Assessment of the Needs of People Living with HIV/AIDS in Massachusetts and the Boston EMA

Dates: 2008-2010

State: Massachusetts

Client(s): Boston Public Health Commission, Massachusetts DPH HIV/AIDS Bureau

Service: Applied Research & Evaluation

Technical Expertise: HIV & Infectious Diseases

JSI was awarded contracts with the Boston Public Health Commission (BPHC) and the Massachusetts Department of Public Health (MDPH) to conduct a coordinated study of the needs of people living with HIV (PLWH) in Massachusetts and the Boston Ryan White Part A Eligible Metropolitan Area (Boston EMA), which includes southern New Hampshire.

The goal of the project was to assess and describe the need for HIV care and support services, barriers to accessing services, and experiences living with HIV & AIDS, including quality of life, stigma, self-sufficiency, and other challenges. The project used a two-phase survey (administered by mail, online, by phone, and in-person) in four languages to reach PLWH, including those in care and harder-to-reach populations. Nearly 1,800 PLWH responded to the Phase I survey, and over 1,000 responded to the longer Phase II survey -- the largest samples ever acheived for a study of this kind in Massachusetts.

The HIV/AIDS Consumer Study final report was released in December 2011 at a World AIDS Day event at the Massachusetts Statehouse. Among many significant findings, the survey found that a majority of PLWH in MA and the Boston EMA were in good health, and have benefited from the comprehensive, high quality local health and social services infrastructure. In addition, access to care and engagement and retention in care and treatment was high, with 99% of those surveyed reporting that they were in medical care and 72% of respondents reporting an undetectable HIV viral load.

While progress has been made, obstacles to HIV treatment persist. Although the majority of respondents reported being in care, 16% reported that they waited more than a year to access medical care. In addition, prevalence of mental health issues among the sample was high, affecting respondents' need and access to services, as well as their ability to adhere to HIV medication regimens. The study also highlighted the continued persistence of HIV-related stigma and its negative impact on HIV disclosure and care and support seeking behavior.

Follow-up analyses using the rich dataset are anticipated in the future focused on specific populations of interest, including PLWH over 50 and those with mental health and/or substance use issues.

Read JSI Press Release: JSI Report Reveals Progress on HIV in MA but Challenges Remain


Related Resources