PozQoL used to explore quality of life in Aotearoa New Zealand

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The PozQoL Scale was used to measure quality of life among people living with HIV in Aotearoa New Zealand as part of the country’s first implementation of the People Living with HIV Stigma Index

This peer-led research project was the first of its kind in Aotearoa New Zealand. It aimed to explore how stigma and social factors shape quality of life for people living with HIV. The study involved 188 participants from across the country and used PozQoL to provide structured, HIV-specific insights that extended beyond clinical measures like viral load. It marked the first time a validated quality-of-life tool had been used in this context, offering a new way to understand and respond to the experiences of people living with HIV in New Zealand.

🧩 Why PozQoL was chosen

• Validated tool
  • PozQoL is grounded in psychometric validation, ensuring reliable assessment across its four domains — psychological, social, health, and functional wellbeing.
• Brevity with depth
  • Its 13-item structure allows comprehensive yet user-friendly administration, making it suitable for both community-based and academic research contexts.
• HIV specificity
  • Tailored to reflect experiences unique to PLHIV, unlike generic quality-of-life tools.

⚙️ How PozQoL was used

• Peer-led and implemented
  • Peer interviewers used the PozQoL scale alongside a broader set of questions related to health, stigma, and social connectedness.
• Scoring approach
  • Each item was rated from 1 (“Not at all”) to 5 (“Extremely”).
  • Total scores ranged from 13 to 65, with higher scores indicating better quality of life.
  • Sub-scores were also calculated for each domain to highlight specific areas of strength or concern (e.g. social vs. psychological wellbeing).
• Data analysis
  • Scores were grouped into four categories: low, moderate, high, and very high quality of life.
  • Statistical analysis looked at how these scores related to other factors such as stigma, mental health, employment, and relationship status.

💡 What PozQoL revealed

• Stigma significantly lowered QoL
  • Internalised stigma, lack of recent sexual activity, and experiences of discrimination were strongly associated with lower PozQoL scores.
• Social isolation mattered
  • Participants who had not had sex in the past year—often reflecting social withdrawal—had significantly lower scores.
• Intersectionality in outcomes
  • Lower scores were also linked to recent diagnosis, unemployment, and mental health challenges. These findings reflect how multiple social and structural factors interact to affect wellbeing.
• Consistent cross-domain insights
  • PozQoL consistently showed how stigma, both internal and external, affected overall quality of life—particularly among newly diagnosed and non-European participants.

⚠️ Challenges and limitations

• Cultural relevance
  • Māori and other Indigenous or migrant participants noted that the tool may not fully reflect their understandings of wellbeing, such as whānau, whakapapa, and spiritual connection.
• Quantitative rigidity
  • Interviewers shared that PozQoL, while useful, couldn’t always capture the rich narratives that emerged in qualitative discussions.
• Sample bias
  • Most participants were connected to support networks. Those who are more isolated or marginalised may not be well represented—meaning the lowest quality-of-life experiences might be under-reported.

📌 Implications for research

• Strength
  • PozQoL is a concise, robust measure of HIV-specific quality of life. It’s well suited to identifying patterns and priorities across psychological and social domains.
• Cultural fit
  • Consider pairing PozQoL with culturally tailored tools or interviews, especially in First Nations or migrant contexts.
• Data synergy
  • PozQoL works well alongside other measures like stigma or mental health scales to explore what’s driving lower quality of life.
• Implementation
  • PozQoL can support program monitoring, service evaluations, and longitudinal tracking of wellbeing outcomes.

🧾 Conclusion

PozQoL helped the study look beyond clinical outcomes like viral suppression. While 95% of participants reported an undetectable viral load, PozQoL scores highlighted that this did not always reflect high quality of life. The PozQoL scale offered a structured way to capture and quantify the lived experiences of PLHIV in Aotearoa New Zealand, highlighting areas of wellbeing that may otherwise have been overlooked.

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This story was originally published on 14 September 2020 under the title ‘Aotearoa New Zealand study using PozQoL to help understand HIV stigma and discrimination’, authored by Dr Sue McAllister. It has been updated to reflect new developments.