90 Social capital networks - a) portraying a bonding feature
- b) portraying a bridging feature - c) portraying a linking feature - d) overlaps
- e) networking - f) interactions
Educational input - Behavioural change and social
relations Discussions and independent information
seeking exercises - a) Hunting for information
- b) New meanings - c) Gender issues
- d) Men as heads of families Myths and community beliefs discussed -
Transformative learning: New meaning making - Prevention
Impact on new learning - Condom use
Resistance - Behaviour change
91 preventive education to the vulnerable groups such as the youth who are said to be exposed to HIV because they are highly likely to take risks with sexual encounters. I would then provide education to these groups, building on what they already know about topics such as HIV, sexually transmitted infections and TB. I was also mandated to form HIV learning groups where the groups were expected to sit together and discuss topics of their choice relating to HIV prevention, transmission and treatment. Therefore, I would be guiding monthly lessons in each of the mentioned groups. This means there was a significant interaction between myself prior to my research role and the various support groups formed in the hospital premises. All the support group meetings were guided to enhance quality education provision even though the groups played a major role in their own learning because their learning was participatory and every member of the group was expected to take part. In view of my existing interaction and involvement in such groups, I therefore felt well placed to conduct the study. Although it might be argued that I would potentially be biased in my analysis of data or that my dual role might compromise the willingness of participants to speak freely, it will be shown later that the contrary was the case and that my familiarity with the participants on such a sensitive topic proved beneficial.
In my research role I had to contact the head of health services in the district to seek for permission to observe the three support group meetings in order to observe hospital protocol to ensure ethical considerations would not be compromised. This included being invited to district health heads of departments to explain verbally that I was a scholar intending to pursue my PhD at the University of KwaZulu-Natal. I explained my study required me to play the role of the observer in the three support groups’ monthly meetings for six consecutive months. These heads of department granted permission and were grateful to receive information and the request for consent. However, a letter was also written seeking for permission (appendix 3), so it could be filed for future reference.
The letter was written because it was the university prerequisite and because it was a demand for the hospital documentation. I, as researcher, also informed the panel of heads of departments that I had already contacted Health Headquarters to seek permission and for assessment of sensitivity of my topic. The health district head explained on the researcher’s behalf to the panel that,
92 according to his judgment, the topic did not indicate that it would impinge on sensitive issues nor harm the participants, therefore he urged heads of departments to grant permission to continue with data collection. A human resource officer was delegated to formalise the request by physically escorting the researcher to the doctor heading the Anti-Retroviral Treatment (ART) Centre to inform him of the request and tell him that the hospital heads of departments had granted permission to commence the study. The head of the ART Centre also needed a letter from the district heads of departments. The letter was written and submitted with signatures from all members of district heads of departments (appendix 3). The doctor responsible for the ART Centre introduced me as the researcher to the senior nurse at ART who in turn introduced me to the support groups to formalise the request and to instill a sense of importance of the study to the support group. This doctor repeatedly said to the nurse:
Make the support groups understand that Mrs Khang holds a different portfolio this time. She undergoes the study this hospital should have done a long time ago.
Let her collect data without any frustrations. I trust she will not violate patients’
rights because she is well aware of the ethics.
Then he turned to me, the researcher, and said:
Let me know if there are any challenges you encounter during this process because I desperately want this study to be a success. I want to offer you all the support you need for the benefit of this study especially because you have done the topic I have long been procrastinating to do.
As the researcher, I had to approach each support group about my request to attend their monthly meetings with a voice recorder to capture the meeting proceedings. This is because several scholars have indicated that an ethically sound approach by the researcher enhances the quality of research and contributes to its validity. Chilisa and Preece (2005) argue that the research participants should be provided with information about the study, its purpose, how it will be carried out and its duration, risks and benefits to participants. The research participants should be made aware that participation is voluntary and that they can withdraw from the study before its completion if they so wish. This universal ethical code has, however, been violated across time, space and culture. In most cases it is the marginalised and powerless whose consent the researchers ignore. In respect to what Chilisa and Preece deemed significant, I wrote letters to
93 address each support group and requested permission to collect data during their normal monthly meetings (appendix 2). The response was verbal but I recorded their response and accepted it as a formal agreement based on Walliman’s (2015) explanation that obtaining the respondents’
consent to take part in research depends on their willingness to participate in it.
The researcher has to provide detailed information to the respondents to allow a fair assessment by the respondent that leads to giving informed consent because the nature and context of the research must be understood prior to mutual agreement. Some key factors to consider, according to Walliman (2015), are: clarity, so that the content of the research has to be clearly understood;
and brevity and frankness so that the researcher is expected to be open enough to indicate areas in the research where the respondent has to remain calm, brave and collected due to the sensitivity of the issue to be discussed. Clarity, brevity and frankness are key attributes needed in information sharing to allow full participation. Such verbal explanations allow the research participants to understand their rights. This is why such an explanation is recommended to be in written form. Time may be needed for the participant to consider the implications of taking part, and perhaps also for consulting others. When dealing with organisations, written consent is always required.
Therefore, in my case, as the researcher, obtaining the informed consent of the research participants was mandatory and had to involve informing the support groups from whom data was to be collected prior to resuming my observations. I had to clearly explain the purpose of my observations during their meeting procedures and that the observation would do no harm to anyone and the recorded sessions were for future use when transcribing and translation begins so their information would be treated as real without additions or subtractions. Therefore, I had to follow this procedure to ensure that I had not violated the participants’ rights or taken advantage of their vulnerability, also to ensure one was loyal to the support groups. As the researcher I had to remind each support group that I was attending the meeting as a researcher and not as a counsellor who could respond to points raised during the proceedings. I was initially worried that the member’s reaction towards me would change because I was not attending their meetings to provide my usual guidance. But to my surprise all members in the three support groups felt free to participate and shared their different experiences such as on gender inequality and men as
94 heads of families without fear. I also had to remind them that they had the right to stop me if they no longer felt comfortable with my recordings because it had to be done for the six consecutive months. I decided to repeat the ethical implications of my study before each session commenced to ensure the support groups were still comfortable about my presence as an observer and the use of a voice recorder at every session.
As the researcher, I had to make sure that all was explicit enough for the support groups to understand and deal with the information presented. To ensure clarity, I had to ask support group members to indicate points at which they would request clarifications and allow members to digest my information without my presence for about five minutes. This is because I knew Basotho were likely to be silent in my presence, but members could feel free to discuss my request during my five minutes absence. However, it was interesting to see that what Weiner (2015), and Rule and John (2011) considered as ethically sound and showing respect for the respondents, was not the case with Basotho. For instance, members in different support groups asked for photos to be taken alongside the audio recordings to indicate who was talking because members believed there was nothing to hide since those that were infected lived openly with the virus. Similarly, those that joined because they were supporting their infected daughters-in-law also did not understand, even after several attempts to explain, why photos would not be taken during the sessions. Members kept on asking me as the the researcher to seek permission from the university to take their pictures as evidence that they were healthy and talking from the bottom of their hearts. It was quite difficult for some members of the support groups to understand that I had to keep the promise of confidentiality and anonymity because it was not guaranteed that all members would feel the same. As an experienced counsellor, I was also aware that what makes the first person feel good might not make the second person feel the same.
This was the reason I could not generalise one person’s request to imply that all members were comfortable to have photos taken. Significantly, Rule and John (2011) indicate that taking a picture of a group has to be agreed by each member to allow for differences prevailing in each individual. Anonymity, confidentiality and respect for the translated word in this research situation were maintained to the maximum level. Nevertheless, it was always interesting to
95 observe the support group members running to the meeting room during the data collection period because they wanted to be on time.
However, there has never been a road without twists and turns. For instance the mothers-in-law support groups they missed their scheduled monthly meeting because they had visitors to attend to. On the day of their next meeting, I also had to attend supervision sessions at Pietermaritzburg and therefore had to ask the mothers-in-law to re-schedule another day. Then their transport costs and lunch had to be reimbursed because they had travelled long distances to and from the hospital premises for this special meeting. Support group members had also extended the long hours of their stay in the hospital due to sessions which were recorded for data collection. I made it a norm to always thank the groups for allowing me the chance to collect data through observation and digital recording. I guaranteed to them that the recordings would only be used for academic purposes and never be used for anything else. My professional role (because they already knew me) and multiple visits made to the support groups helped them get used to my presence and to some extent carried the potential to positively influence people who were being observed to feel less worried about my presence.
I believe it was my profession too that made the support groups trust I would keep their proceedings confidential. Many scholars (for example Rule & John 2011) argue that keeping confidentiality includes ensuring the safe storage of such data. Therefore, a computer password had to be created to ensure that the data was kept and stored safely to prevent unwanted access.
4.10.1 Non-maleficence
Hammersley (1990) argues that the principle of non-maleficence in research is the process whereby the researcher scrutinises the researcher-participant’s relations, the research tools used for data collection and questions that will be used to seek responses. The aim is to avoid causing any harm to the participants Therefore non-maleficence is of great significance to any study particularly during data collection process. This is why there is always a need for approval from an authorized body. For example, no study can be conducted in Lesotho on health-related issues unless the researcher is granted consent by an authorized body after checking its potential maleficence to the participants. Therefore, social challenges such as TB and HIV which are said
96 to be contagious, risky and fatal cannot be researched unless such authorisation has been contained. Hammersley (1990) emphasises that the more sensitive and health threatening a topic seems, the more it requires other parties entrusted to protect human rights issues to consider whether the topic is not just a taboo for the participants but also demonstrates no likelihood of harm or hurt to the participant respondent’s emotional well-being. Hammersley encourages arranging for a professional to be available during the sessions so that, in the event that the respondents or research participants feel emotionally disturbed, the professional such as the counsellor or psychologist can attend to their emotional needs. This study observed the aspect of non-maleficence at all costs which mainly includes adhering to the ethics and ethical considerations as recommended by many scholars. A counsellor was made available in case any participants felt damaged by conversations that were covered during the data collection sessions.
4.10.2 Autonomy and respect for the dignity of persons
Every human being has the right to be treated in a way that does not indicate traces of belittling or lowering of human dignity. Dignity is explained by Rule and John (2011) to be an essential ingredient that improves self-esteem and self-confidence. Therefore, it is mandatory that researchers observe human dignity when encouraging active participation from research participants. Rule and John emphasise that research has to be conducted according to acceptable standards of practice and without fraud, deception or dishonesty. According to Punch and Oancea (2014), the principle of autonomy and respect are key in the research process. It is essential to ensure that participation is voluntary, and it must be based on providing informed consent. ‘Informed consent’ means the researcher must provide participants with the topic of the research, the rationale behind the topic, the expected procedures to be followed, the possible risks which the participants might encounter during the proceedings and the possible benefits the participants might access as a result of the study, so the participants can decide whether to participate or not. Punch emphasises that ensuring the research process is confidential is another way of ensuring respect for participants. This process was ensured as outlined above.
Furthermore, to ensure anonymity, all participants were given pseudonyms as shown in table three.
97 Table 3: Anonymous naming of support group research participants.
The support group participants are referred to anonymously as follows:
Fathers-to-Fathers
Chapter 6 Sticks, Lucky, Rocky, Zabie, Soony, Nicky, Nkaoza, TeeBee, Lepzer, Zille, Docky, Madala (Elderly-man) and Zaga. All names are used as is in the study because even participants themselves never referred to each other as ‘Ntate’ in their group. Every member was called by his name without any salutation.
Mothers-in-law
Chapter 7 Mrs Brown, Blue, Grey, Black, Snow, Red Rose, Apple, Peach, Plum, Nuts, Lady Bird. Each name was given the ‘Mrs’ title because group participants always used a salutation ‘mme’ before each member’s name was called.
Mixed Support Group
Chapter 8
Participants are distinguished as male or female as follows: Mr Timber, Mrs Coal, Mr Chain, Mrs Forty, Mrs Boxer, Mr Range, Mrs Fats, Mr Wool
& Mohair, Mrs Initiator (Pula-Maliboho), Ngaka-ea-Sehlopha (male)
4.10.3 Beneficence
Johansson (2003) argues that the research has to ensure that the benefits of the research for the participants are maximised. It will be seen that the benefits could emerge during data collection times since some of the discussions involved deep thinking leading to behaviour change, while other discussions became an eye opener and provided for specific ways of understanding human behaviour. Moreover, the participants have to enjoy the benefits of their involvement in a research project, from this juncture till the end when data is analysed and presented. They are entitled to know the results and the recommendations emanating from the study. The support groups were promised that on the completion of this study an arrangement would be made with the hospital management to grant permission to gather all support groups for feedback access and share the outcomes of this study. However, there were still some limitations encountered in this study which contributed to the delay in undertaking data collection.
4.10.4 Trustworthiness
In qualitative research, the purpose of trustworthiness is to ensure that the findings of the study are “worth paying attention to” (Lincoln & Guba, 1985:290). Lincoln and Guba posit that trustworthiness in qualitative research means that attention was paid to four aspects, namely:
credibility, transferability, dependability, and confirmability. Credibility refers to whether the data is believable; transferability relates to whether the findings can be applied elsewhere;
98 dependability refers to the appropriateness of data collection methods. Confirmability measures how closely the findings reflected the data collected. During the data collection process, I obtained consent from the participants to audiotape the interviews. I also asked their permission to take notes during the process. This ensured dependability and confirmability of the findings.
In addition, I spent a considerable amount of time in the field during the data collection process to ensure credibility. The three support groups enabled comparison of the data collected as a way of addressing the transferability of the findings.