News Articles and analysis

Caring for carers in LGBTIQ communities

More needs to be done for carers in LGBTIQ communities, writes Gabriel Aleksandrs from Drummond Street Services.

Studies show that carers have poorer health, wellbeing and participation outcomes than the general population. Likewise, research identifies higher rates of psychological distress amongst carers (including former carers).

The Victorian Carers Recognition Act 2012 recognises care relationships as those in which a person receives primary support or care from another, due to living with a disability, being older, having a mental illness or an ongoing medical condition (including terminal or chronic illness or dementia).

It is estimated that over 13 per cent of Victorians are carers. However, many carers are hidden, due to: preferring to identify with other relationship characteristics (such as parent, sibling or partner); not telling people about their care responsibilities for a range of reasons (including confidentiality of the person receiving care); or because services don’t identify them as a carer. Services might also fail to identify carers as being from a particular cohort; for example, Aboriginal and Torres Strait Islander peoples. Consequently, the prevalence of care relationships in specific marginalised communities is often not counted accurately or considered.

Despite recognised poor physical and mental health outcomes among carers, there has been little investigation into whether or how services might respond to improve these outcomes. This is a significant issue for people in LGBTIQ communities. There are higher rates of poor mental and physical health and disability among LGBTIQ people, suggesting that many will have an increased chance of needing informal care from a friend, partner or family member over their lives. Therefore, insufficient service responses impact a potentially large number of LGBTIQ people in care relationships.

These and other issues prompted a collaborative study in 2017 between Carers Victoria and RMIT University entitled ‘Experiences of carers of LGBTIQ people living with mental illness’. Professor Jenny Martin, Anne Muldowney, Meredith Butler and I set out to examine the experiences of informal/family carers of people from LGBTIQ communities living with a mental illness or experiencing a mental health crisis. One goal of the study was to look at issues of conflict and safety in relation to carers’ interactions with a range of mental health service providers.

Research data was gathered via an online survey and focus groups. The Safewards model, originally developed in the UK, recognises six domains where conflict might arise. The study data was analysed against this model, with new categories of ‘carer characteristics’ and ‘carer modifiers’ applied for the purposes of our study.

In addition, participation in the study was targeted to carers who had been in contact with mental health services since the Victorian Mental Health Act 2014 was introduced. This was to improve our understanding of carer experiences of the Act.

The outcomes of the study emphasised important considerations, political sensitivities, and new opportunities for mental health service providers to learn from the experiences of people providing support to LGBTQ1 community members.

The study outcomes showed many participants’ experiences of mental health services were shaped by conflict. These findings complement existing research which found that LGBT people’s experiences of discrimination can extend to mental health services and that distrust of services  can result from heteronormative practices; or, in other words, the assumption that all consumers are heterosexual. These issues are not helped by a historical lack of LGBTIQ inclusion in key State and Federal mental health and suicide prevention strategies, policies and frameworks. Our research confirmed that conflict triggers tend to occur between carers and staff when staff don’t understand the issues faced by LGBTQ communities.

A recent article on the study outlined some of the outcomes in more detail. In summary, the following considerations were highlighted:

  • an expansion of the Safewards model to include carers may be useful to further improve practices in mental health inpatient units, as well as mental health services broadly
  • informal/family carer characteristics within LGBTQ communities are complex and can play a critical role modifying tensions and misunderstandings that may arise when a person being supported experiences a mental health crisis
  • carer stress and difficulties were intensified by heteronormative assumptions and insufficient staff understanding of additional factors of fear, discrimination, vulnerabilities, and risks faced by people from LGBTQ communities
  • more research is needed on informal/family carers of people in LGBTQ communities living with mental illness or experiencing a mental health crisis, including how to best support these carers.

As Victoria commences processes for a Royal Commission into Mental Health it is important to consider the health and wellbeing of LGBTIQ communities. However, it is also crucial to explore correlations between LGBTIQ communities (alongside intersectionalities of experience such as faith and cultural background) and the likelihood of either receiving or providing informal care. This can support the visibility and identification of care relationships, so people may be supported in ways that enable independence, choice, optimal health and positive experiences of Victoria’s mental health service system.

Gabriel Aleksandrs is the Senior Policy and Strategic Manager at Drummond Street Services.

 

Footnotes:

  1. No-one being cared for was recorded as intersex. Accordingly, the study results pertain only to people being cared for from LGBTQ communities unless carers referred specifically to intersex people in their responses. Other LGBT or LGBTQ acronyms are used to correspond with references.