Improving Self-Management of HIV/AIDS through Effective Education

Last summer, Harvard Medical School and Harvard Dental School students conducted research at the Port Elizabeth Health Complex (PEHC) in the Eastern Cape of South Africa on patients’ basic knowledge of ARV treatment. The results of their research highlighted issues of adherence, resistance, lifestyle, and mental health.

Harvard Medical School students conducted research at the Port Elizabeth Health Complex (PEHC) in the Eastern Cape of South Africa on patients’ basic knowledge of ARV treatment.

The purpose of the research was to assess the need and demand for HIV/AIDS education, to identify specific areas of need within ARV treatment education, and to report these findings to the PEHC who would undertake interventions based on the results.  The research was supported by the Cambridge Health Alliance (CHA), an organization partnering with PEHC as part of South Africa Partners Health Task Force. 

Method:
Fifty-five patients from theLivingston Wellness Clinic and Dora Niginza Wellness Clinic were interviewed through individual interviews and focus groups.  Eighteen service providers from these clinics were also asked to complete a survey about ARV treatment and patients’ knowledge.

Findings:

Key demographic features of the patient population participating in this research are highlighted in the table below.

Table 1. Demography of patient population

Although 90% of patients in the study disclosed their HIV status, the researchers found that disclosure is still a challenge.  Patients stated that disclosure was not always intentional and people often “just find out”.  Some respondents believed that overcoming stigma associated with HIV is still a problem and that stigma increases their stress levels. Family support was identified as necessary but not always available. Thirty-two percent of patients believed that there is a cure for HIV.

Patient Feedback

HIV/AIDS Treatment

Fifty percent of patients obtained information about antiretroviral treatment from nurses and counselors, making nurses and counselors the primary source of information for patients. This was followed by doctors as well as family members. Media and literature were the next most popular form of obtaining information.

Content and Methods of Education

The researchers asked patients to describe the issues on which they would focus in HIV education and how they would educate people.  These were the main responses:

Information they would share with other PLHIV:

• Always use condoms, keep one partner, eat properly, exercise, and live positively
• Get tested early
• Do not go to witch doctors for testing and treatment
• The importance of support groups and counselors
• Do not hide your status, it will make you worse.
• Do not believe anyone who says they are HIV negative.
• HIV does NOT mean death!

How they would share this information:

• Short writing and colorful pictures
• Story format with HIV positive characters
• TV programs
• Go into the community and teach in homes
• Posters

Focus Group findings

During the focus groups certain themes arose regarding the need for food and money in dealing with HIV.  Participants found that the government grant that supports people living with HIV is imperfect.  They emphasized the importance of support groups and reading about HIV.  They made suggestions about the kinds of informational videos that should be played in clinic waiting rooms, and they spoke about the crucial role of the Wellness clinic in patient care.

Service Provider Feedback

According to service providers, patient misconceptions have a major impact on adherence and transmission.  The following were some of the key patient misconceptions that they experienced in their work:

• Antiretrovirals (ARVs) cures HIV.
• Anyone who is HIV positive can get ARVs.
• ARVs make you sicker and can kill you more quickly.
• ARVs make you fat and sick.
• If your CD4 count increases, or when you feel well, you can skip doses until you are sick again.
• Once you are on ARVs you are not infectious.
• ARVs in South Africa are very cheap.
• You can take ARVs with alcohol.

Overall the researchers found that many of the patients in the study lack basic information about ARV treatment. They need information, including how ARV treatment works, the need to use a condom, the importance of disclosure, and the importance of leading a healthy lifestyle.

Dr. Pelissa Ford of PEHC felt that, “The students were most helpful as through the two projects they did, we were able to learn quite useful lessons. As a result of [the students] survey, we have adapted our education and counseling, doing away with the complex terminology, and also gearing it to address the concerns of patients rather than what we think they need to know.”

SA Partners looks forward to its continued partnership between CHA and PEHC.