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Grief in HIV/AIDS related death

Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have challenged society over the past four decades. Issues for HIV positive people are complex and may complicate processes of grief, public expressions of mourning and post-death healing.

Attitudes To People Who Are HIV Positive

The outlook for someone with a diagnosis of HIV has changed considerably since the beginning of the epidemic in the 1980s. At that time, almost all infected people died from AIDS-defining illnesses resulting from the impact of HIV on the body’s ability to fight infections.

With anti-retroviral drugs, there is now a low rate of progression from HIV to AIDS. HIV-positive people are no longer primarily dying of AIDS-defining illnesses, but are much more likely to succumb to conditions similar to HIV-negative people, such as heart disease, strokes and lung cancer.

Issues That Can Complicate Grief After HIV Positive Or AIDS Related Death

Social stigma and rejection: There is still a risk that people who are HIV positive are more likely to feel stigmatised and isolated. They may fear that their diagnosis will cause judgmental behaviour, rejection and abandonment. This often means that very few of their family and friends (perhaps no one) will know the true cause of their illness. This added isolation and lack of support can add to their emotional and spiritual pain. Social stigmas associated with HIV have been identified as one of the stressors that may influence the increased suicide rate in HIV positive people.

Multiple losses and unresolved past grief issues: In the earlier days of the epidemic, some people reported losing 10 or more friends from their social network to AIDS-related illness. For individuals who experienced multiple losses of this kind, grieving may become an ongoing experience.

The nature of AIDS: HIV is an infectious disease and so there are risk-management requirements in hospitals which can be distressing for patients and families. The nature of the illness itself may also cause distress.

Parental rejection: Some parents who are unaware of their child’s sexuality can sometimes learn of this at the same time as hearing a diagnosis of their child’s HIV positivity. In some cases, these parents may be afraid of rejection from their community and feel they are unable to share their story with anyone. They may grieve in silence and their own fear of AIDS may complicate their grief.

Unacknowledged grief of same sex partners, lovers and friends: If the relationship has not been recognised as legitimate beyond a small circle of friends, the grief of the surviving partner may not be acknowledged. The person may have formed a social group that functions as a substitute family- a “family of choice”. Many homosexual communities have developed meaningful social or spiritual rituals for making life transitions in the context of HIV/AIDS. With the legalisation of same-sex marriage and society’s wider acceptance of homosexuality, this may become a thing of the past.

Remote biological families: Either by choice or because of distance, remote families may complicate the care and grief of all involved. Sometimes after a death the biological family may take over, and the “family of choice” may be excluded from the funeral and arrangements around the death.

Substance abuse: Adequate pain relief in the end stages of life is important to maintain quality of life for both the dying person and the loved ones involved. Often large doses of pain-relieving medications may be required for patients with a history of drug use, and family and friends may need support to understand these issues.

Issues For Carers

The prognosis, treatment and recurrence of HIV and AIDS-related illnesses vary. People may appear to be at the end of their life many times. The up and down course of the illness challenges both professional and non-professional care providers.

Carers, who may often be partners as well, may become depleted by the energy used in anticipatory grief. On the other hand, giving up the carer role is often experienced as a major loss of identity.

Other Resources

Positive Life SA Inc

Provider of information, advocacy, and support to HIV positive people across South Australia.

Beyond Blue

Provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.


Page last updated: 29 December, 2021