Skip to content

The consumer and carer perspective

Appendix A: Survey Methodology

To support the Commission’s role in monitoring and reporting on the progress of the Fifth Plan, including the planning and design of the Consumer and Carer Survey, a Fifth Plan Technical Advisory Group (FPTAG) was established by the Commission.

Survey design

FPTAG includes representatives from each state and territory government health department, the Australian Government Department of Health, the Australian Institute of Health and Welfare, the Safety and Quality Partnership Standing Committee, the Suicide Prevention Project Reference Group, the Mental Health Information Strategy Standing Committee and the Aboriginal and Torres Strait Islander Mental Health and Suicide Prevention Project Reference Group, and consumer and carer representatives.

To ensure high comparability between years, minimal changes were made between the 2019 and 2020 Consumer and Carer Surveys. Based on advice from the FPTAG, the following changes were made in the 2020 survey:

  • • An overarching screening question was added to the survey. It asked respondents if they or the person they care for had used mental health services in past 12 months. Only those who responded ‘yes’ were able to complete the survey.
  • • In Priority Area 1: Achieving integrated regional planning and service delivery, the 2019 survey asked about the frequency with which consumers had a say in the way their care was planned and delivered as a single question. In 2020, planning and delivery were asked about in two separate questions. As a result, comparisons cannot be made between years.
  • • Stylistic and language edits were made to questions to make the language simpler and easier to understand, and to better distinguish between questions asked of consumers and questions asked of carers.

The full survey can be found in Appendix B.

Survey administration

The survey was administered via the online platform Citizen Space and accessible on the Commission’s website from 16 March to 11 May 2020.

The survey was promoted via the Commission’s social media channels and targeted emails to Commission stakeholder networks.

In an attempt to improve the sample size and representativeness in 2020, additional organisations with a focus on groups that were underrepresented in the 2019 survey sample – youth, men, culturally and linguistically diverse communities and older people – were contacted and asked for assistance in distributing the survey among their networks.


Survey respondent characteristics

A total of 227 people completed the 2020 consumer and carer surveys (Table 1). Of these, 143 (63%) were consumers, and 84 (37%) were carers. The majority of respondents (65%) indicated that they, or the person they care for, live with a severe or complex mental illness as defined by the Fifth Plan.

The largest number of respondents came from New South Wales and Victoria. Most respondents identified as female (77%), and over half were aged between 35 to 54 (52%; Table 2). Nine respondents (4%) identified as, or cared for an individual who identified as Aboriginal or Torres Strait Islander.

Table 1: Respondent demographics, 2020

  Number of consumers (%) Number of carers (%) Total number (%)
Total 143 (63%) 84 (37%) 227 (100%)
Female 110 (77%) 69 (82%) 179 (79%)
Male 27 (19%) 11(13%) 38 (17%)
Gender diverse / transgender 4 (3%) 2 (2%) 6 (3%)
Prefer not to say 2 (1%) 2 (2%) 4 (2%)
Aboriginal and/or Torres Strait Islander 3 (4%) 6 (4%) 9 (4%)
Have or care for someone with a severe or complex mental illness 86 (61%) 61 (73%) 147 (65%)
State or territory      
NSW 48 (34%) 21 (25%) 69 (30%)
VIC 25 (24%) 30 (36%) 65 (29%)
QLD 24 (17%) 9 (11%) 33 (15%)
WA 13 (9%) 11 (13%) 24 (11%)
SA 16 (11%) 8 (10%) 24 (11%)
TAS 1 (1%) 1 (1%) 2 (1%)
ACT 6 (4%) 2 (2%) 8 (4%)
NT 0 (0%) 2 (2%) 2 (1%)

Compared to the age distribution in the general population, people aged 16-24 and people aged 75 and over were particularly underrepresented in the 2019 and 2020 survey samples (Table 2).

Table 2: Age distribution of survey respondents, compared to total population, 2020

Age group 2020 sample Australian Estimated Resident Population June 2019
16-24 4% 15%
25-34 16% 19%
35-44 21% 17%
45-54 31% 16%
55-64 16% 14%
65-74 10% 11%
75+ 2% 9%

Source: Australian Estimated Resident Population is sourced from Australian Bureau of Statistics, Australian Demographic Statistics, December 2019. Note: Percentages for Australian Estimated Resident Population data are based on people aged 16 and over, not the whole Australian population.


Analysis caveats

The following points should be considered when interpreting the results presented in this report:

    • • Percentages are rounded and therefore totals may not add to 100%.
    • • Not all respondents answered all survey questions. Results for each question is presented as a proportion of those who responded to it.
    • • Due to the small number of respondents, significance testing of results between years was not appropriate and was not conducted. Any apparent differences between 2019 and 2020 results are indicative only and may not represent a significant change.
    • • Priority Area 3: Coordinating treatment and supports for people with severe and complex mental illness and Priority Area 4: Improving Aboriginal and Torres Strait Islander mental health and suicide prevention both started with screening questions about experience of complex mental illness and Aboriginal and Torres Strait Islander status respectively – only results for those who responded ‘yes’ to the respective screening question were presented with the relevant questions.
    • • Survey respondents were gathered via an online convenience sample, rather than a random sampling method. As a result, the sample may not be representative of the broader consumer and carer population.
Aboriginal flag Torres Strait Islander flag

Acknowledgement of Country

The Commission acknowledges the traditional custodians of the lands throughout Australia.
We pay our respects to their clans, and to the elders, past present and emerging, and acknowledge their continuing connection to land, sea and community.


The Commission is committed to embracing diversity and eliminating all forms of discrimination in the provision of health services. The Commission welcomes all people irrespective of ethnicity, lifestyle choice, faith, sexual orientation and gender identity.

Lived Experience

We acknowledge the individual and collective contributions of those with a lived and living experience of mental ill-health and suicide, and those who love, have loved and care for them. Each person’s journey is unique and a valued contribution to Australia’s commitment to mental health suicide prevention systems reform.