What is the impact of HIV on families?





The issue

In Europe, the number of people infected with human immunodeficiency virus (HIV) is increasing. More infections of heterosexuals are appearing, and young people and women are becoming more vulnerable. For these people, the introduction of highly active antiretroviral therapy (HAART) now allows them to live longer with HIV. Also, since antiretroviral therapy has reduced the risk of mother-to-child transmission of the virus, infected men and women can consider parenting, and HIV-infected children are living into adolescence. This synthesis examines how HIV influences family lives and how families deal with the disease.


Human immunodeficiency virus has a large psychological, physical and social impact on infected individuals and their families. Stigmatization worsens this impact: it hinders the prevention and treatment of HIV and hampers social support and HIV disclosure. The families most affected by HIV are characterized by low socioeconomic status, which includes such groups as drug users, migrants and asylum seekers.

The risk of transmitting HIV, which includes that of mother-to-child transmission, increases when people are unaware of their HIV infection, when they do not disclose their HIV status, when they do not have access to effective treatment and HIV care, and when they do not have access to family planning advice that addresses the issue of HIV.

The long-term aspects of living with HIV in the era of HAART need to be considered. New possibilities, such as parenting and care of children, need to be considered, and the difficulties in managing HAART (such as adhering to treatment, side-effects and optimal treatment regimen) need to be investigated further. Also, the inequalities faced by those living with HIV, such as obtaining or maintaining employment and life assurance, need to be addressed.

The psychological, physical and social needs of HIV-infected children and their parents need to be considered, especially the needs of HIV-infected children growing into adolescence and adulthood. Also, parents find it difficult to disclose the child’s HIV status. Moreover, promoting HIV prevention among HIV-infected young people is important. For children orphaned by HIV, special care is needed to equip them for the future.

Policy considerations

Primary and secondary HIV prevention needs to be promoted, which means educating people about HIV, providing materials for its prevention, providing access to treatment and providing programmes that reduce both the short and long term physical, psychological and social harm it causes in adults and children. Specific prevention efforts should be directed at the group of people below 30 years of age.

Environmental changes likely to reduce the risk of HIV, such as policy changes and the reduction of poverty, should be encouraged. Policy changes should be directed at ensuring laws that protect the human rights of people infected with HIV, regardless of their cultural background or lifestyle, and at ensuring the institution of an active testing policy for HIV.

Family-based services, possibly integrated into family planning, antenatal care and obstetric and child health services, need to be established, to provide assistance to couples affected by HIV and to address the specific needs of parents and their children – all aimed at the specific needs of living with HIV and HAART.

More research should be directed at the better understanding of the long-term side-effects of HAART, at ways to improve adherence, and at ways to improve treatment safety, such as drug treatment interruptions.

Type of evidence

This synthesis presents evidence based on a systematic review of (social) scientific and grey literature and uses all forms of studies, but mainly observational series.