Data collection

This study was undertaken in six sites in the South of Thailand that were selected because they would provide the opportunity to recruit participants from both rural and urban areas and to meet people who did and did not participate in any HIV/AIDS group support. From some sites, I expected to collect Muslim participants. However, in the period of doing data collection, the areas in which I had expected to select Muslim participants were unsafe therefore, the number of Muslim participants is limited (as discussed under the subheading “Limitations of the study” in Chapter Eight). In these six sites, people living with HIV/AIDS were willing to share their experience. The sites are not named in order to protect the anonymity of participants.

The data of this study were gathered through in-depth interviews and audio-tape recordings, observations in the field, and field notes. Data collection was undertaken over a nine-month period in 2006. Both multiple sites and prolonged engagement are necessary in order to enhance credibility of results and findings, make it possible for the researcher to obtain empathetic understanding of the insider’s point of view, and to explore and uncover the meanings the participants give to their ideas, feelings, experiences and perceptions (McCann & Clark, 2003a). In this section, the sampling techniques, access to the participants, the stages of doing the interview, interview guides, participant observations, field notes, and participants’ demographics are explained.

3.4.1.1 Sampling techniques

In this study, I applied three sampling techniques in the process of selecting the participants – purposive sampling, snowball sampling and theoretical sampling. In the initial stage of data collection, I had six inclusion criteria for selection – persons who 1) had been diagnosed as HIV-seropositive, 2) were aged 18 years or older, 3) accepted that they were HIV infected persons, 4) had lived with HIV/AIDS for five or more years, 5) were mentally alert (no cognitive impairments) and able to communicate in the Thai language, and 6) were willing to participate in this study – in order to guide the purposive sampling. Purposive sampling was employed in both hospital and community settings. I also applied snowball sampling to search for further participants by asking nurses, health volunteers, and the leader of the HIV/AIDS groups to suggest people whom I could approach, as suggested by Polit and Hungler (1999).

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In grounded theory, most participant selection is based on theoretical sampling. Theoretical sampling is an essential sampling technique in grounded theory (Strauss, 1987) and was the main method I used. It is the process of data collection for generating theory and is based on preceding data collection and analysis. The researcher decides which data to collect next and where to find them, in order to develop the theory as it emerges. Thus, sampling becomes more specific with time and the process of data collection is controlled and influenced by the emerging theory (Glaser & Strauss, 1967; Morse & Field, 2002; Strauss, 1987; Strauss & Corbin, 1990, 1998). In this study, theoretical sampling was employed when I collected new data which I then used to compare with emerging categories and establish conceptual boundaries that were related to the evolving theory – for instance, when I found that participants who have children have a will to live for their children, I asked myself the question “Do persons living with HIV/AIDS who do not have children have a will to live?” Therefore, I recruited participants who did not have children, in order to clarify the question or hypothesis: “What encourages their will to live?” and “For whom do they live their life?”

Sampling and analysis occurred simultaneously as the study progressed (Morse & Field, 2002; Speziale & Carpenter, 2003). The sampling was continued until theoretical saturation or category saturation was reached which was when the participants were saying nothing new about the concepts being explored, no new codes emerged (Cutcliffe, 2000; Speziale & Carpenter, 2003), and no new data emerged during coding – that is, no new properties, dimensions, condition, action/interactions (strategies), or consequences are seen in the data (Strauss & Corbin, 1998) which are relevant to particular categories and subcategories.

3.4.1.2 Access to the participants

In order to protect the rights of the participants and to obtain essential and comprehensive data, I demonstrate, in the following section, how I accessed the participants to clarify my concerns about both ethics and methods. There were three main ways to access the participants in relation to the key persons. The first group of participants I met through being introduced by nursing staff who worked at the outpatient department (OPD) of the hospital where the HIV/AIDS clinic was located. The participants in this group were those who came to the hospital and received services at the OPD. Some of them lived in this community but some came from other areas so

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as to keep their HIV status secret. Some hospitals created a special name for the HIV/AIDS clinic in order to disguise the services provided at the clinic aiming at protecting patients’ confidentiality. In this setting, most participants kept their HIV status strictly secret. Most participants in this group did not participate in any HIV/AIDS support group. Therefore, in the first interview, staff nurses provided me with a private and comfortable room to meet participants and, if they agreed, to interview them. However, I could make an appointment with participants for a follow- up interview in other places which were convenient to the participants.

The second group of participants, I accessed by meeting with nursing staff who were the mentors of the HIV/AIDS groups and by meeting with the leader of the HIV/AIDS group. Most HIV/AIDS support groups in the South of Thailand are arranged by hospitals or healthcare professionals. Both key persons explained my study project to the persons living with HIV/AIDS who joined their support groups. After the persons living with HIV/AIDS gave permission to me, I approached them. The HIV/AIDS support groups also have unique names. With this group, mostly, I interviewed them after they finished their group meeting. For the follow-up interview I met them in other places of their choice in which privacy remained the top priority since most of the participants disclosed their HIV status only to the group members, but still kept their HIV status secret from the public. Sometimes, I interviewed them at their homes. (The concerns regarding interviewing at home are discussed in the following section).

The third group was different from the first and second groups because for the first meeting, I met them at their houses or in their communities and not at the hospital. Some of them did not participate in any HIV/AIDS groups but some did. I gained access to them via health volunteers who worked with, and helped, persons living with HIV/AIDS in their designated areas. Also I accessed this group through the leader of the HIV/AIDS group. Both health volunteers and the head of the HIV/AIDS group asked persons living with HIV/AIDS, whom they looked after, whether or not they were willing to grant permission for me to meet them (as discussed under the subheading “Ethical considerations”). In this setting, some participants’ diagnosis of HIV status was secret. Therefore, when I met them at their homes, I carefully planned how to protect their confidentiality. For instance, I disguised myself as their relative or friend who came to visit them. And following a suggestion by Swanson (1986), I dressed casually

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when I went into their communities. That author highlights that the manner of dress must be appropriate to the site and during the interview. It not only helps the researcher to gain access to participants, but also gain their respect. Furthermore, instead of driving a car to their houses, I commuted by a motorcycle to the participants’ places in order to avoid arousing the suspicions of neighbours.

3.4.1.3 Participant demographics

In this study, theoretical saturation of data was achieved with 33 participants, 24 women and 9 men. One participant identified himself as ‘gay’. They ranged in age from 29-58 with an average age of 37 years. The period of time since diagnosis ranged from 5 to 15 years. Twenty five of the participants had been infected with HIV/AIDS for 5 to 10 years, while eight participants had been diagnosed with HIV more than 10 years. Their educational level ranged from completed primary school to a four-year bachelordegree.

Twenty-eight participants were Buddhist and only five were Muslim.

At the time of carrying out the data collection, 29 participants reported that they had enough income and five of that group had good economic status. Eight participants were employed as volunteers by HIV/AIDS support groups. Five participants worked in construction. Three worked in a factory as unskilled workers. Another five participants worked in a rubber plantation, two sold vegetables, one made ceramic dolls, one was employed as unskilled worker in a prawn farmand one was a self-employed worker in the family business.Another one was a Lotto seller, and one worked as a cashier at the hotel.Anotherfive participants were unemployed.

Twenty-nine participants were infected with HIV by having sexual intercourse, two from drug use and two participants did not know the source of infection. Eleven participants were diagnosed on routine attendance at an antenatal care clinic and a further 11 found out when they had tests following an illness. One was diagnosed on routine annual physical examination. Another one found out when he had a blood test done for HIV as part of preparing to get married. Another one was diagnosed after she was raped. The remaining participants found out after partners became sick or died or left and were known – or suspected – to have had HIV/AIDS. At the time of data collection, 24 participants had a partner. Sixteen of the 24 reported having partners who were HIV infected (two HIV/AIDS couples were interviewed). One participant’s

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partner had not been tested for HIV. Eight participants were widowed or separated. Only one was single.

Twenty-two participants reported having children (range 1-3); the youngest child was nearly 3 years old. Four of these living children were HIV positive. Five participants who reported no children had previously lost a child to HIV/AIDS. Thirty-two participants lived with someone – either with their children, mother partner or friend. Two participants appeared to live alone including one who became a nun. Nine participants did not participate in any HIV/AIDS support group. Only five participants had disclosed their HIV/AIDS status to the public.

Eighteen of 33 participants had experienced infection with opportunistic diseases such as pulmonary tuberculosis and meningitis as well as wasting syndrome. Their opportunistic infections were treated and cured. At the time of data collection, 28 participants reported taking antiretroviral drugs. Two participants began to take ARV drugs in 2000 at their own expense. Since 2001 some people have received ARV drugs free of charge as it is funded by the Thai government. Then, a number of people living with HIV/AIDS – including participants – received ARV drugs free of charge. Twenty- four participants reported that their CD4 significantly increased after taking ARV drugs. However, some of those who took ARV drugs experienced a variety of side effects, such as fat accumulation and drug allergy. At least nine of the 28 participants who took ARV drugs changed their ARV drugs regimen after experiencing side effects. Because of lack of knowledge, one of them who had CD4 of more than 200 took ARV drugs because she did not know the criteria for when ARV drugs should be taken. She thought the sooner she took ARV drugs the more they would benefit her condition.

Only five of the 33 participants reported not taking ARV drugs because their CD4 levels were high (from 200 to 800). One in five participants avoided taking ARV drugs while two in five had registered for the quota of receiving ARV drugs if their CD4 levels decreased to less than 200. Unexpectedly, at least one participant takes less care of his health now that ARV drugs are available than he did before they were made available.

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3.4.1.4 The stages of doing an interview

There are five stages to achieving a successful interview. Firstly, there is the arrival process. The significant keys to success in the interview – in particular, with persons living with HIV/AIDS – are respect and rapport. In Thai culture the feelings of some people living with HIV/AIDS of being inferior and stigmatised, and my position as a lecturer could create a gap between them and me. Therefore, when I first met the participants, I expressed my respect, trust, and rapport to them. Rapport, trust, and respect can be presented in many ways. For instance, when I met them, I greeted them with a smile and said “Sawasdee” (Hello). I walked to them (instead of waiting for them to walk to me). If they sat on the floor, I sat with them. I helped them as much as I could. We ate meals together. I listened to them. I expressed my appreciation to participants that they were willing to participate in this study (Wilson, 2004). I also told them some stories of my life when appropriate. They called me “Nong O” or “Pee O” (O is my nickname) in order to minimise the gap.

These prefixes are culturally used by Thais to present their respect to each other. It is considered impolite to address one by name without a prefix, especially for younger persons to address older ones by their names only. However, it is acceptable for those who are at the same age not to use a prefix before each other’s names. As a result, asking someone’s age is acceptable in Thailand because knowing the age of one’s conversation partners enables each one to choose an appropriate prefix to address them. In this study, I also used Pee (older sister or brother) in front of the names of persons who are older than me. I also used the term Nong (younger sister or brother) in front of the names of persons who are younger than me.

Secondly, when the participants felt familiar and comfortable with me, I moved on to the next step – that is, introducing the research topic, research aims, what their involvement was to be, and when I would terminate this study. I explained their role and my role.

Thirdly, as for starting the interview, this took place after the participants felt familiar with me, usually during the second visit for new participants (persons whom I had not known previously) and in the first visit for the participants whom I already knew. In conducting each interview, I started with social talk or an opening question and used

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two ways of communication (Swanson, 1986). Every participant’s concern was dealt with, and every question was answered. If they were engaged with work, I did not interrupt. Sometimes, if they were doing some work that I could do, I helped them. I realised that helping them and doing everything that I could do with them was another way to establish relationship, trust and respect. While doing fieldwork, I participated in many activities such as attending an HIV/AIDS group meeting, going to the funeral of the mother-in-law of one participant, giving financial support for them when appropriate, taking them to hospital, and driving them to places that they wanted to go (sometimes) such as beaches. I always prepared snacks when they had a meeting. I also brought some food, fruit, and a gift for participants. In return, the participants treated me kindly and well. They always welcomed me to their homes.Also, I kept in mind that not all questions could be asked at once – especially not in the first interview – although this was concerned mainly with demographic data. I asked each question when it related to the topic of each conversation. Strauss (1987) suggested that the researcher should not assume the analytic relevance of any traditional variable such as sex and education, until it emerged as being relevant.

Fourthly, during the course of in-depth interview the questions used were more focused and specific, depending on the data that emerged. In this study I used in-depth or unstructured interviews (Legard, Keegan, & Ward, 2003). I applied two types of unstructured interview. First, I applied the unstructured formal interview because as I am a novice, I prepared the interview guide before I entered the fieldwork. However, I did not rigidly follow question by question. Second, I utilised the informal interview. Informal interviews were most often used throughout the process of data collection, were conducted after I had established rapport with participants in the follow-up interview, and related to the data that emerged. Chenitz (1986) regards the informal interview as an interview which is similar to natural conversation, having no ceremony surrounding the interview, no particular meeting time, length or place, no predetermined and agreed-upon theme(s) or topic(s) for interview. Chenitz mentioned that an informal interview may last only a few minutes – as occurred in this project. At this point I could not do any tape-recording, but I captured and noted the key words and main idea in my field notes and discussed them with participants later. Most interviews were audio-taped and each interview was transcribed verbatim.

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The time and place for each interview depended upon the convenience of participants. In this study, interviews were conducted at various places including participants’ homes, hospitals, temples, beaches, and restaurants. The duration of in-depth interviews ranged from 30-120 minutes. However, sometimes the interview was longer than two hours. This was because, in some cases, I allowed them to spend time expressing their feelings as they wished. I mostly interviewed participants when they were alone because, from my experience, some participants have their own secrets which were not disclosed even to their partner with whom they were closest. Interviews when other persons were present occurred only when participants preferred this. However, no one else was present for some sensitive questions such as “How did you feel when you discovered that you had HIV?” I asked them when nobody else was present, especially anyone else who was infected with HIV. This was because I understood that most Thai people feel “krengjai7” and have difficulty in responding to this kind of question in front of others. Although some participants invited me to interview them at their house, I interviewed them when they were home alone. For instance, I went to a participant’s house when her sons had gone to school. Then, after I had been to her