Expert by Experience engagement in gambling reform: qualitative study of gamblers in the United Kingdom

Abstract

Summary To explore how Experts by Experience (EbyE) conceptualize key priorities for preventing and reducing gambling-related harm in the United Kingdom (UK). To identify barriers and facilitators to EbyE engagement in decisions for gambling research, education, treatment (RET) and policy development. Qualitative study utilizing semi-structured interviews with 20 participants from the UK between March and July 2020. Gamblers aged 29–60 years who self-reported that they had experienced gambling-related harm, and who actively used their experiences to inform strategies to prevent and reduce gambling-related harm in the UK. Participants were motivated to: advocate for gambling reform, and raise awareness of their experiences of gambling addiction or disorder. Gambling regulation was described as not adequately keeping pace with gambling industry practices, with initiatives needed to prevent the harms associated with product design, how individuals engaged with products and marketing practices. The reliance on voluntary contributions by the gambling industry for RET was perceived as a potential barrier to reform. Participants recommended new independent structures which engaged EbyE in meaningful ways in contributing to decision-making. An independent body run by and for EbyE was one mechanism that participants perceived could represent the voices of those impacted by gambling-related harm. Individuals with a lived experience of gambling-related harm, including affected social network members, bring a range of unique experiences and perspectives, and should be seen as valuable stakeholders in co-producing strategies to prevent and reduce gambling-related harm.

Transferable learning about patient and public involvement and engagement in gambling support services from health and social care: findings from a narrative review and workshop with people with lived experience

“…Participants in the workshop expressed the wish that this should be an independent organisation. This echoes the findings of a recent UK qualitative study (Nyemcsok et al. , 2021) involving 20 experts by experience engaged in informing strategies to prevent or reduce gambling harm.…”

“…, 2021) involving 20 experts by experience engaged in informing strategies to prevent or reduce gambling harm. Here their participants concluded that experts by experience should be seen as valuable stakeholders in co-producing support strategies to reduce gambling harms and also recommended new independent structures as a potential mechanism for representing people affected by gambling related harms (Nyemcsok et al. , 2021).…”

Women's perceptions of strategies to address the normalisation of gambling and gambling‐related harm

“…Relevant qualitative research has primarily focused on the perspectives of professional key informants, 18,19 young people and their parents 20 and people who have specifically experienced gambling problems or harm. 21,22 Understanding the perspectives of different population subgroups that engage in gambling is critical in informing the design of transformative public health and health promotion strategies.…”

Young people in Australia discuss strategies for preventing the normalisation of gambling and reducing gambling harm

“…The findings from this study demonstrate that young people are capable of discussing strategies that could reduce the normalisation of gambling and prevent gambling related harm. It is important to recognise that strategies recommended by young people in this study are similar to de-normalisation and harm prevention strategies that have been endorsed by public health experts, key stakeholders, and those with lived experience of gambling harm [47][48][49]. For example, there is clear support within the public health community for reducing the accessibility and availability of gambling products in communities, specifically a reduction of EGM licences and gambling venue opening hours [31,48].…”