‘Nothing about us without us’: first-hand experiences help reduce gambling harm

by Patrick Gallus

The power of personal stories to influence responses to gambling harm was highlighted during a Gambling Harm Awareness Week event that focused on the findings of three early-career researchers whose studies looked at distinctly different communities.

Stories of personal experience inspire hope and drive change. These concepts were at the heart of the online event, Gambling harm is complicated: understanding our diversity of experiences, at which the research was launched.

Carmel understands intimately the range of harms gambling can cause, as well as the importance of learning from the experiences of those affected.

She is an affected other and co-researcher on a study led by Australian Catholic University’s Dr Aino Suomi that has developed principles for engaging with people with lived experience, and a practical evidence-based framework and toolkit for doing so when developing research, programs and policy.

‘Nothing about us without us – it’s important to include people with lived experience,’ Carmel said.

The study used collaborative co-design processes and involved 10 co-researchers with lived experience of gambling harm, either directly, or as a friend or family member of someone who gambled.

The study … involved 10 co-researchers with lived experience of gambling harm.

‘There is now a growing interest in engaging with people with lived experience of gambling harm in more meaningful ways – in terms of research, policy development, and intervention development – but there’s very little evidence-based guidance in how to do this in a way that is not tokenistic or insensitive,’ Aino said.

Together, the group developed nine key principles, including recognition of the unique point of view people with lived experience bring; the value and authority of their experience; and the importance of engaging with them at all levels of decision making.

La Trobe University’s Dr Andrea Waling was part of a team that investigated the gambling experiences of LGBTQI+ people, and found that gambling culture and environments are broadly heteronormative.

‘What we mean by that is those spaces are focused on a particular gender identity, usually men, and a particular sexuality, usually heterosexual,’ Andrea said.

From interviews with LGBTQI+ health services and mainstream gambling support organisations, the research team found that while LGBTQI+ people had higher risk factors for experiencing harm, including higher levels of both mental ill-health and substance addictions, they had less access to gambling and were more likely to gamble in places that were considered ‘safe’.

‘…those venues can be very masculine, be engaged in certain ideas about gender identity, and more likely be homophobic.’
^{Dr Andrea Waling}

‘LGBTQI+ people were more likely to visit EGM [pokies] venues or buy lotto tickets than visit a more traditional sports bar or sports betting venue, because those venues can be very masculine, be engaged in certain ideas about gender identity, and more likely be homophobic,’ Andrea said.

Commonly, gambling was used to combat negative feelings: loneliness, isolation and discrimination. It was also a way to relax, get an endorphin kick and escape from normal life.

The researchers recommended targeted supports for people in this little researched community who experience gambling harm, including tailored campaigns and LGBTQI+ cultural awareness and safety training for healthcare providers.

People with an intellectual disability exhibit many of the characteristics of other groups known to experience gambling harm – they may have lower incomes, receive welfare payments and experience social isolation.

Research led by Deakin University’s Dr Hannah Pitt involved speaking with people with an intellectual disability about their experiences of gambling, as well as their support people.

‘Most commonly people had experienced gambling on the pokies, and while some had gambled on their own or with friends, most people gambled with their families at pubs or clubs,’ Hannah said.

…gambling was like a smoking habit: risky, addictive and difficult to give up.

All could describe the benefits of gambling, including that it was fun, social and could involve winning money. However many were also quick to describe the negatives – financial losses, relationship breakdown, losing your home, addiction.

One participant said they felt gambling was like a smoking habit: risky, addictive and difficult to give up.

Many of those interviewed knew the phrase ‘gamble responsibly’, but were unsure what it meant. Many others said they set financial or time limits to stay in control of their gambling and protect against gambling harm, but did not acknowledge they could still be at risk.

There was a perception that treatment services in general were limited and that these would be more difficult for the intellectual disability community to access. They suggested it would be beneficial for people with an intellectual disability, their supporters, and the wider community to have access to more, and easy-to-understand, information and education.