Transplant Coordinator Focus Groups
7.12. ETHICAL CONSIDERATIONS 1. Research approval
My research was approved by the Human Research Ethics Committee (Medical) of the University of the Witwatersrand. I submitted my study to the ethics committee in two phases. The first phase was the transplant professional interviews and coordinator focus groups (Appendix 15) and the second was the donor family interviews and living donor focus groups (Appendix 16). I decided to divide the ethics applications because the ethical issues encountered when sampling health professionals were different to those when sampling donor families and living donors, and will be discussed in more detail in this section.
7.12.2. Confidentiality
Three of the seven transplant centres in Gauteng are located in state hospitals. One of the seven centres has the capacity to perform heart-lung transplants. The
characteristics of these transplant units vary between hospitals. Most have an office which is staffed primarily by transplant coordinators. Although integral to the team, medical professionals (surgeons and physicians) and allied professionals (nurses, social workers and psychologists) are often based in their own departments and feed into the transplant programme only when their services are required.
Given there are so few permanent staff members, characteristics such as language or hospital name become significant identifiers in a transplant unit. Furthermore, only a few healthcare professionals with specialist skills undertake transplants in each centre.
For instance, a hospital with a transplant centre may only have one harvesting surgeon and one transplant surgeon. These individuals are identifiable by hospital name, specialty or other physical and professional characteristics. Fortunately, the structure of most transplant centres is homogenous. Each centre has a number of coordinators, medical and allied professionals whose function and role remains the same, no matter what transplant unit they are affiliated with.
Writing this thesis demanded careful measures for protecting the identities of study participants. The prerequisite of confidentiality has posed challenges when balancing ethical investigation with the requirements of rigour, which demand detailed
descriptions of study sites. I believe that all steps should be taken to ensure that research is as ethical as possible. Thus, in order to maintain the confidentiality of participants, descriptions of research settings (Sections 7.7, 7.8) are deliberately vague, and any identifying characteristics have been omitted from them. There is some precedent for omitting this type of identifying information in order to protect participant confidentiality. Runkel (2013) undertook her study at a private hospital in Gauteng and has omitted the name of the institution from her research report in order to enhance confidentiality. Some of the transplant centres in Gauteng were not
included in this study, and some referring hospitals were not included in this study.
7.12.3. Informed consent
Written informed consent was obtained from all the study participants before the interview or focus group discussion began. Informed consent is constitutionally mandated in South Africa, within the right to Freedom and Security of the Person (Constitution of the Republic of South Africa, 1996). It is realised as a legal
requirement of all healthcare provision in the National Health Act, No. 61 of 2003, which outlines specific parameters for informed consent and provides consent
regulations for research with human participants. According to this Act, written consent must be obtained from all potential participants once they have been
informed of my research objectives and possible consequences of participation or non-participation (National Health Act, No. 61 of 2003). The consent document used for my study consisted of two sections, the first expressing agreement to participate in the interview, the second permitting tape recording of the interview (Appendices 10, 11, 14, 17, 18,).
7.12.4. Ethical issues unique to research participant groups
Transplant professionals
The main ethical challenge which these interviews posed for me was the mandate of maintaining confidentiality. Although healthcare professionals are not a vulnerable group20 in my research context, a number of those who participated are highly identifiable due to the characteristics of their work in transplant. Throughout the process, from recruiting healthcare professionals to finishing the interview and subsequent follow-up, participants were ensured that confidentiality would be maintained. This was possible, firstly, through keeping all the participant’s details separate from the data and then keeping this data in a secure, locked area; and secondly, by dividing participants into two categories – medical professionals and allied professionals. Writing this report without reference to the specific job titles of the participants was necessary to further protect their identities and to maintain confidentiality.
Transplant coordinators
As with the healthcare professional interviews, the main ethical challenge which these focus groups posed was that of maintaining confidentiality.
When it came to writing up my research, I considered whether or not transplant coordinators were easily identifiable on an individual level. It is argued that they are
20 A vulnerable group is typically defined as one which lacks certain human rights or liberties which render them vulnerable to exploitation. They are generally thought to include the impoverished, illiterate, children, prisoners and the elderly – amongst others (Zion, Gillam & Loff, 2000).
less identifiable than other transplant professionals in this study because several coordinators are employed in different capacities at numerous locations. For instance, a centre may have only one social worker, who would be highly identifiable. However, the centre will employ five or six coordinators – some of whom work across other regional locations - making them less so. Hence, transplant coordinators are specifically identified according to their job title in this thesis. The specific roles of coordinators – that of either donor coordinator or recipient coordinator – are not specified.
Potential breach of confidentiality by another participant was addressed throughout the focus group process. Participants were reminded that their confidentiality could not be guaranteed because individuals cannot be prevented from discussing the group with others. Before the group commenced, participants were specifically requested to refrain from this, and the implications of participating were reiterated. Coordinators were also given the opportunity to excuse themselves from participating should they feel uncomfortable about confidentiality implications, and were made aware that they could leave the group at any time.
Cadaver donor families
The main ethical challenge posed by interviewing family members was the risk of psychological harm and how this might be mitigated. I addressed these challenges on two levels. Firstly, during the interview process I made use of several consent and interview techniques specified by Rosenblatt in his article entitled Ethics of Qualitative Interviewing with Grieving Families (1995). These included using non-verbal
communications which display empathy, engaging in active listening as well as getting
“processual consent” (p. 148). Processual consent took place throughout the interview, and it involves giving participants several chances to terminate the discussion or to indicate their willingness to answer certain questions. Whilst all participants were forthcoming about their perceptions and experiences, emotional stress was evident. At these times, I made sure I displayed empathy and gave the
participants space to collect themselves. Although participants were given numerous opportunities to end their interviews, all were refused.
Secondly, I had enlisted the services of a clinical psychologist, with extensive expertise in organ transplantation, as a referral healthcare practitioner in the case that
participants exhibited psychological distress. Participants were made aware that assistance was available at the beginning of the interview, and it was subsequently offered three more times (straight after the interview, in thank-you correspondence and in follow-up correspondence). All offers of counselling and support were refused by participants, and as they were consenting adults, I felt it would be inappropriate to question these decisions.
Living kidney donors
The main ethical challenge in the living donor focus group was the protection of participant confidentiality. Participants were assured that I would not divulge their identities to anyone other than my supervisors. However, participants were also warned that confidentiality could not be guaranteed as I could not prevent individual participants from discussing the group with others. At the beginning of the group, I requested that participants keep the content of the discussion to themselves.
The living donors who took part in this group are not individually identifiable, and hail from a large living donor population in the province. Hence, the backgrounds of participants have been described in more detail than was the case with transplant professionals and coordinators, who were more identifiable.
7.13. DATA
7.13.1. Data treatment
In order to prepare interview data for analysis, I transcribed the interactions with participants from audio to written form. According to McLellan, MacQueen and Neidig (2003) careful documentation of research processes is necessary to ensure robust
qualitative enquiry. This section will provide a detailed account of the transcription process.
As detailed in Section 7.4 above, data collection took the form of numerous
interactions with participants. These were over a period of one and a half years. Given the length of the data collection phase, I transcribed interactions immediately after they had taken place, rather than waiting for all data to be collected and then
transcribing the data set as a whole. It was decided to transcribe interviews verbatim, promoting reliability and trustworthiness of my study (MacLean, Meyer & Estable, 2004). I transcribed all the interactions myself, as they were in English and translation was not required.
I made use of several approaches until finding the one which proved to be most effective. The transcription process had two phases. The first was listening to the interview in a slow mode and typing simultaneously. The second was re-listening to the interview and checking the accuracy of language, spelling and punctuation. This was to ensure that the apparent meaning of the participant’s speech was not lost. I then read over each transcript.
Oliver, Serovich and Mason (2005) argue that transcription of data presents an
opportunity for reflection on the research process and allows one to adapt the process to account for unanticipated issues in the transcription. I found that the interactions were lengthy and transcriptions sometimes took several days to complete. Green and Thorogood (2014) suggest that in some cases where data sets are very large, it may be necessary to transcribe data collected at the beginning of the process in full and thereafter only transcribe certain sections. At one stage, I investigated the possibility of such a transcription technique in order to expedite the process. However, this was discounted as I found the action of typing was much more helpful for familiarising myself with the data than listening to it or reading it. Furthermore, I was concerned that selecting specific areas of data to transcribe could lead to “premature” theory construction and was thus best avoided (Silverman, 2010). Hence, the entire data set, including asides or apparently irrelevant speech and slang, was transcribed.
7.13.2. Reliability of transcription
As I transcribed the entire data set myself, there was no need to meet with other transcribers and translators in order to ensure that the transcriptions were consistent across a transcription team. However, I had an independent research assistant check 10% of the total data set for transcription accuracy. Transcripts were deemed to be accurate, and did not require significant re-transcription or revision.
7.13.3. Data saturation
Questions as to ‘How many interviews are enough?’ endure in qualitative research.
The general consensus is that sampling should cease when data saturation is achieved.
Data saturation occurs when interactions are not producing anything new in terms of themes and ideas (Green & Thorogood, 2014). In their paper entitled How many interviews are enough? An experiment with data saturation and variability Guest, Bruce and Johnson (2006) methodically group and analyse in-depth interviews, making detailed observations about the emergence of new themes and ideas during the process. They conclude that saturation occurs within the first twelve interviews.
However it is acknowledged that this is dependent on the data set and the type of study.
The participants sampled in my study represent various medical and allied health professions, as well as members of the lay public. Each of these individuals holds different views about transplantation, based on their professional background and/or personal experiences. Whilst most participants expressed similar views on specific issues, many also contributed new ideas to the discussion. Hence, data saturation, per se, was not achieved in my research sample as new ideas were continuously
forthcoming – even after interactions with 47 individuals. However, saturation was achieved across some stratifications, such as unified perceptions of communication at various points in the transplant process, across institutions or where healthcare professionals shared views on a specific topic. These views were then confirmed by the transplant coordinators and the donors. However, every interview or interaction
produced new data and I eventually decided to cease sampling because, along with my supervisors, I felt that a rich data set had been generated, which answered my
objectives and where the main points of the transplant process which I addressed in Chapter 4 had been covered. Also, time and financial constraints prevented me from sampling further.
In terms of the living donor focus group, it could be argued that data saturation was not reached because only one group with three participants took place. Similar studies have included a larger number of groups in order to address this limitation, and these studies argue that at least three focus groups per area of interest is necessary (Tong et al., 2008; Tong et al., 2007). However, as shown in Section 7.8, it was challenging recruiting even three donors in my research setting, and this was a strong disincentive to the prospect of recruiting further groups. It could be argued that I should have approached another institution and asked for assistance with recruitment from a different patient cohort, however this was difficult because the other potential institutions were not as willing to provide the necessary resources for recruitment.
Ultimately, I did my best with the sample I was able to recruit, although a larger sample could have added to value to my data set.