‘It feels meaningful’: How informal mental health caregivers in an LGBTQ community interpret their work and their role

Abstract

Many members of lesbian, gay, bisexual, trans and gender diverse, and queer (LGBTQ) communities provide informal mental health support to peers. This type of support is valuable for people who receive it – even helping to prevent suicide. It is also meaningful to those who provide it. In this article, we focus on how LGBTQ people derive meaning from their experiences of supporting peers. In-depth interviews with 25 LGBTQ people in Melbourne, Australia, indicate that those providing informal mental health support to fellow community members recognise their roles as meaningful in three main ways: in terms of self, relationships and communities. Recognising the meanings that LGBTQ caregivers derive from helping fellow community members provides useful information service providers and policymakers seeking to better address mental distress in LGBTQ communities and support caregivers. It is useful to understand this meaningful work in an LGBTQ context as caregiving that challenges gendered and heteronormative assumptions about what care is, and who provides it.

Keywords:

• Informal mental health support
• LGBTQ
• mental distress
• suicidality
• caregiving
• meaning making

Introduction

Lesbian, gay, bisexual, trans and gender diverse, and queer (LGBTQ) people experience elevated rates of mental health problems such as anxiety, depression and suicidality, compared with the general population (Hill et al. 2021; King et al. 2008; Skerrett, Kõlves, and Leo 2016). Yet, the mental health needs of many LGBTQ people often go unmet (Cronin et al. 2021b). Fear of discrimination (Lim et al. 2021) and internalised stigma (Cronin et al. 2021b) are some of the barriers that prevent LGBTQ people from accessing professional mental health services (Cronin et al. 2021a; Lim et al. 2022). Furthermore, mental health professionals are often not well enough trained to meet the needs of LGBTQ clients (Klein 2017) and/or are not culturally competent when it comes to LGBTQ communities (Higgins et al. 2021).

In this context, informal mental health support, performed by peers, is a crucial community response to unmet mental health needs in LGBTQ communities (Worrell et al. 2022) in which rates of suicidality, especially, are elevated. Suicidality is particularly high among people who identify as pansexual, bisexual and/or trans and gender diverse, as well as among young people (Dickey and Budge 2020; Strauss et al. 2021; Taylor, Power, and Smith 2020). Relatively little, however, is known about the impacts of informal mental health support on LGBTQ caregivers who provide it. Research has so far focused on the caregiver’s own mental health impacts and the coping strategies that they employ as a result (Worrell et al. 2022). This is consistent with research that shows that being a caregiver for someone with mental illness is associated with psychological challenges, such as depression and anxiety (Eckardt 2020).

In this paper, we conceptualise informal mental health support in LGBTQ communities as a form of caregiving. There is no single definition of caregiving. It is typically characterised as unpaid work that helps someone with daily living needs (Roth, Fredman, and Haley 2015) and is provided outside of professional settings (Hoover et al. 2022). Caregiving is often thought of as providing practical or physical support. However, Hermanns and Mastel-Smith (2015) have argued that caregiving provides elements of physical, mental, emotional and social support. Examples of this include supporting someone financially, helping them with errands or other physical tasks like cooking and cleaning, ensuring they are taking medication or engaging eith other treatments, and providing companionship or a safe space to talk. Accordingly, informal mental health support in LGBTQ communities may be considered as caregiving since it often encompasses mental, emotional, physical and social support, and is provided in both acute and chronic situations.

While more is being understood about the experience and challenges of caregiving in the context of ageing LGBT people (Waling et al. 2022; Waling et al. 2019; Alba et al. 2020), the informal mental health support provided in LGBTQ communities remains under-explored more generally. By reframing informal mental health support in LGBTQ communities as caregiving, we ask, ‘what meaning do LGBTQ informal caregivers derive from the mental health support they provide to, and gain from, fellow community members?’

Informal mental health support in LGBTQ communities

Many LGBTQ people turn to fellow community members for support with their mental health. Informal mental health support in this context is crucial work, even helping to prevent suicide. Research by the authors shows that various actors perform informal mental health support roles in LGBTQ communities (Worrell et al. 2021; Worrell et al. 2022; Worrell et al. 2023). They include partners, friends, housemates, community group members and ‘friends of friends’. The duration and frequency of this support can vary. More broadly, informal care in LGBTQ communities often involves non-legal relatives who have less access to caregiving support (Croghan, Moone, and Olson 2014).

Informal mental health support in LGBTQ communities transcends cis-heteronormative and gender stereotyped assumptions about caregiving (Ang, Thang, and Ho 2023), while reinforcing the importance of physical, mental, emotional and social support (Hermanns and Mastel-Smith 2015). Throughout this paper, we use ‘caregiver’ to refer to various community members who assist a fellow community member experiencing mental distress without receiving a caregiver’s allowance or it being part of their paid employment.

The challenges of informal caregiving

Caregiving can be demanding and time-consuming. Being an informal mental health caregiver can limit a person’s participation in paid employment (Diminic, Hielscher, and Harris 2019). Caregivers can also become socially excluded and experience financial difficulties (Greenwood, Mezey, and Smith 2018). A study of 105 adults caregiving for someone aged 16 or over with a mental health problem in Australia showed that, on average, caregivers provided care for more than 37 h per week (Hielscher et al. 2019).

Studies show that providing informal support to someone with serious mental illness can have an impact on the caregiver (Siddiqui and Khalid 2019; Scerri et al. 2019). Support for those providing informal care is often limited, particularly in marginalised communities. For example, informal caregivers from culturally and linguistically diverse backgrounds often come up against ‘poor culturally oriented services in mental health’ (Poon and Lee 2019, 312). LGBTQ people face similar obstacles. An Australian study found that the caregivers of LGBTQ people experiencing mental illness faced discrimination when accessing mental health and community services, which led to disengagement from these services (Martin et al. 2019b). Another study showed that LGBTQ informal mental health caregivers engaging with community and mental health services reported a lack of staff responsiveness to issues faced by LGBTQ community members, leading to conflict (Martin et al. 2019a).

The burden of caregiving

Some of the above challenges can be explained by the concept of ‘caregiver burden’, which describes ‘the emotional, social, and physical strain or load borne by the caregiver of a chronically ill person’ (Sołtys and Tyburski 2020:2). First theorised in the 1980s, ‘caregiver burden’ recognised an association between the burden that caregivers felt and the social support services available to them (Zarit, Reever, and Bach-Peterson 1980).

A key limitation of the ‘caregiver burden’ concept is that it does not recognise the richness of caregiving, most notably the positive aspects (Campos, Mota Cardoso, and Marques-Teixeira 2019). Research into the experience of informal caregivers of those receiving palliative care, for example, shows that a sense of obligation to care can be ‘rewarding’ rather than wholly negative (Wong and Ussher 2009). The concept of ‘the experience of caregiving’, which gained traction in the late 1990s, prompted researchers to explore caregiving as highly variable, influenced by gender roles and consisting of both positive and negative aspects and outcomes (Campos, Mota Cardoso, and Marques-Teixeira 2019). Such a conceptualisation demonstrates the complexity of caregiving, which involves both obligations and rewards, sometimes leading to role confusion. Research has found, for instance, that older LGBTQ + caregivers do not generally access external support and resources to supplement their caregiving duties, often feeling that because caregiving should be a form of love, they should not be accessing additional support or monetisation (Hughes and Kentlyn 2011; Shiu, Muraco, and Fredriksen-Goldsen 2016; Waling et al. 2022). Caregiving as a labour industry is also devalued as it is considered a feminised practice, again with an ongoing discourse that caregiving should derive from love and concern rather than monetary gain (Glenn 2000; Glenn 2012).

Meaning making through informal care

Another way of extending understanding beyond a focus on the burden of care is to explore what being an informal caregiver means to the person performing that role. Meaning making describes ‘how people make sense of life events, relationships and the self’ (Geard et al. 2020, 1). Meaning plays an important role in informal care processes. Those performing care roles within a family, for example, may ‘assume substantial responsibilities whose meanings are more complex than … the responsibilities themselves’ (Ayres 2000, 432).

Against this backcloth, in this paper, we explore the meanings that LGBTQ informal caregivers give to their experiences of supporting peers. We focus on the ways in which informal caregivers conceptualise their care experiences as meaningful, both in terms of helping someone and in broader ways that also consider their sense of self, relationships and LGBTQ communities. Better understanding how LGBTQ caregivers derive meaning from their roles may help policymakers and service providers better support LGBTQ informal mental health caregivers.

Methodology and methods

Participants

Following La Trobe University Human Research Ethics Committee Approval (Reference: HEC 20369), twenty-five adults identifying as LGBTQ and living in metropolitan Melbourne took part in an in-depth interview. Involvement in the study required participants to have provided informal mental health support to a fellow community member in the previous 12 months. This included, but was not limited to, chronic or acute situations, including those in which the person was experiencing suicidality or had attempted suicide.

Participants were recruited from an online survey, promoted through targeted advertising on social media and conducted by the authors, about providing mental health support to a peer. Those who had supported someone experiencing suicidality were prioritised for an interview. This paper deals only with the data from the qualitative interviews. Participants ranged in age from 23 to 79. Most were Anglo-Celtic in heritage and 21 out of 25 had been born in Australia.

Twelve reported being trans or gender diverse, seven were cisgender women and six were cisgender men. In terms of sexual identity, 10 used multiple terms, five were queer, four gay, three bisexual, two lesbian and one polysexual. None identified as Aboriginal and/or Torres Strait Islander. English was the first language of all participants.

Procedure

Data collection took place in 2020, at a time when strict physical-distancing restrictions were enforced in response to the COVID-19 pandemic. As a result, all interviews were conducted online, by way of Zoom, a video-conferencing application. Only the audio element of the recording was retained after the interview, the contents of which were transcribed. Interviews generally lasted for between 60 and 90 min. Interviewees were asked questions relating to three main themes: the nature of informal mental health support they provided; their lived experience of providing such support; and what might help them more effectively perform caregiving roles. Due to the nature of the topics discussed, the research team developed a comprehensive support protocol to follow in the event a participant became distressed. This did not need to be deployed. Transcripts were deidentified and pseudonyms assigned to participants.

Analysis

Transcripts were analysed using NVivo. The first (SW), second (AW) and sixth (AB) authors analysed the data without notable discrepancy. The number of interviews − 25 – was conducive to data saturation (Guest, Bunce, and Johnson 2006; Dworkin 2012), which was observed by the authors during analysis. Using the principles of thematic analysis (Braun and Clarke 2006), we adopted an inductive approach, identifying three broad themes in the data. These related to how participants viewed their informal care roles as meaningful and why. They could be broken down broadly into the categories of community, relationships and individuals.

Findings

Informal mental health support as meaningful caregiving

Participants reported various situations in which they had provided informal mental health-related support to fellow LGBTQ community members. Many described an openness about talking about mental health and suicidality within their communities, which included the widespread perception that distress levels were high and that support options were limited. This helps to explain why many participants were willing to be there for their fellow community members and saw themselves as caregivers. Participants had assisted others as trusted friends, partners, housemates, leaders of LGBTQ community groups, friendship groups, ‘helping professionals’ (who worked in the mental health field) and ‘friends of friends’.

Some participants had supported many people in acute situations, while others had supported fewer with chronic mental distress over a longer period of time. The participants were helping people who were experiencing mental distress, including depression and anxiety. Some of those supported had self-harmed, were considering or had attempted suicide, and/or were experiencing issues with alcohol and other drug use. Support occurred outside the formal mental health and health systems, but sometimes intersected with them. For example, some participants assisted someone after they had attempted suicide and were hospitalised, while others helped peers to access professional help in the first instance.

Participants conceptualised their informal mental health support roles as meaningful in multiple ways. They derived meaning from their informal support roles in ways relevant to their identities, their relationships and their communities.

Meaningful in terms of self

Many participants said providing support to a fellow community member in distress was a meaningful experience. They expressed this in relation to feeling a sense of purpose, recognising their capacity to help, and being inspired to use their past experience of adversity to share wisdom.

Some participants felt that being there for another person gave them purpose. Several components underpinned this, including a ‘good’ feeling that came with providing the support, a feeling of being a ‘good person’ for being there for others and satisfaction at having fulfilled an obligation to fellow community members who needed it.

Being the carer, for want of a better word, gives me a sense of belonging and purpose … If I provide you with care, that means that you feel better, which means that I feel good because I’ve done a good thing. I think that’s the basis of it. (Maria, gender queer)

Others expressed their sense of purpose in terms of the support they provided to fellow LGBTQ people experiencing mental distress. One participant said they enjoyed ‘feeling needed’ [Devon, trans], while another [Jayden, gender diverse] said that providing support to others ‘helps me to feel useful sometimes’. This same participant acknowledged that they felt an obligation to help others but tried to separate that obligation from notions that informal mental health support was a burden to them, saying: ‘It’s not a responsibility, but just something that you need to do’.

Many participants recognised that their skills, experience and knowledge could make a difference to fellow community members. This compelled them to be there for others who needed support.

If I’ve got information that I think is valuable, and an opportunity arises for me to give that in a constructive way, I’m absolutely going to do that, because I’ve learnt that the information that I have [is] valuable and I believe that other people should have it. (Luke, cisgender man)

Although recognition of their skills, experience and knowledge heightened some participants’ sense of obligation to help fellow community members experiencing mental distress, some who did so recognised that their capacity to help was not stable but variable.

It feels different at different times. A lot of the time I feel privileged to be someone that they consider safe enough to talk to. Sometimes it’s feeling privileged and also feeling maybe tired or exhausted myself, depending on the content, the time of day, the kind of week that’s occurred. (Lisa, cisgender woman)

Some participants had learned that being there for others had to be something that they carefully managed – if circumstances allowed it – so that their capacity to help was not eroded:

It’s not best practice to insert yourself fully into someone’s life and give them all the support … What happens if that’s not sustainable basically because you’ll burn out? And I know that – but in practice it’s just really, really difficult sometimes to draw those boundaries. (Kelly, cisgender woman)

Many participants were also inspired to help fellow LGBTQ community members because they knew what it was like to experience mental distress. Some talked about their own experiences of depression, anxiety, trauma and suicidality, and how valuable these experiences were when it came to helping others.

I used to self-harm when I was younger and so, if there is an opening to talk about that with this person, I will talk about my own experiences and relate that to them and say, Look, I can help you. (James, trans man)

Another factor influencing the support provided by participants who had experienced mental distress in the past was a sense that their lived experience could help them create a non-judgemental space for a fellow community member in distress and be part of a culture of paying back the support they had received from someone else:

When you’ve been through something, you have the ability to role model for other people or have the ability to understand other people … You’re not going to judge them, there’s no discrimination, you’re just going to be there for them. (Alex, gender diverse)

Meaningful in terms of relationships

Participants derived meaning from helping people who were important to them. They were concerned for the wellbeing and safety of partners, friends, housemates and fellow community members experiencing mental distress. However, participants also found meaning in their care roles in ways that related to the relationships and friendships themselves.

In its most overt and profound way, the value of informal caregiving for many participants lay in its ability to save lives. Many had assisted someone who was experiencing suicidality. For some, this was a common experience. One participant – who said they had helped dozens of people experiencing suicidality – said:

I certainly have friendships where there have been moments where we’ve had to sit the person down and make sure they’ve got all the suicide numbers like helpline numbers in their phone contacts and check in on them every day. (Drew, trans)

The same participant spoke of the importance of being there for others in terms of how affirming, if sometimes difficult, it was:

Definitely being able to look after each other before something worse happened like a person dies, that is quite beautiful even though it’s quite difficult and taxing in its own way. (Drew, trans)

Participants helped individuals and, in doing so, also helped themselves; they had an interest in protecting and strengthening their own relationships:

It makes you feel like a good friend and you’re doing the right thing by someone you care about by supporting them. In a selfish way, it makes your life better because you have friends who are happy and they’re much more fun to hang out with than friends who are unhappy. [Declan, cisgender man]

Such a situation might also be considered in terms of the benefit to the individual supported, their relationships and the community more broadly:

I’ve got some friends who are in good places now … I’ve got friends who’ve been depressed and have come through depression and have nice jobs and settled down and … [are] happy and comfortable and where they want to be. (Frankie, gender queer).

Such an account demonstrates how vested participants were in the mental health outcomes of others in their social circles. Compassion seemed to drive this interest. That said, informal support also helped strengthen some relationships:

In those instances, [friends] who have needed some support or they’ve talked to me about not doing too well, I’ve felt closer with them … connected with them and I feel like I’ve been a good friend as well. (Lisa, cisgender woman)

On the other hand, not all friendships and relationships survived situations in which one person was providing mental health support to another. The toll of helping someone, for some participants, became too much:

I just had to stop engaging … I don’t at all regret that decision. That was absolutely the necessary and correct decision, but it still is kind of miserable that my only option in that situation was kind of just leave her to suffer. (Kristen, trans woman)

Some participants spoke about ‘turning up’ for others despite their limited capacity to help. Contributing to participants feeling limited in what support they could provide were the seriousness of the situation, the relationship dynamics involved, the participants’ caregiving abilities and resources, and other responsibilities in their lives.

Relatively few participants had received mental health training or qualifications. Some felt stretched by the demands of others and the responsibilities they had taken on. One of the motivations for participants to keep turning up was the concern – or even fear – that the person experiencing mental distress had no other way of being supported.

Meaningful in terms of community

Participants also viewed their informal mental health support roles in terms of LGBTQ communities. Many spoke about the importance of helping individual community members themselves and the value that had on wider communities. Being there for a person experiencing distress was participants’ paramount concern. Driving this, though, was often a desire to support LGBTQ community members more generally, including ones they did not know well or at all. Several participants, for example, provided informal mental health support to people through their involvement with walk-in LGBTQ community groups.

This demonstrates the respect many participants had for the wellbeing of fellow LGBTQ community members. Elements of this were grounded in participants’ own experiences of growing up LGBTQ and not finding the support they needed. Others wanted to give back to the community by replicating the support they had found in the LGBTQ community as a younger person.

Some participants viewed their work as strengthening LGBTQ communities. Participants respected what communities stood for, what they had overcome and the challenges they continued to face. Being there for fellow community members experiencing mental stress contributed to unity. Participants also understood how societal factors such as discrimination and stigma towards LGBTQ people contributed to mental distress.

Mental health was talked about openly in LGBTQ communities, participants said, and so being there for others was seen not only in terms of helping an individual but helping the community. This sense of supporting others had a communal feel, as one participant described:

There are some core individuals that have been of great support and what I recognise about them is that they, too, are in similar roles to me. They’re individuals who support a lot of other people. (Devon, trans)

Participants recognised the value of their communities providing so much informal mental health support to LGBTQ people who needed it:

The power the queer community has to support themselves is phenomenal … I feel like they’ve already saved the government a lot of money because the way they all help each other out is just so wonderful … maybe that’s something that could be harnessed. (Anastasia, cisgender woman)

More recognition from the government of the importance of informal support was something that some participants believed would help.

One interviewee [Kristen, trans woman] said ‘switched-on’ members of the community realised their care roles were not only vital to the individuals whom they supported, but also an important part of a bigger picture in which mental distress disproportionately impacted LGBTQ communities:

They all think about society … [they’re] more likely to identify with that kind of label of peer support rather than, ‘I’m just sticking up for my friends’ or whatever. (Kristen, trans woman)

Some participants felt that being an LGBTQ community member meant being an informal caregiver – to varying degrees – by default. This was especially the case for community members in the helping professions:

I think it’s almost like when you’re in the community, you’re automatically a possible temporary counsellor … It’s like you can find this stuff online, but people still go to someone they know, they want to try and, they want to connect to a human being. (Devon, trans)

Challenges of providing meaningful support

Regardless of how meaning was to be found in informal mental health peer support, a recurring theme in the interviews was that much of the work undertaken by peer support was unsustainable. This was not always stated overtly; often, it was implied in a participant’s description of experiencing burnout, retreating from their community, or losing a meaningful relationship.

Participants not infrequently provided care in their own time and without remuneration. They provided it in conjunction with – or in conflict with – their other responsibilities. Many situations fitted the definitions of caregiving outlined in the introduction to this paper. Care situations over long periods of time were demanding on participants, especially when the challenges seemed unresolvable. For some, it was the uncertainty of what to do that challenged them most.

I’m always worried that there is going to be something that’s going to come up and I’m just going to go ‘I don’t know what to do about this’. (Taylor, gender diverse)

Such experience underscores the need for this type of caregiving to be better valued and those providing it better supported. As one participant said:

I don’t think that the broad mental health profession actually considers the work that I do, and people like me do, as work. I just think they think of it, ‘Well, you’re just chatting with a friend’ … The value of peer support within communities needs to be more acknowledged by the mental health professions and valued by them and by government who funds mental health work, as a thing that is actually really useful for communities. (Ingrid, cisgender woman)

Despite these challenges, however, many participants persevered in their caregiving roles. Other participants, however, stepped back from providing support due to its impact on their own mental health.

Discussion

Participants’ accounts provide insight into how crucial informal mental health support is to LGBTQ people experiencing mental distress, most importantly in situations where someone is at risk of attempting suicide. These accounts also demonstrate how meaningful such support is for community members who have provided is. Participants described drawing meaning from their caregiving in ways that spoke to notions about their own selves (their sense of purpose, their capacity to help and their history of adversity), their relationships (saving lives, saving relationships and ‘turning up’ for others) and their communities (strengthening LGBTQ communities, helping peers and being part of a strong community).

Informal caregiving for participants was infused with meaning that transcended individual care situations and was indicative of broader service and societal challenges that LGBTQ communities face, and their success in responding to them through solidarity. It is important to consider how such solidarity may have been shaped by previous public health issues, such as the AIDS crisis of the 1980s, when LGBTQ community members mobilised in the absence of state-led care (Catungal et al. 2021) Yet, the importance of informal mental health caregiving and the meanings participants derived from rising to the occasion did not offset the fact that many were often engaged in roles that were challenging, draining and even unsustainable, demonstrated by burnout and strained relationships.

Meaning derived from informal mental health support may carry people forward and unite communities. It might inspire them to push on, despite the challenges. The question, then, is how can such support, which is meaningful to individuals, relationships and communities, be fostered as something more sustainable? We address this question by proposing three important steps forward. The first is affirming how meaningful participants considered their informal support roles to be. The second is expanding the definitions of ‘caregiver’ and ‘caregiving’ in an LGBTQ context. The third is supporting people in LGBTQ communities who provide care.

Acknowledging informal mental health caregiving as meaningful within an LGBTQ context

Participants’ accounts of providing mental health-related support to peers demonstrate the importance of informal caregiving. Such work is meaningful beyond the people involved. Its effects are felt across LGBTQ communities. It is also emblematic of the strength of LGBTQ communities in attempts to overcome adversity – in this case, higher levels of mental distress and barriers to service access.

The first step towards making this type of support more sustainable is acknowledging its importance. Celebration of the relative success of this type of support, however, is not enough to make it sustainable. Supporting people to continue in their roles and to better perform their roles would be beneficial. Strengthening choices is also important: the choice to be involved, to retreat, to function without burnout, and to not be the ‘last resort’ for someone considering suicide.

Expanding definitions of ‘caregiver’ and ‘caregiving’ in an LGBTQ context to include multiple partners, housemates, peer leaders and friends

Helping make informal mental health support in LGBTQ communities more sustainable requires further conceptualisation of what exactly it is. In this respect, it may be useful to develop a more sophisticated understanding of ‘caregiver’ and ‘caregiving’ in an LGBTQ context. Previous research by the authors of this paper has demonstrated the different roles that participants perform when providing informal mental health support to peers. These roles include The Safe Friend, The Partner, The Peer Leader, The Help Worker, The Housemate and The Friendship Circle member (Worrell et al. 2022). Some of these roles – such as The Partner – neatly fit standard definitions of a caregiver. But all have qualities emblematic of LGBTQ communities. The Partner, for example, may be one of multiple partners someone being supported has. The Friendship Circle member may be part of a network of people providing support who is doing so due to their experience of suicidality, which is higher in LGBTQ communities, and the negative effects of living with internalised stigma.

Both individually and together, these roles push the boundaries of ‘caregiver’ and ‘caregiving’ definitions, challenging gendered and heteronormative assumptions about what care is and who provides it. Yet, research on LGBTQ ageing shows that friends and partners already contribute to a substantial part of caregiving for those who need support and perform similar duties (Hughes and Kentlyn 2011; Muraco and Fredriksen-Goldsen 2011; Shiu, Muraco, and Fredriksen-Goldsen 2016; Waling et al. 2022;). Peers providing mental health support fulfil existing definitions – participants in this study performed unpaid work outside of professional settings that supported a person’s mental, emotional and physical health. Recognising the diversity of informal care and caregiving experiences that already exist would be a step towards better understanding how LGBTQ communities derive meaning from caregiving roles.

Better supporting people who perform informal mental health care roles in LGBTQ communities

Society recognising LGBTQ people who provide support in ways that strengthen their capacity to continue in their roles.

There are two things to consider here. First, recognising participants in this study as people who are ‘caregiving’ may help some of them relate more fully to existing resources for caregivers. This may have the effect of reducing social isolation, as the person becomes more aware of other caregivers’ experiences and the support and options that are available to them. Reducing the isolation of LGBTQ caregivers may also help to lessen the self-stigma that can come with caregiving for someone with a mental illness (Girma et al. 2014). This could help make care roles more sustainable.

Second, caregivers could be helped to better define the parameters of their involvement. Rather than LGBTQ community members feeling like they are the only option for peers experiencing mental ill health and suicidality, service providers and policymakers could build safer and more robust systems for LGBTQ people. Informal mental health support in LGBTQ communities is meaningful for those who provide it. Meaningful caregiving has a place in a mental health system that more robustly supports LGBTQ people experiencing mental distress. Reaching such a point, however, would require public authorities to ensure that caregiving is sustainable, not overburdening, and performed in conjunction with adequate mental health services (rather than as a substitute for them).

Conclusion

We should not be in a situation in which rates of mental ill-health are so high among LGBTQ communities nor one where professional mental health services do not provide high-quality LGBTQ-affirming care at the scale required. But until change is brought about in this structural and service landscape, it is important to recognise the vital role played by peers in providing mental health support.

Informal mental health caregiving in LGBTQ communities is valuable for those who receive it and meaningful to those who perform it. However, while it may provide a crucial element of mental health support for this community, it can also be unsustainable, leading to burnout, loss of relationships and friendships and self-imposed social isolation. Expanding definitions of ‘care’ and ‘caregiver’ in an LGBTQ context and better supporting caregivers would be an important step towards making informal mental health support more sustainable.

Valuing informal mental health caregiving in LGBTQ communities is not just about recognising that caregivers have meaningful experiences. Rather, more must be done to support not only the person receiving help but also informal caregivers themselves. Empowering caregivers to perform support roles with more agency and more access to respite, including in conjunction with mental health professionals, would help prevent burnout and encourage more sustainable forms of caregiving.

Acknowledgements

We thank the LGBTQ community members who participated in this study for sharing their lived experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

We thank North-Western Melbourne Primary Health Network for funding this research and members of the study’s community advisory board for their valuable input.