Table 2. Recommendations for future bio-behavioural surveys on HIV.

Aspect of survey	Recommendations
Survey design
Staffing	Ensure that the appropriate staff are available and trained to ask questions about self-reported HIV status in a professional and confidential manner. Have a fully trained HIV counsellor on the staff. Ensure a psychosocial support counsellor is available if needed.
Survey or interview setting	Ensure that the interview area is safe and allows participants to speak confidentially.
Interviewing technique	Consider using computer-assisted self-interviewing techniques – with audio output and input for illiterate participants – to ensure greater confidentiality and privacy for the participant.
Questionnaire
HIV status question	Typically, ask each participant “Have you ever been tested for HIV?” and, if the participant gives a positive answer to this question, ask “Was your most recent HIV test within the last 6 months, 6–12 months ago or more than 12 months ago?” and “What was the result of your most recent HIV test?” Those who say they have never been tested should be asked “What do you think your HIV status is today?”
Supplementary questions	Participants who report being HIV-positive should be asked “Are you currently enrolled in an HIV care programme? Are you currently taking antiretroviral treatment? If so, did you initiate antiretroviral treatment within the last 6 months or 6–12, 12–24, 24–36, 36–48, 48–60 or more than 60 months ago? Have you had a CD4 count? If so, what was your most recent CD4 count and was it within the last 6 months, 6–12 months ago or more than 12 months ago? Have you had a viral load assay and, if so, what was the result and was the assay within the last 6 months, 6–12 months ago or more than 12 months ago?”
Probe	As all self-report data may at times be inaccurate, it is helpful to have additional questions that may help determine if a response is valid. For example, additional questions about being on HIV treatment or attending specific HIV clinics could help verify or refute a previous self-reported HIV status.
Ethical considerations
Consent	Ensure that all participants undergo an informed consent process that explains the survey objectives, steps, possible benefits and harm of findings. Inform participants of the survey’s confidentiality and data anonymity and of their right to refuse to respond to any questions.
Training	Train staff in the ethical conduct of research, including the maintenance of confidentiality and/or anonymity. Make clear what penalties there are for staff breaking confidentiality. Have all staff sign a confidentiality agreement form.
HIV counsellor	Consider training interviewers in HIV test counselling. An HIV counsellor may be better equipped to provide advice, counselling and referrals to those participants responding that they have positive HIV status.
Referral for care and treatment	Have available information about – and referrals for – local care and treatment.
Data management and confidentiality	Do not collect any personal identification. Link all behavioural data, including self-reported HIV status, using codes. Once completed and reviewed, keep all documents, including those with self-reported HIV status, in a secure and locked location that is only accessible to designated personnel.
Surveys in small communities	When surveys take place in small communities, where survey staff might know participants, measures in addition to the ethical considerations mentioned above may be needed. For example, consider having interviewers and other staff recuse themselves if they know the participant. Where possible, bring interviewers and other staff members from other communities and/or use computer-assisted self-interviewing techniques.
Data use
Estimates	Estimate the total size of the epidemic from the numbers of reported and unrecognized cases. Also estimate the percentage of HIV-infected participants who were unaware of their positivity at the time of testing in the survey, and the percentage of HIV-infected individuals who are not receiving care.
Identification	Identify population subgroups and risk behaviours associated with unrecognized or undiagnosed infection to improve the prioritization and targeting of care and treatment services.
Comparison	Compare self-reported HIV status from surveys with any additional and relevant data that are available – e.g. viral load, blood levels of antiretroviral medications and case surveillance data – to inform the interpretation of the true levels of HIV status awareness.

HIV: human immunodeficiency virus.