Obstetrics and Gynaecology

HIV RESEARCH IN A DEVELOPING NATION - A HURDLED PATH

Problems faced by HIV positive subjects are well documented; however literature describing difficulties faced by researchers working with HIV positive subjects is minimal. An interview based study on behavioral aspects of HIV positive subjects was carried out from our center as part of a multi-centric trial. Both patients and counselors from various institutions were interviewed. The problems encountered by researchers are mentioned below.

1. Authorities: Fifteen organizations were approached with all the necessary documents regarding the study e.g. permission, authorization, confidentiality undertaking etc. Each center was visited 4 to 8 times. However, 11 organizations did not grant permission, neither was the reason for not doing so revealed. Two centers gave a verbal refusal; nine centers did not respond at all. In one nodal HIV/AIDS center with a large statewide network it was verbally conveyed that the sponsors of the study should primarily have routed the project through their organization.

2. Counselors: Counselors were interviewed from 4 NGOs, 2 general hospitals and 10 smaller establishments including doctors and social workers. Counselors were reluctant to share information claiming it to be sensitive. Some appeared to be insecure about shortcomings showing up. While others exhibited a low morale and despondency; ironically, the counselors' with the heaviest workload were often unavailable for the interview due to their busy schedule.

3. Subjects: Subjects who came for an HIV test were reluctant to be interviewed. They felt this was unnecessary and could bracket them with the HIV positive group. One in three refused. Researchers had difficulty in communicating with the HIV positive subjects as many were in a state of initial shock. Getting subjects to sign informed consent forms prior to the interview was difficult as they feared it would reveal their identity. According to Weitz R (1) the possibility of informed consent becomes even more dubious if the respondents feel they cannot afford to refuse. Other reasons for not willing to participate in the study were denial of illness, suspiciousness, anger at inevitability of diagnosis and irritability with hospital staff for their slow responses and callous attitude. The psychological impact of being HIV positive affected the interview process adversely. The clients often made special requests for rehabilitation, support and treatment. The interviewers could not address these issues except for a patient and sympathetic listening.

Though follow up was an important part of the study protocol it proved very difficult (only 35% followed up). Home visits were not permitted as this would violate the confidentiality of subjects, so compliance depended totally on the lasting effect of the first interview. Sometimes subjects would come for a repeat visit to the OPD but would completely avoid, ignore, or deny any previous contact with the researcher.

Beadnell et al(2) have suggested measures to prevent attrition in an HIV/STD prevention program including the use of strategies to support attendance (including monetary incentives and attention to group process factors) and specifically tailored intervention formats. However this is not feasible when a study involves only evaluation of the intervention and its effects (coping, counseling).

4. Investigators problems: The process of administering a detailed study questionnaire to the study subjects was very unsettling. Investigators are expected to be objective and neutral and thus could not address the numerous social, cultural and ethical issues of the patients and counselors. This coupled with the sheer helplessness of being unable to do anything about the burden of the disease, took its toll. Some researchers suffered sleepless nights, became irritable, exhibited temper outbursts or dejected resignation to the situation. Three out of 5 researchers left the study midway. We strongly suggest that future research projects pertaining to HIV should take into consideration the inevitable stresses and practical difficulties that are faced by researchers in this field.