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The PozQoL Scale was used in Aotearoa New Zealandās first People Living with HIV Stigma Index study
This peer-led research was carried out by, for, and with people living with HIV. Twelve peer interviewers spoke with 188 participants across Aotearoa New Zealand between July 2019 and September 2020. The study used the international People Living with HIV Stigma Index, alongside PozQoL, to better understand not only whether people had experienced stigma, but how those experiences related to wellbeing.
Why PozQoL was useful
The Stigma Index was designed to document stigma and discrimination. PozQoL added a structured way to look at quality of life.
This was important because clinical measures alone do not tell the whole story. In this study, all participants were taking antiretroviral treatment, and most reported an undetectable viral load. Even so, many participants described experiences of stigma, internalised stigma, isolation, mental health challenges, and uncertainty about disclosure.
PozQoL helped connect these experiences with quality of life. It gave the research team a concise, HIV-specific measure that could sit alongside questions about health, relationships, disclosure, stigma, discrimination, and support.
How PozQoL was used
Participants completed the 13-item PozQoL Scale as part of a broader interview, allowed the study to look at quality of life in a nuanced way. Rather than asking one broad wellbeing question, PozQoL helped show how different parts of life were affected.
The research team then explored how PozQoL scores related to social, health, and stigma-related factors. This included experiences such as recent HIV diagnosis, mental health conditions, unemployment, not being able to meet basic needs, lack of support after disclosure, and experiences of stigma or discrimination.
What the study showed
The findings showed that quality of life was shaped by much more than HIV treatment outcomes.
Quality of life was closely connected to social support, material security, health, and freedom from stigma. Many participants reported having strong connections to community, support networks, and advocacy. Most were members of a network or support group for people living with HIV, and many had taken action against stigma or discrimination in the previous 12 months. Higher PozQoL scores were associated with being able to meet basic needs, being employed, having good self-reported health, having support from people close to them after disclosure, and not reporting recent experiences of stigma or discrimination.
On the other hand, lower PozQoL scores were associated with negative experiences including recent diagnosis, poorer self-reported health, mental health conditions, unemployment, difficulty meeting basic needs, lack of support after disclosure, internalised stigma, and experiences of stigma or discrimination. One of the strongest associations was with deciding not to have sex in the previous 12 months because of HIV. The report discussed this in relation to internalised stigma, relationships, connection, and the ongoing impact stigma can have on peopleās ability to live fully.
These findings show the value of looking at quality of life in context. PozQoL helped illustrate that wellbeing is not only about individual health, but also about support, connection, confidence, safety, and the social conditions that allow people living with HIV to thrive.
What this adds to PozQoL practice
This study provides an example of PozQoL being used within a larger community-led research project. As part of a larger set of tools, PozQoL helped the research team interpret stigma and discrimination through the lens of quality of life.
For people considering PozQoL, the study shows that the scale can be used alongside other tools to explore how social experiences, service access, stigma, and support relate to wellbeing. It also shows how PozQoL can contribute to research that has practical implications for peer support, community services, health systems, and policy.
The findings supported calls for stronger investment in peer support, community welfare programmes, counselling, stigma reduction, and education for healthcare providers and the broader community.
Challenges and considerations
The study highlighted some important considerations for future PozQoL users.
One was cultural fit. The research article noted that PozQoL may not fully capture MÄori understandings of quality of life, including connection to whenua tÄ«puna (ancestral land), connection to marae (a MÄori meeting place and centre of community life), and whakapapa (genealogy and ancestral connections). The wider Stigma Index project also recognised the importance of Te Tiriti o Waitangi (the MÄori-language treaty that underpins CrownāMÄori relationships in Aotearoa New Zealand) and the need to better reflect MÄori realities.
For future studies, this suggests PozQoL may need to be used alongside culturally grounded approaches, qualitative interviews, or community-led interpretation, especially when working across different cultural contexts.
The study also had sampling limitations. Participants were recruited through community organisations, HIV clinics, pharmacies, and word of mouth. Many were connected to HIV services or support networks. This means the findings may not fully reflect the experiences of people who are more isolated or less connected to care and community support.
Conclusions
The Aotearoa New Zealand Stigma Index study shows how PozQoL can help bring quality of life into community-led HIV research.
By using PozQoL alongside the Stigma Index, the research team was able to look beyond treatment status and viral suppression. The scale helped show how stigma, support, social connection, health, and everyday life are connected to quality of life for people living with HIV.
For future PozQoL users, this study offers a clear example of how quality of life data can strengthen research when it is grounded in community priorities, interpreted carefully, and used to support action.
About the People Living with HIV Stigma Index project
This 2019ā2020 research was part of the Aotearoa New Zealand People Living with HIV Stigma Index project. It was led by Dr Sue McAllister, while a Research Fellow at the Centre for International Health and Leader of the HIV Epidemiology Group at the University of Otago. The study was implemented by, for, and with people living with HIV, following the Meaningful Involvement of People Living with HIV (MIPA) principle.
For more information, check out the full Stigma Index report and the research article published in AIDS Care.
This story was originally published on 14 September 2020 under the title āAotearoa New Zealand study using PozQoL to help understand HIV stigma and discriminationā, authored by Dr Sue McAllister. The original story was written while the study was underway and has been updated to incorporate the study’s findings.
