Ethnographic fieldwork does not begin when the researcher gains entry into the study site for data collection; rather, it commences with negotiation for access to the site, event or the participants (Hammersley and Altkinson, 2007). This process began informally several months prior to the fieldwork by contacting the head of PCU and formally by seeking ethical approval, for the purpose of safeguarding the participants’ dignity, rights, safety and wellbeing in line with UK Policy Framework for Health and Social Care (UK PFHS, 2018). I obtained ethical approval from the University of Northampton Research Degree Board and the Research Ethics Committee; following the submission of the research proposal and ethical considerations. Also, a letter of research approval was also given by the Hospital Research and Ethics Committee
following their review of the research proposal (see Appendix C).It may be relevant to
point out that gaining formal ethical approval was less problematic than negotiating access to the hospital, event and the participants through the gatekeepers. These
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problems were reflected upon and are presented in the section about reflexivity in the latter part of this chapter. Some of the ethical issues considered and how they were addressed are presented next.
3.6.1 Ethical considerations Informed consent
Informed consent was gained from all the participants as an aspect of maintaining their autonomy. Following the recommendations by Antoniou et al. (2011), the participants were provided with adequate information about the research (see Appendix D), presented in a plain English, so that they were capable of comprehending the information in order to make the decision about whether or not to participate in the study. However, it was necessary to translate the participant information sheet into the Igbo language for a few patients and their relatives, who were unable to understand English. Translation into Igbo was done by me as previously explained above in section 3.5.2.1.
The participants were provided an opportunity to ask any further questions about the research if they wished. This was followed by handing them a copy of the consent forms (see Appendix E). The participants were given up to two weeks and a minimum of 24 hours to sign the consent form to say that they were happy to take part in the study. The participants were informed that they could withdraw from the research at any time without reason and their data destroyed if it has not been anonymised. Extra care was taken to ensure that patients and their relatives did not feel that they were coerced to participate in the research, by making them to understand that any decision made regarding participation in the study would not affect their care. Specifically, I sought consent from only terminally ill patients who had the capacity to provide their consent after reading through the participant information sheet.
Ethnography also requires process informed consent, which entails continuous negotiation and renegotiation of the access to various people and activities. This requires the ethnographer either to seek to maintain the initial informed consent or to gain fresh consent to observe new interesting routines (Plankey-Videla, 2012).
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Following the initial consent, I sought verbal consent from the participants at the start of each daily observation, due to the long immersive nature of the study. I also renegotiated consent to observe additional activities from new participants to gain a comprehensive understanding of the emerging cultural domains.
Confidentiality
Confidentiality can be referred to as safeguarding information obtained during and after field work (Toffoli and Rudge 2006), in keeping with principle of non-maleficence and respect for autonomy (Jahn, 2011). Several measures were taken, which included but not limited to, anonymised personal details of the participants, headphone usage during transcription to ensure no one listened to the interview audio, and data being
kept in password protected computer files. All the information in the field notes and
the interview transcripts which could lead to identification of participants were removed and pseudonyms used during reporting of the findings, as will be applied in all future publications. The consent forms were stored under lock and key. Generally, the university guidelines regarding data storage were followed.
3.6.2 Potential risks and ethical issues specific to the study Boundaries of observation
There were so many activities that went on in the studied organisation that, as acknowledged by DeWalt and DeWalt (2011), it was practically impossible to observe all the activities in this social situation. I was particularly conscious to conduct observation within the scope of my ethical approval but encountered challenges about deciding what was and was not data in my efforts to uphold the privacy, respect and autonomy of the participants. The nature of the care environment and activities of the PC team exposed me to activities of other professionals within the studied hospital. It was an ethical dilemma to restrict my observation to the activities of the PC, especially when the roles of other professionals were connected to the care of terminally ill patients. However, I resolved to remain guided by the objectives and focus of the study, but renegotiated additional ethical approval to observe some of the interesting activities of other professionals involved with care of the terminally ill patients because it was necessary to the understanding of the emerging cultural patterns. O’ Brien
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(2006) noted that everyday realities are unpredictable and are largely shaped by context and unforeseen circumstance; thus, being prepared to adjust to different ethical dilemmas and field circumstances was necessary for the success recorded in my field work, as also highlighted by Li (2008) in her reflection on ethnographic field work. Re-awakening negative feelings and emotional suffering/distress
Observing the care of terminal and dying patients has the potential to reawaken negative feelings and emotional suffering on the part of the researcher. Also, listening to the interview audios during transcription is another typical activity that may arouse strong negative feelings. If not managed, this could lead to emotional distress or even depression. In addition, negative feelings and emotional distress could be awakened for terminally ill patients, patients’ relatives, and other participants during the interviews. Although I have some necessary clinical expertise to care for this group of patients, plan for psychological support was made in the studied hospital should I, the patients, patients’ relatives or other participants, become distressed. In addition, an assessment of the potential risks to myself and the participants was carried out throughout the research process to maintain maximum safety, with some corresponding strategies to reduce the chance of emotional distress and other risks (see Appendix B).
Nurse-Researcher dilemma
The nurse-researcher dilemma is one of the inherent problems in ethnographic research that has been encountered by some previous doctoral researchers (Seymour, 2001; Costello, 2001). A situation arose during the fieldwork in which I encountered a dilemma about either to act in full capacity for patient advocacy, in line with my professional responsibility, or to act within the ethical clearance, as an honorary nurse in the studied hospital. This ethical dilemma and how I resolved it, is presented in the reflexivity section of this chapter.
Another ethical issue that might have occurred in this study would have been if any inappropriate or harmful practices were observed during participant observation that could have caused harm to the patients, and also if anything was disclosed by the
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nursing staff or any other member of the PC team during informal conversations or formal interviews that could have been of importance to the care of the patients. Although I did not experience such a scenario, I had planned to follow the organisational procedures to handle such issues if such a situation had occurred.