La sistematización de los agentes no estatales

4.4.5.1 Data collection method

Two FGDs were used to gather in-depth information from the participants. Eight participants were included in each group (Hennink, et al., 2010).

This method of data collection was chosen to allow all participants the opportunity to share, listen and understand one another‘s opinions and to develop and generate ideas beyond their own original voices as the conversation progressed (Babour & Kitzinger, 2001; Patton,

135 2002). It was considered the best method for exploring the participants‘ experiences,

opinions, needs and concerns. It gave the researcher the opportunity to discover how participants complemented each other, reached a consensus or opposed each other‘s ideas (Babour & Kitzinger, 2001). This allowed a dynamism to develop that gave participants the opportunity to interact and build on each other‘s ideas and opinions, enriching the

information that emerged and enhancing the quality of the data (Denzin & Lincoln, 2005;

Patton, 2002).

The method was chosen to enable people who might be intimidated by one-to-one/face to face interviews to participate in research by offering collective ways of communication (Patton, 2002). The participants who were from the same cultural background were

encouraged to share their ideas, beliefs and attitudes towards HIV and functional limitations.

The FGDs were also able to provide safety and build the confidence of people who seemed to be vulnerable when alone. The group gave them the opportunity to come together, with warm feelings creating bonding and the ability to share their own experiences with regard to

particular functional limitations.

The FGDs were done at the hospitals in a social context where the participants could consider their own views in relation to the views of others and through this process generating high quality data (Patton, 2002). In a little over one hour, the researcher was able to gather very rich information from eight people instead of from only one (Patton, 2002).

4.4.5.2 Data collection procedure Step1: Obtaining permission

In December 2011, prior to data collection, letters were sent to hospital managers to ask permission to collect data. Letters granting ethical clearance and letters from the same hospitals granting permission for the survey were attached. A letter to support the study was requested from the Ministry of Health/ Rwanda Biomedical Centre HIV division (RBC/HIV division) (see the ethical consideration, section 4.4.8). Permission was granted in February 2012.

136 This was followed by visits to the two hospitals; one day was assigned to each hospital to

prepare for fieldwork and ensure that hospital managers and health care providers in the ARV clinics understood and supported the study.

Step 2: Identifying participants: Inviting PLWH to clinic

Visits were made to the two hospitals to prepare for data collection. The nurse responsible for the clinic assisted in choosing the day for data collection, based on the availability of the patients.

Step 3: Training the moderator and note taker

The site visits were followed by training over two days at the KHI to select the moderator and the note taker for the FGDs and to assist with screening. They were already familiar with the purpose of the study and the screening checklist as they had participated in its translation.

Step 4: Identifying participants for screening

Data collection took one day at each hospital. At both sites the FGD took place in the

morning as this time was preferred by patients so they could go home early and continue with daily activities.

At each hospital the nurse responsible for the clinic had prepared three rooms for the

screening, one for each interviewer, and a very comfortable room was prepared for the FGD.

This nurse gave a general and brief introduction to all the patients at the clinic about the reason for our visit, and then the researcher explained the purpose of the study using the participant information sheet (Appendix VII). She ensured that the participants understood that there were two stages. It was explained that only those patients who had been on antiretroviral treatment from 2009 or earlier were eligible to participate. The researcher explained that participants were allowed to withdraw from the study at any time should they feel uncomfortable. They were further assured that their participation in the study would remain confidential.

Data collection started at Hospital A. A large number of patients attended the clinic that day for routine consultation and to receive antiretroviral treatment. Although the research team

137 arrived at the clinic opening time at 07h00, patients started arriving at 08h30. They were

invited by the nurse to voluntarily join the screening after they had received their antiretroviral treatment. The patients signed the consent forms (Appendix VIII) prior to screening. At Hospital B the procedure was similar, the only difference being there were many patients at this clinic who wanted to take part in the screening.

Step 5: Screening to identity participants for FGD

A screening session took at least 7 to 10 minutes. In total, 40 patients were screened at Hospital A and 50 at Hospital B, where many more had volunteered. However for

consistency, at each hospital up to 20 patients were selected to be invited for FGDs; most had functional limitations categorised as severe to extreme; following the screening checklist rating scale (Appendix V). After screening, if a patient was considered suitable for the FGD, he/she was requested to wait.

At Hospital A, the urban hospital, some people were reluctant to participate in the screening and in the FGD, despite the explanations by the nurse and the researcher. They spent time discussing this with one another, in the process affecting the time available for the screening and for the FGD. In addition, at first they did not want their voices to be recorded until they were sure about confidentiality. Things were different at Hospital B, the rural hospital, where the majority of people who were invited for the screening were enthusiastic, and even those who were not suitable to participate in the FGD asked if they could. Of the twenty people found suitable for the FGD, 15 were willing to participate. This was a challenge for the research team as only eight people could participate and the researcher had to explain this to them. After the screening, the 20 patients eligible for the FGD were gathered in one room and invited by the researcher and the moderator to participate in the FGD.

In both hospitals, more women than men volunteered to participate in the FGD. As a consequence at each hospital there were five women and three men in the final sample for each FGD.

Step 6: FGD

138 Before starting, the purpose of the research was again explained by the researcher in

Kinyarwanda to the participants, by referring to the participant information sheet (Appendix IX). All participants were asked to sign a consent form agreeing to their participation in the FGD and allowing the use of the tape recorder in order to obtain accurate data (Appendix X).

The researcher explained why each of the participants had been included and they were asked to feel free and relaxed during the discussion.

The moderator facilitated the discussion in Kinyarwanda. He started by introducing the research team, explaining the discussion procedure, and giving assurances that ethical issues would be considered throughout the process of data collection. He then welcomed all the participants and asked them to introduce themselves. Participants were thanked for accepting the invitation to participate in the discussion. The moderator opened the discussion with jokes and humorous stories to create a relaxed atmosphere. A bottle of soda was provided to each participant as in Rwandese culture, when you invite people for a discussion or gathering, it is customary that you share a drink. Participants could then freely share their experiences of living with HIV and of how the hospital assisted them to deal with their new lives.

Notes were taken by a trained research assistant. The researcher‘s role was to monitor the tape recording, to take notes using a pen and a notebook and to oversee what happened during the FGD. In the middle of the discussion, people who tended to be shy were

encouraged by the moderator to contribute to the discussion. This was important, as certain participants were not very open about sharing their opinions, particularly at Hospital A.

Before closing the discussion, the moderator, note taker and the researcher reviewed and summarized the main points from the discussion and reviewed the notes taken. Each said something or read a summary of what he/she had written about the subjects under discussion.

Participants were then asked if they agreed with this record of the discussion, and any corrections or addition information were considered. It was necessary to check if all the questions in the study had been covered and if the issues raised during discussion had been adequately dealt with. It was important to ensure the accuracy of the data before leaving the field, as this would to improve the reliability of the findings.

139 At the end of the review, the participants were thanked and were offered a transport ticket as

a token of appreciation for their patience, as they would be leaving the hospital later than usual. This would enable them to travel by motorcycle which is faster (but more expensive) than a taxi bus and they would avoid arriving home too late. Participants at both sites, for their part, expressed their appreciation at being consulted and at being able to contribute to the improvement of their health care. The discussion lasted for one hour and forty minutes at Hospital A, while at Hospital B it took one hour and twenty five minutes. One of the reasons for this difference might be that one of the participants at Hospital A became emotional, and this caused a break and a moment of silence during the discussion.