Ethical Considerations

This study involved human lives; therefore, ethical considerations applied. Holloway and Wheeler (1996) point out four issues regarding ethical concerns for qualitative research. First, following ethical approval of the research proposal, individual informed consent must be obtained from participants. Second, it is impossible to “bracket” out the entire background of the researcher. Therefore, it is better to express this as part of the research and make these experiences explicit in the report. Third, immersion of the researcher could cause tensions to the participants. To resolve these differing perspectives, the researcher should describe how the circumstance is managed in the research process. And fourth, there should be an ongoing assessment in the data gathering with other field notes and transcriptions. For instance, in student projects, a supervisor should be involved and give advice at all stages.

I followed these suggestions because, prior to conducting this project, I had finished the research proposal including the interview guide, information sheet and informed consent under the supervision of the major supervisor. The next process was that I sent a letter to ask permission from the director of the hospital or the authorised person of each study site to conduct the research; as example letters presented in Appendix A. Then, I was granted permission to conduct the study in their settings as indicated in some of the permission letters which form Appendix B. Following all the procedures mentioned, I, then, was able to apply for ethics approval from the Massey University Human Ethics Committee (MUHEC) (Appendix C). This procedure was to ensure that the study was properly planned and the rights of the participants were going to be

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protected. After approval had been granted I advanced the study to the next process, collecting study information.

In the process of data collection, the participants were informed about the study as shown in the participants’ information sheet (Appendix D) that was translated into the Thai language (Appendix E) in order to ensure that participants clearly understood their choices to participate in this study. I obtained permission from the participants before I met them. I explained the purpose and procedures of the study to people living with HIV/AIDS who met the criteria. All participants received a detailed explanation, both verbally and in writing, of what the research involves, including the aims and processes of the research, and the participants’ involvement. They were informed that participation in this study was voluntary and was confidential. They were assured that they had the right to full disclosure. They had the opportunity to ask questions, make comments, and express concerns that they might have concerning the project. Also, the participants were informed that there was no major risk involved. I also informed them that they had the right to withdraw from being study participants at any stage or to refuse to answer any questions. In addition to the procedure of obtaining informed consent, I informed the study participants during the interview that there were no “right” or “wrong” answers.

Once an individual agreed to participate in the study, I obtained a written consent to participation (Appendix F) that was translated into the Thai language (Appendix G). They were informed that all identifying information would be kept separately from research materials in a locked place. Only the researcher is able to match the real names and identities with the tapes, reports or descriptions and the names of individual study participants were not mentioned in the written report. Sometimes, participants asked me to stop tape recording when they needed to tell me something which they considered was “top secret”. I also promised them to keep confidential the topics that they expressed as secret. Privacy and confidentiality were ensured throughout the research. I informed the participants that if they wished, they could listen to, or amend, the information record (Appendix H) that was translated into the Thai language (Appendix I). The data were stored anonymously in a safe place and will be retained for five years. Not only were pseudonyms used for the participants in order to protect their confidentiality, but also in the stories that had been described in the findings I was

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careful not to refer to the participants using their real names. At the same time, the participants also agreed to keep the study confidential (Appendix J, K, English and Thai language respectively). The participants of this study were informed that the interviews were tape recorded and transcribed verbatim and the tapes would be erased a year after the research had been finished. The transcriber had no chance to know who they were. The transcriber has worked as my research assistant for nearly five years; thus, I trust her honesty and ability to correctly transcribe the recorded interviews. Also, she has never worked in the locations where I conducted this study; therefore, it was unlikely that she would know the study participants. She also signed the transcriber’s confidentiality agreement (Appendix L, M, English and Thai language respectively).

At the beginning of interview sessions with each participant, I again introduced myself, explained the purpose of the study, and the confidential nature of data gained. Along the process of data collection, I was closely supervised by two field supervisors whom I could access while I was conducting the data collection and preliminary analysis of the information gained in Thailand. In addition, I was concerned about appropriate location and timing of interviews for participants (Speziale & Carpenter, 2003), tried not to take up too much of their time, and was prepared to give emotional support to participants when necessary (Holloway & Wheeler, 1996) both by providing emotional support by myself and by referring them to other experts such as counsellors and the mentor of the HIV/AIDS group support.