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Quality of life among people with HIV

Quality of life (QoL) means different things to different people depending on their culture, goals, and expectations. It can include aspects of health, relationships, community, and opportunities, as well as a sense of purpose, confidence, and optimism. QoL is also impacted by factors such as economics, environment, human rights, and racism. Overall, it adds up to a sense of ‘living well’.

For people living with HIV, QoL includes the same things as for anyone else. However, it can also include the challenges of living with a virus that continues to create uncertainly, fear, and stigma.

QoL is central to the care and support of people with HIV. People with HIV who are on treatment can achieve good health and a similar life expectancy as anyone else. This can significantly enhance their QoL. However, QoL can impact a person’s ability to access and maintain treatment or manage life with HIV.

To pursue QoL, a person living with HIV needs access to high quality, comprehensive, and non-stigmatising support and services for their whole person.


Quality of life and health-related quality of life

The World Health Organization (WHO) describes a person’s QoL as their perception of their position in life:

  • in the context of the culture and value systems in which they live and
  • in relation to their goals, expectations, standards, and concerns.

QoL is often used interchangeably with the term, health-related quality of life (HRQoL).

Like QoL, HRQoL is a broad-ranging concept. However, HRQoL focusses more specifically on how a person’s health status impacts on their overall QoL.

When we talk about QoL among people with HIV, we are often referring to HRQoL.


Quality of life among people with HIV

Many national studies have found that people with HIV report lower QoL than those without HIV.

In part, this can be due to adverse physical health effects of the virus itself.

But HIV treatment has come a long way since HIV was first identified. Treatments are now so effective at controlling the virus that many people on treatment can achieve an undetectable viral load (UVL).

People with HIV who have a UVL enjoy the same level of physical health and life expectancy as HIV-negative people. On top of these benefits to physical health, people with a UVL cannot transmit HIV to an HIV-negative person (colloquially known as U=U).


Impacts of HIV-related fear and stigma on quality of life

Despite all of this, stigma and fear still affect many people living with HIV. As a result, a person with HIV may face discrimination in many settings, including:

  • healthcare services,
  • communities,
  • workplaces,
  • educational settings,
  • justice systems, and
  • during humanitarian emergencies.

As more and more people with HIV access and take treatment, QoL is less and less commonly impacted by direct effects of HIV on physical health. However, stigma and discrimination continue to have a strong negative impact on QoL through contributing to:

  • higher rates of depression, anxiety, and emotional and mental distress;
  • riskier sexual practices;
  • lower likelihood of taking HIV treatment effectively;
  • poorer physical health;
  • lower rates of social support; and
  • lower access to and use of health and social services.

For those working in health and social service settings, understanding these impacts of stigma and discrimination is vital to providing high quality care. Using health-related quality of life measures when working with clients and patients with HIV can improve the quality of the care given and lead to better health outcomes.

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