Assessment of Support Service Needs of Primary Caregivers of HIV and AIDS Infected Children: A Review of Literature and Suggestions for Practice

Summary: With the advent of highly active antiretroviral treatment, routine screening and treatment options for pregnant women for perinatally acquired HIV and AIDS, infection is on dramatic decline in the U.S. In spite of the declines and the medical advances, primary and informal caregivers of infected children continue to face innumerable challenges with regard to the availability, access and utilization of non-medical supportive service care needs. HIV/AIDS continues to create unique challenges for infected children and the non-infected family caregivers at multiple levels; impacting their relationships, resources and resilience. Objective: This literature review identifies and assesses the unique and critical support services (non-medical, ancillary and instrumental) needs of informal primary caregivers of HIV positive children who live within home-based and non-institutionalized settings. The absence of these services may adversely affect caregiver’s quality of life, care competency and care-role satisfaction. Methods: The review began with an extensive search of electronic databases from peer reviewed journal articles and unpublished best practices from AIDS service organizations and health practitioners. In addition, this review closely examined a caregiver support service initiative namely, the Family AIDS Clinic and Education Services program (FACES) program at Nationwide Children’s Hospital, Columbus, Ohio. Findings: AIDS wreaks devastating medical and psycho-social havoc on children and their families. Unlike cancer or any other chronic disease, the symptomatic child may be the first indicator to the family and the physician that HIV is present in the family. In spite of the cost saving result of home-based care for HIV-positive children, many caregivers continue to wrestle with remarkable personal burdens, including a sparse social support service system. Conclusions: Meeting the needs that primary caregivers face will require that health policy makers, administrators, program developers and direct care service providers continue to seek out better ways to understand the real needs of primary caregivers and, to actively involve the caregivers in the development of creative and innovative strategies for providing the much needed supportive social service care resources