Are we meeting the health and social service needs of HIV-infected parents and their children? A qualitative study

Background: HIV-infected parents and their family members may benefit from an array of health and social services to help them cope with HIV's effects on their health and well-being. Few previous studies have interviewed both parents and their children about their needs and the barriers they face as individuals and as a family unit.

Methods: This qualitative study uses semi-structured interviews, conducted from March 2004-March 2005, to investigate met and unmet health and social service needs among 33 HIV-infected parents, 27 children 9-17 years old, 19 adult children, and 15 caregivers (spouses, grandparents, and friends who helped care for the HIV-infected parent and/or the children). The families are a sub-sample of HIV-infected parents included in the HIV Cost and Services Utilization Study (HCSUS), a probability sample of HIV-positive adults receiving healthcare in the United States.

Results: HIV-infected parents identified a range of met and unmet health and social service needs. Families used home nursing, transportation, and housing services. Unmet needs included access to covered HIV-medications and income assistance. Parents had to balance taking care of their own health care needs with providing for the emotional needs of their children. Children reported using counseling services, such as individual counseling and special summer camps, to help them cope with their parent's HIV-status. Barriers to obtaining these services included: privacy concerns, costs, insurance coverage, and cultural competency.

Conclusions: Physicians, mental health professionals, and social workers may be able to help families gain better access to services that address their unmet needs.