Using the Internet to Provide Care for Persons Living with HIV

Abstract

There are no published reports on ways in which caregivers use the Internet to support people living with HIV/AIDS (PLWHA). Five hundred caregivers were recruited in a 5-week period to complete an online survey of demographic characteristics, Internet use, online health-seeking self-efficacy, and ways they used the Internet to support PLWHA. Caregivers were on average 39 years old, white, heterosexual, highly educated, and Internet-savvy. Most provided informal care only (e.g., as a friend; 78%), with the remainder divided among those who provided care exclusively as part of their job (11%) or in both informally and professionally (11%). Most (72%) respondents visited a general medical website for HIV information, and 44% shared information from the Internet with PLWHA. Compared to informal caregivers, caregivers whose roles were both informal and professional had greater odds of recently sharing information from the Internet with PLWHA (odds ratio [OR] = 2.03) and ever printing off information from a website to give to PLWHA (odds ratio [OR] = 3.87). Professional caregivers had higher odds of ever printing off information from a website to give to PLWHA (OR = 1.87), but lower odds of sending an e-mail with a website link (OR = 0.32) than informal caregivers. These findings suggest that websites providing HIV-related resources should consider the various ways in which caregivers use their content, and how utilization differs by role. More research is needed to understand how people providing care for PLWHA share information and support each other and the impact that doing so has on caregiver burden and treatment outcomes for PLWHA.