptoms. This was done via a secure online portal.  Eligible participants were then invited to take part in a telephone interview about their experience of OCD in relation to loneliness and social isolation and in relation to recovery and relapse. The interviews were recorded using a Dictaphone and transcribed verbatim. We used a qualitative process called Reflexive Thematic Analysis (RTA) to analyse the transcripts of the interviews.

What we found: results

1. The relationship between OCD and experiences of loneliness and social isolation

“I think OCD is quite isolating because you can’t do normal interaction.  Everything is an effort; everything becomes hard work.”

OCD often involves strictly adhering to specific and extremely time-consuming routines and rituals. Over time these become increasingly more complex and time consuming. OCD creeps into all aspects of one’s life. It squeezes out ‘normal’ everyday, enjoyable, pleasurable and meaningful activities as well as social contacts. 

OCD often prevents individuals from working. For those who are able to maintain work the rituals, routines and rules involved, can be so time consuming and exhausting that little time or energy is left for anything else. Other ‘basic’ parts of life become extremely difficult or not possible at all. These often include; shopping for basic supplies, preparing or eating food, exercise, education, seeing friends and family, caring for loved ones or attending to important relationships. As the fundamentals in life are hugely impacted, life ‘shrinks’ to the bare minimum and OCD takes over becoming all-consuming. Social connections are lost or not build, and feelings of loneliness and social isolation is experienced.

2. How experiences of loneliness and or social isolation become more salient in the context of recovery and/or relapse

“I haven’t been outside; I’ve been isolated from everybody. I haven’t been able to see what life is like. My OCD is telling me what life is like”.

When an individual strives to overcome their OCD, there is often little support from others, due to how socially isolating the experience of OCD has been, up until this point. For many years or decades, it may have been too difficult to allow others into their home and/or to visit others or public places. Life before accessing help is often “a case of existing, not in any way living”. This means support from and contact with others, is often very limited and minimal.

When progress is made in therapy, one begins to reclaim their life from OCD and take back some of the hours that would have otherwise been lost to OCD. On beginning to do this the huge vacuum of time as well as dearth of meaningful activities and social relationships becomes salient. It is very important that the individuals newfound time be filled with meaningful experiences for them. However, this is often much easier said, than done. For individuals who have experienced OCD for years or decades they had completely lost sight of their interests or hobbies, the things they used to find pleasurable, socialising with friends – having friends or family to socialise with. Therefore, support to reengage and to discover/ rediscover a ‘life worth living’ can be vital for preventing relapse and maintaining motivation and resolve. However, this focus on rebuilding is not always included as a standard part of Cognitive Behavioural Therapy (CBT) for OCD. 

When rebuilding doesn’t happen, the opportunity for OCD to ‘sneak’ back in arises. OCD is an insidious disorder, it will allow the individual to justify allowing a compulsion or ritual back in, which at that point may have felt somewhat optional, but quickly becomes non-negotiable. This is a slippery slope, as the obsessions, rituals, compulsions and rules expand again and become harder to challenge and resist. Thus, making relapse more likely.

3. The relationship between increased social connection and experiences of recovery from OCD

“Coming out as an OCD sufferer has socially isolated me in various ways. The loneliness has been very rough”.

Central to treatment and recovery is challenging oneself to do the difficult and scary work of facing and challenging ones worst fears and testing out what happens. Recovery is extremely challenging, and it is recognised by those in the process of recovery that it often requires – or would greatly benefit from – the support and encouragement of others. This social connection is wanted and the value of such is recognised. However, as mentioned such support networks and relationships are often not in place. Thus, the challenge of recovery is added to by the additional challenge of building social connections.

Emerging from a life that has been ruled by OCD is often accompanied by strong feelings of shame and embarrassment, coupled with stigma, which has often become internalised. Re-entering and engaging fully with life can be hampered by the difficulty of trying to explain the ‘lost years’ (or decades), when individuals were not in employment (skills and relevant experience have often moved on), did not have relationships, missed out on having children, were not financially independent etc. Individuals fear judgement and assumptions from people they meet in both employment and social circumstances.

Feeling “understood” is pertinent to recovery and talking to and linking with others who have shared experiences of OCD is recognised as a valuable first step in reconnecting socially. Social connection is perceived to have an important role in helping to maintain treatment gains and enhance recovery. However, intervention is required to support this. Such interventions would ideally form a part of standard treatment and would also be useful post treatment, particularly if delivered in a group format.

Blog Authors: Dr Josie Millar and Ms Lucy Clarkson – Collaborator with lived experience

Research team: Dr Josie Millar, Ms Lucy Clarkson, Mr Ashley Fulwood, Dr Erin Waites & Professor Julie Barnett

 This project was funded by the Loneliness & Social Isolation in Mental Health Research Network, which is funded by UK Research and Innovation and their support is gratefully acknowledged. Any views expressed here are those of the project investigators and do not necessarily represent the views of the Loneliness & Social Isolation in Mental Health Research Network or UKRI.

Concerns about loneliness, isolation and mental health issues were a prominent feature of the discourse surrounding the COVID-19 Pandemic. For loneliness researchers the pandemic presented an unparalleled natural experiment as individuals, families and communities encountered and sought to navigate loneliness and isolation. The Left on Read project explored young people’s experiences of loneliness, isolation and mental health issues during the ‘lockdown’, using online meetings and creative and arts-based methods. Initially we aimed to co-produce arts materials for other young people to stage ‘Homelab’ encounters in their homes. This purpose was superseded by the outpouring of creativity as people decorated their homes and windows, and artists and arts organisations scrambled to create offerings of activities for people to do in their homes, online or outside spaces. As is often the case with co-produced research, which develops collaboratively and eventfully with co-researchers or what are usually called the ‘participants’ (Duggan, 2021); the focus of the project shifted and followed the interests of the young people involved in the inquiry.

A strength of co-produced research is that it has novel beginnings, asks different questions, and disrupts academic discourses or conceptualisations of particular issues. Left on Read was a follow-on study to Loneliness Connects Us, the first large-scale study to explore youth loneliness with young people through co-produced research drawing on creative and arts-based methods. Grounded in the everyday lives and concerns of young people, the research found that discussions of youth loneliness must include young people’s experiences of poverty, inequality and precarity aligned with processes of neoliberalisation (Batsleer and Duggan, 2020). The research found that that the competitive individualism in education and living successful social lives engendered pressures on young people, feelings of isolation and shame that were interrelated with experiences of loneliness. We continued this orientation in the Left on Read project by focusing on the significance of individualising accounts of loneliness in relation to tendencies towards stigmatisation, within the context of the COVID-19 lockdown.

Thinking loneliness beyond the individual

The Minister for Loneliness, Dianna Barran introduced Emerging Together: the Tackling Loneliness Network Action Plan stating, ‘The government’s approach to tackling loneliness aims to put the individual at the heart of the solution.’ (DCMS, 2021: n.p.) This focus on the individual aligns both with the imposition of forms of competitive individualism under neoliberalism but also dominant conceptualisations and methodologies for researching loneliness. For example, Perlman and Peplau (1981: 32) define loneliness, ‘as a discrepancy between one's desired and achieved levels of social relations.’ Similarly, the UCLA Loneliness Scale (Russell, Peplau and Cutrona, 1980) is the leading measure of loneliness and from the items asked (e.g. “I feel isolated,” “There are people I can talk to,” “I feel part of a group of friends”) it is evident that these locate loneliness as an individual self-reporting his or her feelings. Furthermore, conceptualisations of the emergence and spread of loneliness such as emotional contagion (Cacioppo, Fowler and Christakis, 2009) represents the problematic implications of thinking of individualisation of loneliness beyond the single individual. It is important to think how young people might interpret such ideas and develop folk understandings of what it means to be lonely or know another lonely young person as though they are the Malarial mosquito, a vector of social disintegration (Batsleer and Duggan, 2020).

Approach

Left on Read drew on co-produced, creative and arts-based methods (Bell and Pahl 2018), working with the capacity of arts methods to create complex, relational and productive engagements with research subjects (Rotas and Springgay 2014). The original aim was to work with the group of youth co-researchers to create a series of ‘Homelab’ encounters, that is creative and arts-based activities that other young people could stage and encounter in their own homes, outside spaces or online according to the rules of lockdown. The research developed through 24 weekly meetings, held on a secure online platform with video, audio, chat, and draw functions. The meetings brought together 9 young people with two adults, leads for leads for research, and youth work and arts practice. We also invited arts practitioners to join the sessions and provide inspiration and new artistic practices to lead online sessions with the group.

As the research progressed and the pandemic continued our aspirations for what we could achieve changed. In part, so many other artists and cultural institutions created arts activities for young and families that there seemed little point in duplicating this work. Instead we developed the research by developing combinations of constraints and resources to provoke and challenge thinking and feeling in new ways about loneliness (Duggan, 2021), and attuning to ‘what matters’ amongst the productive potentials that are created through these processes (Stengers, 2021: 85). We conceived and enacted a diverse and expansive range of research practices. Two of these practices relevant here are: One, we worked with the poet Helen Mort to write collaborative poetry as a way of thinking loneliness beyond ourselves as individuals. Two, we engaged with Cassie Thornton’s (2020) Hologram model to explore different logics and ways of relating to one another in a mental health context.

Conclusions

The research aimed to attune to what matters through the collaborative encounters and experiences with one another as we lived through the pandemic, especially in relation to ideas of individuality and the project form of the research.

One, there is a long tradition of thinking mental health issues and distress beyond the individual (e.g. Smail, 2009) but we found it useful and productive to think and feel in various ways about ourselves and our lives that do not individualise loneliness and mental health issues. It is no easy task to think about ourselves and one another without beginning in our position – as me, James Duggan, for example – but through collaborative poetry writing and the other arts and creative encounters we were able we found ways of thinking and feeling loneliness that were more  relational, embodied, affective and more-than-human accounts of loneliness perhaps focusing on a speculative and pragmatic idea of the event.

Two, the pandemic unsettled much in our lives including academic identities and sensibilities in terms of what action we ought to take to help in particular vulnerable communities (Duggan and Hackett, 2020). As principal investigator I struggled to navigate the emotional, social and ethical implications of developing a project on youth loneliness during a time when many young people were experiencing isolation and a lack of support. We realised that although participating in arts activities was important, what we really valued was being part of a group, supporting and caring for one another. The challenges of providing a broad range of young people with access to such a group would challenge existing approaches to developing projects and services with young people. Instead we are interested in thinking in terms of enabling emotional infrastructures of care (Berlant 2016); alternative forms of sociability such as social and emotional commons (Stavrides 2016); and new imaginaries of what services and projects could be in terms of different ideas of expertise, resource and relationships (e.g. Thornton, 2020). 

Making shifts both in relation to the focus of our theories and practices (i.e. the lonely individual) and the social and material relations that structure our engagement with young people (i.e. the research project).

Strengths and limitationsStrengths

• The research identifies new ways of engaging with youth loneliness, unsettling discourses and practices that over-emphasise the individual and link with tendencies to blame and stigmatise young people experiencing loneliness.
• The COVID-19 Pandemic foregrounds a future of increasing societal disruption due to climate breakdown, the research identifies the limitations of organising research as a project and the need to develop new arrangements appropriate to working in ongoing emergencies.

It’s raining outside. It’s miserable. There’s nothing to do. And I feel like, you can look at yourself sometimes and just go, ‘What a mess. I don’t want anyone to see me today. I don’t want anyone to come to the door. I’ve had enough’…I still have bouts of that, where I look at myself and I cry. I’m just like, ‘What has happened to me? What have I become?’

(Lottie, a 21-year-old White British mother diagnosed with postnatal depression)

When Lottie became pregnant unexpectedly in 2014, she hoped she and her partner Darren would manage, one way or another. But then Darren moved on to a new relationship, leaving her to go through pregnancy and motherhood alone. Lottie described how, before she became pregnant, “I was so confident and outgoing and it was like, ‘Hey, where’s the party?’. But then, “You lose the man that you were with. You’ve become pregnant, so you end up doing it all on your own. And you haven’t got anyone with you. And you haven’t got a job anymore. So you end up losing your whole life in one big blow”. She explained how, “You just feel lost in a way”.

New mothers have experienced worryingly high rates of distress during the Covid-19 pandemic, which some link partly to social distancing measures (Fallon et al., 2021; Farrell et al., 2020). But, even before the pandemic and its restrictions to social contact, some women, like Lottie, experienced changes in their lives and relationships during and after pregnancy, which made this a difficult time for them. This is likely to continue to be the case for some mothers once the pandemic is over.

As part of a larger study at UCL, we interviewed fourteen women who had all been treated by the NHS for feelings of depression during pregnancy or after the birth of their baby. We interviewed women (before the Covid-19 pandemic) asking them about their experiences. We looked at these women’s accounts to see whether they described isolation and loneliness as playing a part in their distress. We considered loneliness to be an unpleasant feeling of having inadequate social relationships, and isolation as having, or seeing yourself as having, limited social contact. There is growing evidence that isolation and loneliness can contribute to significant mental distress, including during pregnancy and after birth. We were keen to find out whether supporting new mothers to strengthen their social networks might be helpful.

We looked at the fourteen women’s interviews in collaboration with a group of women who themselves had lived experience of perinatal distress. This ensured that we interpreted the findings from multiple standpoints.

We found that women often connected difficult and distressing feelings during and after pregnancy to feeling ‘dislocated’ from their previous identities and relationships. Some women used the words lonely and isolated to describe themselves, while others, like Lottie, talked about feeling lost, alone, or having nobody.

Importantly, we found that women felt confined to their homes by the mothering role and isolated from wider social networks. A lost sense of self was particularly apparent among first time mothers who had given up their jobs or taken time away from work to have a baby. Lisa, a married, white British first-time mother, explained:

“If you have been working, you’ll be going to work every day, you had a role, you’ve been there, you’ve been amongst these people, you’ve been doing that thing. And suddenly, you’re by yourself with this baby, you don’t know what to do with your baby. Really, all day, you just think, ‘Oh, what do I actually do?’ And it, yes, does-, it is quite a lonely thing, actually.”

The women described motherhood as relentless. Lisa said she became “a little husk” and “just wanted to be looked after”. Many of the mothers we interviewed felt they were left to care for their babies largely alone, seen automatically as the primary caregiver. Meanwhile, women’s relationships, especially with their partners, changed, which sometimes resulted in conflict and breakdown. Anaya, who was from an African Muslim background, and was parenting alone while also seeking asylum in the UK, described how, back home, wider family networks generally helped care for babies, but in the UK she had “nobody”. Although a new baby made some women feel less alone, others felt more alone without supportive networks around them and some had trouble bonding with their infants.

We found that cultural ideas around what makes a ‘good’ mother and a ‘bad’ mother created rigid and unrealistic expectations for how women should feel and behave when they have a baby. Mothers felt they were expected to enjoy being mothers, take to motherhood ‘naturally’, and love their babies unconditionally without feeling angry or desperate. Lottie said she avoided meeting other mothers because, “You’re constantly worried they’re going to judge you”. This idea of a ‘good and bad mother’ provoked feelings of inadequacy in women and made it difficult for them to feel comfortable meeting others or expressing negative emotions, increasing isolation and distress.

Our findings also showed how being single, young, deprived or from a minority ethnic background could affect women’s experiences. Some mothers had to care for their babies in impoverished circumstances, and those migrating to the UK sometimes lacked financial support because of their status in the country. Single mothers felt they lacked a community or family network that could help them through difficult times or give them respite from sleepless nights. Some of the young, single mothers sought to show they were strong and resilient because they were having to ‘go it alone’, but being young, single or deprived was also seen as more likely to result in being judged an inadequate mother. However, an important finding was that women could still feel lonely, isolated and inadequate despite having people around them, if they didn’t feel supported in the way they needed.

Some women did manage to make meaningful connections with other mothers who they felt were in similar situations and found this comforting and reassuring. In some cases, mothers also got support from relationships with professionals such as midwives, health visitors or mental health workers. But as professional relationships were often short-term, women’s feelings of loneliness or abandonment could increase even more when these ended. Our findings suggest that services need to offer women support in a way that is sustainable and that recognises the human nature of therapeutic interactions.

Overall, our research highlights a need to advocate for social change to lessen pressures on women and their families during and after pregnancy, and to challenge the binary and damaging ‘good/bad’ mother divide. Women’s accounts show how feelings of depression during pregnancy and after birth are often experienced as social in nature, suggesting it is important to develop support for women which addresses interpersonal relationships, social networks and wider social structures.

While our findings support the idea that facilitating connections between mothers may be valuable, for example through peer support, it is clear that this must be done in a way that is sensitive to things like ethnicity, class, age and relationship status. It must also be recognised that mothers may be fearful of connecting with ‘similar’ others and that other options might be preferred.

Please also see this blog reviewing a paper we published on our findings.

The full published paper can be found at: https://www.mdpi.com/2077-0383/10/11/2271

Research team: Dr Billie Lever Taylor, Dr Angela Sweeney, Professor Louise Howard, Dr Katherine Jackson, Dr Nadia Mantovani, and Dr Selina Nath

Background

Depression is a common mental health problem and there is evidence that rates of depression are rising among older adults.1,2 As we age, depression can be more difficult to diagnose and many people never get treatment.1 We need to identify modifiable causes of depression among older adults, so we can design interventions to target these causes in the general population.

Around a third of older adults in the UK report loneliness.3 We know that older adults who experience loneliness are more likely to develop depression in the future.4  Certain older adults have a higher risk of depression than others, for example those who are lesbian, gay or bisexual (LGB) and those who have chronic physical health problems.5 However, we have a poor understanding of what causes the increased risk of depression in these groups. Interventions for loneliness, such as community groups, could reduce or prevent depressive symptoms in these groups, if there was evidence that loneliness was a causal link in this pathway.

Although loneliness might contribute to the increased risk of depression in older adults who are LGB or have chronic physical health problems, few studies have tested this hypothesis.

Aims and objectives

We conducted two studies to address the following research questions:

Study 1

1.1 Are LGB older adults at increased risk of future loneliness compared with heterosexuals?

1.2 To what extent does loneliness contribute to increased risk of future depression in LGB compared with heterosexual older adults?

Study 2

2.1 Are older adults with chronic physical health problems (illness or injuries) at increased risk of future loneliness compared with the rest of the population?

2.2 To what extent does loneliness contribute to increased risk of future depression in older adults with physical health problems compared with the rest of the population?

We used the English Longitudinal Study of Ageing (ELSA), a representative sample of adults aged 15 and over. More than 18,000 people have taken part in ELSA since it started in 2002, with the same people re-interviewed every two years.

We used data on sexual orientation and physical health at one point in time (2012), loneliness two years later (2014), and depression two years after that (2016). To test whether being LGB or having physical health problems was associated with an increased risk of loneliness two years later, we used linear regression models. To test the extent to which loneliness contributed to the increased risk of depression in these groups we conducted causal mediation analyses. We performed these analyses before and after adjusting for a range of variables that might confound these associations.

Results

Study 1: the role of loneliness in the association between sexual orientation and future symptoms of depression

We used data from 6794 participants who provided data on sexual orientation at the sixth follow-up point of the ELSA study. We used a binary variable (LGB or heterosexual) due to small numbers in certain sexual minority groups.

We found that, compared with heterosexuals, LGB older adults scored higher on depressive symptoms two years later (mean difference: 0.26, 95% Confidence Interval 0.10 to 0.42). We also found that sexual minority older adults had higher levels of loneliness than heterosexuals (mean difference: 0.18 95%CI 0.08 to 0.27). In our mediation analysis, loneliness accounted for 20% of the association between sexual orientation and depressive symptoms two years later. 

Study 2: the role of loneliness in the association between chronic physical illness and future symptopms of depression

We used data from 4,793 participants. The physical illnesses we investigated included: arthritis, cancer, diabetes, cardiovascular disease, stroke, and chronic obstructive pulmonary disease. We created a binary variable to indicate whether people had at least one of these physical illnesses or not.

We found that depressive symptoms four years later were 21% higher (incident rate ratio = 1.21, 95%CI = 1.03-1.42) in people who had physical illness compared with those who did not. However, we found no evidence of that loneliness two years later was higher among people who had physical illness compared with those who did not. There was no evidence that these associations differed according to the type of physical illness people had, or the number of physical illnesses they had. We therefore concluded that loneliness was not a potential mechanism underlying the increased risk of depression in older adults with physical illnesses. As a result, we did not conduct tests of causal mediation.

Strengths and limitations

The main strengths of our study include:

• The large sample which was representative of the English population of older adults
• The repeated measurements of loneliness and depression over multiple time-points
• The rich set of potential confounding variables including genetic data.

The main limitations of the study include:

• We can never be certain of causality when using observational datasets
• We created a binary variable for sexual orientation which did not allow us to investigate more specific orientations separately (e.g. lesbian, gay, bisexual)
• ELSA did not collect information on whether people were transgender, gender diverse or non-binary
• Most of the physical illnesses were either arthritis or cardiovascular disease. This may have limited the conclusions we could make about other chronic physical illnesses with smaller numbers, such as stroke and COPD
• Like most cohort studies there were missing data, which can introduce bias. However, we conducted an analysis where we replaced missing data using statistical methods and the results did not differ.

Conclusions and implications for practice

Our findings suggest that increased risk of depression in LGB compared with heterosexual older adults is due, in part, to higher levels of loneliness. About half of older gay and bisexual men and more than a quarter of lesbians and bisexual women live alone, compared with less than a fifth of heterosexuals.6 Sexual minority older adults are more likely than heterosexuals to be single, to not have children and to have lost loved ones (e.g. to HIV or suicide).7,8 They are also less likely to see their family. 9 Stigma and discrimination are likely to play an important role.10 Fears about being their true selves might lead to a lack of meaningful connections and a sense of social invisibility. Community interventions which provide safe inclusive spaces where LGB older adults can build meaningful connections could reduce loneliness in this group, and prevent future symptoms of depression.

We found that chronic physical illness increases the risk symptoms of depression in older adults. However, we found no evidence that this occurs because physical illness leads to loneliness. We found no evidence of an association between the physical illnesses we examined and loneliness. Our evidence suggests that reducing loneliness among older adults with chronic physical illness is unlikely to prevent future depression.

Involvement of people with lived experience

The idea for our study on physical health problems and loneliness was developed by Stephen Lee, a member of the Loneliness and Social Isolation in Mental Health Network Co-production Group, who has experience of loneliness and depression. Stephen worked with us as part of the research team on this project.

We also worked with older adults from the Befriending scheme run by Opening Doors London (ODL), the biggest charity providing support services for LGBT+ people over 50 in the UK. We would like to thank members of ODL for their input into the interpretation of our findings on sexual orientation, loneliness and depression.

References:

1. Rodda J, Walker Z, Carter J. Depression in older adults. BMJ. 2011; 343. DOI:10.1136/bmj.d5219.
2. Yu B, Zhang X, Wang C, Sun M, Jin L, Liu X. Trends in depression among Adults in the United States, NHANES 2005–2016. J Affect Disord 2020; 263: 609–20.
3. Victor CR, Yang K. The prevalence of loneliness among adults: A case study of the United Kingdom. J Psychol Interdiscip Appl 2012; 146: 85–104.
4. Lee SL, Pearce E, Ajnakina O, et al. The association between loneliness and depressive symptoms among adults aged 50 years and older: a 12-year population-based cohort study. The Lancet Psychiatry 2021; 8: 48–57.
5. Lewis G, Hayes J. Common mental disorders: falling through the gap. The Lancet Psychiatry 2019; 6: 636–7.
6. Fredriksen-Goldsen KI, Kim H-J, Barkan SE, Muraco A, Hoy-Ellis CP. Health Disparities Among Lesbian, Gay, and Bisexual Older Adults: Results From a Population-Based Study. Am J Public Health 2013; 103: 1802–9.
7. Stonewall. Lesbian, Gay and Bisexual People in Later Life. 2011.
8. Kim H-J, Fredriksen-Goldsen KI. Living Arrangement and Loneliness Among Lesbian, Gay, and Bisexual Older Adults. Gerontologist 2016; 56: 548–58.
9. Jopling K, Barnett A. Alone in the crowd: loneliness and diversity
10. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: Conceptual issues and research evidence. Psychol Bull 2003; 129: 674–97.

‘Farming is not just a job, it’s a way of life’ is a common refrain among the UK farming community. The phrase says a lot about how farmers view the occupation, inferring the centrality of farming to not just their everyday lives but also to the construction of their identities. It is a way of life often imbued with romantic notions of a bucolic idyll - and many farmers will indeed talk about the pleasures and benefits it affords - but it can also be very physically and mentally demanding, involving long hours, low financial returns, and a multitude of business-related pressures. As we discuss in this article, it can also be a very lonely occupation, with farmers and farm workers increasingly working alone, often in remote locations.

Partly as a result of these challenges, the personal costs of farming can sometimes be high and recent research has highlighted concerning levels of mental health problems across the industry (RABI, 2021). The fact that more than one farmer a week in the UK takes their own life (ONS, 2020) is a shocking signifier of the issue. Loneliness and social isolation have been identified as contributors to poor mental health within agriculture (e.g. Davies et al., 2019; Furey et al., 2016), but have not previously been explored in any great detail, particularly in the UK context. In this blog we talk about some of the key findings from research which set out to better understand how people within the farming community experience loneliness and social isolation, and the role that farming-specific cultures, environments and identities play in these experiences.

Methods

The research was conducted by the Centre for Rural Policy Research (CRPR) at the University of Exeter in partnership with the Farming Community Network (FCN), a charity that provides personal and business support to farmers and their families through a network of volunteers from within the farming community. The key methods used were:

An online workshop with 11 farm support practitioners in December 2020 to help identify some of the key issues and inform the design of the subsequent interview questions. In-depth telephone/video interviews with 22 farmers/members of farming families and 6 farm support practitioners, conducted between March and July 2021. Participants represented a range of ages, genders, farm sizes and farm tenures.

Results

Loneliness is not of course a phenomenon unique to farming and some of the factors that our participants identified as contributing to loneliness are relevant to anyone whatever their occupation (e.g. bereavement; relationship breakdown). There were, however, a number of farming-specific factors commonly cited as contributing to, or exacerbating, the issue within the agricultural community. These factors can be described as relating to three different types of loneliness: social; emotional; and cultural loneliness.

Social loneliness

Social loneliness essentially arises from an individual not having the social connections or opportunities that they would like. In farming, social loneliness is often connected to factors such as:

Long working hours, partly driven by challenging economics and pressure to keep the family business going Lone-working, which is felt to have increased over the years due to increasing mechanisation and fewer people working on farms Lack of social opportunities, as it can be difficult to take time away from the farm Declining business related contact, including due to reductions in the number of traditional meeting places/events such as livestock auction markets Geographical isolation associated with rural locations, poor broadband connectivity and transport links.

Emotional loneliness

Emotional loneliness can be described as an absence or loss of meaningful relationships, of people who you can talk to and confide in. It is thus more about the quality rather than quantity of relationships and might be felt even when the individual appears to be surrounded by friends and family. Certain features of farming life can feed into this type of loneliness and affect how it is experienced. These include:

Business-related stress, especially where the individual has sole decision-making responsibilities Family tensions and expectations associated with the family business (e.g. farm succession) A lack of home/work boundaries, which can make it difficult to discuss personal problems with family members Relationship difficulties, often related to the long working hours involved in farming

Further details about the methodology and participant characteristics can be found in our summary research report). 

Cultural loneliness

Cultural loneliness refers to feelings that arise from a sense of difference with others in the wider community, perhaps feelings of being an outsider or being misunderstood by other cultural groups. Farmers are a distinct cultural group and, as such, many farmers described feeling a strong sense of disconnection with the wider non-farming public. Issues contributing to a sense of cultural loneliness included:

Changes to local communities and associated tensions and misunderstandings regarding farming Perceptions of a wider public disconnection with, and undervaluing of, farmers and farming Contractions in the size of the farming community (linked to wider agricultural restructuring processes in which farms have got fewer and larger over recent decades) Public pressure around issues such as climate change and other environmental problems Policy demands, inspections and regulations, which can create a sense of being unfairly burdened and scrutinised.

Gender differences

Men and women typically carry out different roles within farm businesses/households and their experiences of loneliness often differ. Traditional gender roles often still hold sway, with women frequent left juggling multiple home, childcare, and business-related tasks alone whilst their partners are out working on the farm (also alone). Both men and women can therefore find it difficult to find the time and opportunity to socialise with others and suffer from loneliness, though often for different reasons.

The role of farming culture

There are certain aspects of farming cultures and identities that underlie drivers of loneliness and affect how the issue is perceived and addressed. For example, ‘hard work’ is frequently seen as an accepted and valued part of what it means to be a farmer, and this can press farmers to work harder whatever the situation, making reducing the long-working hours that contribute to loneliness in farming challenging. Family business structures and intergenerational living arrangements, which are common in the agricultural community, can create or intensify family tensions and contribute to emotional loneliness, whilst stoicism and persisting taboos around mental health within farming can make it difficult to confide in others and seek help for personal issues.

Implications and conclusions

Experiences of loneliness in farming need to be understood in the context of farming cultures and environments. Certain values and expectations around work and family responsibilities, as well as practical and economic factors, can make it difficult for farmers to feel socially and emotionally connected to others, leading to or exacerbating feelings of loneliness and related mental (and physical) health problems.

Addressing these issues requires both practical farm support and cultural change in some areas, for example around attitudes to work and time off. The presence of cultural loneliness highlighted in our research suggests there is also a need to improve farmer-community relations, for instance by building opportunities for local engagement and strengthening education around food production, farming and environment. A number of other recommendations for government, farm support organisations and the wider farming industry can be read in our research report.

Above all, however, farming-specific support for people experiencing loneliness within this community is essential. Our participants were unanimous in their praise for the work of the Farming Help charities (including but not limited to FCN) and it is vital that such organisations, as well as other peer support networks, are properly funded so that their invaluable work can continue.

Strengths and limitations

Our research has provided deeper understanding of the experiences of loneliness and related mental health issues within the farming community. The qualitative nature of the research allowed participants to voice their own stories, whilst also enabling commonalities in experiences to be explored.

We are, however, able to say little about the extent of loneliness across the UK farming community as a whole from this study alone. More work is also needed in order to understand some of the details and nuances involved (e.g. whether particular forms of loneliness are more associated with particular farm types/sizes/locations etc. than others, and why) and to assess the effectiveness of different types of intervention for this particular community.

References

Davies, A.R., Homolova, L., Grey, C., Fisher, J., Burchett, N., Kousoulis, A., 2019. Supporting farming communities at times of uncertainty: An action framework to support the mental health and well-being of farmers and their families. Public Health Wales and Mental Health Foundation.

Furey, E.M., O’Hora, D., McNamara, J., Kinsella, S., Noone, C., 2016. The Roles of Financial Threat, Social Support, Work Stress, and Mental Distress in Dairy Farmers’ Expectations of Injury. Frontiers in Public Health 4, 1–11. https://doi.org/10.3389/fpubh.2016.00126

ONS, 2020. Suicide by occupation, England and Wales, 2011 to 2020 registrations.

RABI, 2021. The Big Farming Survey: The health and wellbeing of the farming community in England and Wales in the 2020s.