Dear participant
You are invited to participate in the study exploring Nephrology Nurses’ lived experiences of caring for dying patients with End Stage Kidney Disease (ESKD) following withdrawal of dialysis.
The objective of the study
Terminal care for this group of patients with ESKD is different in many ways in that the time-frame from dialysis withdrawal to death is often short. Withdrawal from dialysis is most frequently due to financial and resource constraints, dialysis access failure (arteriovenous fistula, hemodialysis or peritoneal catheters) and comorbidity.
156 Caring for dying patients with ESKD after dialysis withdrawal may cause nephrology nurses to experience prominent level of death anxiety, guilt, inadequacy and even helplessness. This may be due to long and deep bonds that have formed over many years.
It is hoped that the nurses’ experiences will offer recommendations for their own emotional well- being and educational requirements to better prepare themselves to cope and grieve.
The phenomenological conversation
The researcher plans to conduct the phenomenological conversations with the participant in a suitable venue in the study setting ensuring privacy and non-interruption of the phenomenological conversation, lasting approximately 45 to 60 minutes (It might be longer). This will be done according to your indicated convenient time.
Please note that phenomenological conversation is a form of semi-interview in which the researcher and the participant are both engaged in dialogue about a phenomenon. In this study, we will be sharing the Nephrology Nurses’ lived experiences of caring for dying patients with End Stage Kidney Disease (ESKD) following withdrawal of dialysis.
Once the first phenomenological conversation’s transcription is completed, a feedback session appointment will be set up. A second phenomenological conversation may be required to authenticate the unravelled information from the initial phenomenological conversation.
Confidentiality of responses
To adhere to the confidentiality principle during the study, you will choose your own pseudonym which will be assigned for your conversations. Your anonymity will be protected at all times. Only the researcher will know both your name and your chosen pseudonym. The phenomenological conversations will be recorded on audiotape. You will be required to sign consent form prior to the conversations and feedback sessions to guarantee the audio-record permission, and in addition to use the information you have provided when the study is being written up.
All original information from the phenomenological conversations will be kept in a secure locked cabinet. When the transcriptions are finalised, any electronic recordings taken during the information gathering will be encoded and stored on a CD or USB Flash Drive. Those original digital recordings will be deleted. No raw information with your identifying information will be accessible to any person other than the research team of this study. However, given the nature of the study, the highly
157 specialised topic and the small sample size, despite all measures taken to protect the confidentiality, it is possible that participants may be identifiable in any ensuing dissemination of the study findings as for example direct quotes used in publications.
Benefits to individual participants and potential societal benefits
You will not directly benefit from participating in this study, however your participation will contribute to knowledge of the experiences of nephrology nurses caring for dying patients with ESKD after dialysis withdrawal with whom they had an existing bond. You will also gain knowledge about how to cope and grieve after the deaths of patients with ESKD. The study’s results may provide the nurse managers a better understanding of the challenges faced by the nephrology nurses caring for dying patients with ESKD and in doing so, finding a way of overcoming those challenges. There will be no remuneration in participating in the study, but refreshments will be made available during the phenomenological conversation
Risks associated with the research study
The researcher acknowledges that this is a very sensitive research area since it will be exploring the aspects of care that may be uncomfortable or distressing. In this case if you experience any distress or discomfort during the phenomenological conversation, the session will be suspended, and a debriefing session will be provided immediately by the researcher and if necessary, provides referral resources for further psychological support. The researcher will make sure that you are safe throughout the study. In addition, given the nature of the research topic, it is possible that this study might highlight the resource allocation issues around nephrology dialysis and the associated ethical concerns. It is possible that you may not feel comfortable to talk about resource allocation issues because of potential consequences for current or future employment as a nephrology nurse. The researcher will assure your confidentiality and you are not compelled to share things that you are not comfortable to do so.
Right to withdraw
Please be advised that there is no obligation to participate in this research, your participation is voluntary. You can withdraw at any time even in the middle of your questionnaire, without any
158 consequence or penalty. Once you have withdrawn from the study all information that you have provided will be omitted from the study and destroyed.
Dissemination of the findings
Once the study is completed, the researcher will present the study findings in the form of the research report and this will be submitted to the University of Cape Town for examination as a Masters’ thesis. The research report will be made available to your institution and at the Human Resources (HR) of the dialysis provider company. The researcher also plans to have an oral presentation of the findings in a conference when offered an opportunity. The results will be published in both local and international journals
The permission to conduct this study has been approved by the Faculty of Health Sciences Research Ethics Committee (HREC № ) University of Cape Town and the HR from the selected dialysis units.
Contact details
If there are any queries about the study or to participate in the study, please contact me (DB Bidii), on my cell Number 0725817643 or send me an email at [email protected].
Participants can also contact my supervisor Dr N Fouché, at 0214066672 or email
If you have any concern about the ethical conduct of this study, please contact the UCT-FHS Human Research Ethics Committee, the University of Cape Town on +27214066338. Or write to Shuretta Thomas, Human Research Committee, Room E52-24, Old Main Building, Groote Schuur Hospital, Observatory 7925, Cape Town, South Africa
159
University of Cape Town
Department of Health and Rehabilitation Sciences Division of Nursing and Midwifery Mr Dempto Boniface Bidii Cell No: +27 725817643 E-Mail: [email protected]
May 2017
Appendix B: CONSENT FOR PHENOMENOLOGICAL CONVERSATIONS AND
FEEDBACK SESSIONS
Agreement and signatures
I, ……… .(research participant) have read and understood the information sheet and do hereby give consent to participate in this study. I have been explained and understood the nature, the purpose and method of this study and agree to participate as long as my confidentiality will be observed as outlined above. In this consent, I agree that the conversation transcripts with my identity concealed, can be used for the purposes of this study and thereby guarantee the permission to audio-record the conversation.
Signed: ……… Preferred Participant Pseudonym: ………... Date………
I, DB Bidii (researcher) undertake that the right to confidentiality of the participants and all information obtained as a result of conversations with them will be highly respected.
Signed: ……… Date: ………
160
University of Cape Town
Department of Health and Rehabilitation Sciences Division of Nursing and Midwifery Mr Dempto Boniface Bidii
Cell No: +27 725817643 E-Mail: [email protected]
May, 2017