Experiences of discrimination and positive treatment among people who support a person with a mental health condition: a nationally representative survey

PURPOSE: Stigma and discrimination compound the burden experienced by informal caregivers of people with mental illness, impacting their wellbeing. Prior caregiver stigma research has relied on qualitative or convenience samples, limiting knowledge of groups most affected. This Australian study is the first nationally representative survey of caregiver experiences of discrimination and positive treatment. METHODS: Participants (N = 2,164) were recruited from a probability-based online panel using stratified random sampling and weighting for age, gender, education, and language background. Descriptive statistics examined prevalence of stigma, discrimination and positive treatment experiences. Multiple regression models were used to assess sociodemographic differences in experiences and associations with psychological distress and wellbeing. RESULTS: Positive treatment experiences were common, with 67.9% (95% CI: 65.4, 70.2) of caregivers reporting understanding from friends and family and 59.6% (95% CI: 57.1, 62.1) feeling valued by the care recipient's treating team. However, 34.3% (95% CI: 31.9, 36.8) reported role concealment, and 18.8% (95% CI: 16.8, 20.9) unfavourable treatment at least sometimes. Positive treatment experiences were more prevalent among caregivers who were older or with higher levels of education, whereas experiences of discrimination were more common among caregivers from non-English speaking backgrounds. Women were less likely to conceal their caregiving role. Positive treatment was associated with lower distress and higher wellbeing, whereas discrimination was associated with higher distress and lower wellbeing. CONCLUSION: Despite encouraging levels of support, experiences of caregiver discrimination are common and impact on psychological distress and wellbeing. Multi-pronged strategies are needed to address inequities, strengthen peer support and caregiver-inclusive practice frameworks.