Methodology

In each country the research project will be different but consistent with the ethos of the People Living with HIV Stigma Index. The number of people interviewed will be different, as will be the outreach and composition of responses from different groups (such as men who have sex with men, sex workers, injecting drug users and other vulnerable groups). The methodology and research design in each country will build on a core commitment to the ethical process and rigor and sensitivity of each individual interview. 

Sampling strategy and research design

In each of the country projects, the research team should include partners from local academic institutions and other experts who can advise on aresearch design and sampling strategy that is appropriate to the specific context. Furthermore, it is recommended that they contact the Stigma Index International Partnership (GNP+, UNAIDS or ICW) to seek their advice.

Sampling

There has been much debate about sampling for the Stigma Index. Research studies such as these take a representative sample of the population of interest, with the aim of producing results that can be generalized for that population. This means that information collected from a sub-section of a population (the representative sample) can be used to reach conclusions that apply to the population as a whole (i.e. inference).

The problem in this case is that it is impossible to take a representative sample of the whole population of people living with HIV. That would require the use an objective method of selection, where all members of the study population have an equal chance of being part of the sample. However, it is very difficult to take a representative sample of people living with HIV, given that we do not have a complete list of everyone living who is living with HIV (i.e. the entire population of interest). 

The sample size

Finally, it is important to bear in mind the question of sample size. You need to take a sample that is large enough to capture the main features of the population as well as the divergence from the main features - or what is termed variability. But what is large enough? Or to put this more formally, What sample size is required to ensure that the study results can be relied upon to make generalizations?

This is a difficult question to answer because it depends on a number of factors, including how precise you want your findings to be and the variability of the study population with respect to the characteristics of interest. The sample size has nothing to do with the underlying size of the population of interest (a common myth). However, it does depend on whether you want to present results at the international (global) level only or use it to compare different countries, or areas within a particular country. It also depends on whether you want to show national-level results or breakdowns for specific areas or groups of people.

For example, one study in Tanzania sampled three key groups of interest to measure stigma related to HIV: general community members, health care providers, and people living with HIV. The study intended to gather 100 responses from people living with HIV "to fall within the minimum required size on which statistical tests could be meaningfully conducted and within the maximum that the study resources could support". In the end, to ensure gender balance in the sample size, they extended the survey to include 218 respondents, since the majority of the first 100 respondents were women. In the Asia Pacific Network of People Living with HIV/AIDS study, there was a sample size of 764 (302 from India, 338 from Thailand, 82 from Philippines and 42 from Indonesia).
These examples highlight that sample size will vary depending on the context and focus of each country study.

Some important things to remember for each individual study using the People Living with HIV Stigma Index include:

  • What is the minimum size required to meaningfully run statistical tests?
  • What is the maximum size that the study resources can support?
  • If balance is important for the study (e.g. gender), do you have an equal number of responses (e.g. from men and women)?
  • Even if the study cannot be representative, do you have a sample that contains a mix of positive people of different ages, sexuality and economic, social and educational backgrounds?

Ultimately, you need to settle on the best and most feasible sampling strategy for your research. The People Living with HIV Stigma Index Internation Partnership will be able to inform you about what other countries' teams have done and provide you with the necessary advice for your country.

Quality control

Rigor, consistency and reliability are important concerns for the implementation of the people living with HIV stigma index as they are for any research process.

Each interview and in-country research process contains a referrals and follow-up section and a quality control procedures panel. These should be filled in by the interviewer after finishing the interview and, later, by other members of the survey team back in the office.

As soon as questionnaires come back to the office, they should be checked by the team leader. Each questionnaire includes a quality check section on the last page so that the country team leader can check that the interviewer is doing a good job, and to query any work that does not seem to be satisfactory.

Analyzing the data

There are many ways to analyze the data collected from the index. Through this final analytical process, the research team will be able to produce a report that documents the key results and findings from the People Living with HIV Stigma Index and make some recommendations for the future.

Before all this can happen, data capturers need to enter the raw data (original responses) from each questionnaire into a computer-based programme. It is recommended to store the collected data on the Stigma Index Data Portal. A User Guide is available to assist you with uploading the data into this Data Portal. This allows you to view the data as simple frequencies and pie charts. You can also choose to export data from specific questions or all data, which can then be used to do further, or cross analysis using other statistical software, such as SPSS.  

Ethical research

The People Living with HIV Stigma Index is not intended to be an abstract academic exercise that is done "to" our community. It encompasses a participatory spirit for all those involved and is intended as an empowering research tool for developing evidence based advocacy by, and for, people living with HIV. Therefore, people living with HIV will be at the centre of the process as both interviewers and interviewees and as drivers of how the information is collected, analysed and used. The issues of informed consent and confidentiality are of critical important for ensuring ethical research.

Informed consent and confidentiality

Informed consent

The principle of informed consent means that each interviewee must be asked to consent to the collection and processing of their personal data after being fully informed about the nature of the study. This means who is involved in it, how the data will be processed and stored, and what the data will be used for. The interviewer must explain to the interviewee that they are free to refuse to be interviewed, to withdraw from the interview at any time, or to refuse to fill in a particular question or set of questions.

Confidentiality

Confidentiality is concerned with the issue of who has the right to access data provided by the participants of a research study. When conducting research, one should always ensure that appropriate measures are in place so as to make it absolutely certain that the information disclosed and participants' identities are kept in confidence. To secure confidentiality the Stigma Index questionnaires and informed consent forms will be identified by a unique identifying code (as opposed to the name of the interviewee).