4.3 Methodology of autoethnography
4.4.4 The core values
Three core values which make up the collectively acceptable foundation for research ethics is extrapolated from Gostin (1991) and Weijer (1999), is centralized in my study: Respect for persons, Anonymity, Beneficence and Justice
Respect for persons entails an alertness and pledge to affording participants protection from manipulation of their sensitivities,where autonomy may be diminished. Anonymity to be
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implemented.Respect for communities places a duty on the researcher to uphold, preserve and respect tenets and securities and minimising potential for harm. Beneficence requires an obligation on the part of the researcher to minimise risks and capitalize on benefits that could be added to participants. Justice is associated with reasonable spread of both risks and rewards arising from research. The idea is that those who participate, with the inherent risk and
responsibility of participation, should inherit and share in profits of knowledge grown.
In articulating my study with these core values, I adopted the following approach.
Respect for persons: The dignity of all persons participating in this study is valued.
Appreciation of the core values ensured that people were not used as a means to accomplish research purposes. I remain open and available to allow informants to interrogate my views, and for my morals to be probed by others. The commitment to respect persons participating in the study is to implement informed consent and ensure confidentiality (Patton, 2002). All schools and persons associated with the institutions are presented anonymously. The same applies to direct or indirect references to medical persons.
Anonymity referring to guarding the privacy of informants is a key principle in this autoethnography and qualitative research; however, handling it, in action, was far more complex. The views of Walford (2005), Swain, Heyman and Gillman (1998) and Tuffrey- Wijne, Bernal and Hollins (2008) were carefully considered as they expressed the diversity of concerns that are possibilities in the context I faced and each one with valid reasoning.
Walford (2005) questioned whose interest is served and whether liberties may be taken by researchers when participants are undisclosed. I found the sentiments of Swain, Heyman and Gillman (1998) resonate with this study. They say that persons with any form of learning difficulties may be filled with pride on account of their involvement and may desire to take ownership of their contribution and be willingly identified. The cautionary voice emerges from Tuffrey-Wijne et al. (2005) that careful consideration must be assigned on decisions and consequences since anonymity of the broader association and relationship to the participant, cannot always be effectively and securely predicted. Attending to “Respect for communities”
placed the obligation on me to maintain integrity, values and wellbeing of the DS community
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central to this study and, as strive to offer shelter from hurt. Anonymity and confidentiality with vulnerable persons will contribute to the intent which is to focus on issue of access from personal perspective whilst including its effect on others in similar circumstances..
At the end it was my carefully considered decision to disclose the name of my child for the following reasons:
She is a vulnerable child. She is unable to read or write but when told that Mommy is telling a story about her to her friends, she responds with rhythmic clapping. She needs some
personalized attention with managing herself and cannot take care of herself or all of her needs independently.
She is of the group of marginalised people in our society. This study is an acknowledgement of our only daughter who is important to us. She has a distinct identity by which she must be recalled and remembered.
She may not be able to read for herself (as yet) but we know her contribution is immense for the community of fellow travellers. Her silence at times or limited speech facility at most times is perhaps more powerful alongside the words I have used to articulate this journey. Her story may be etched for posterity, living in the words which she may never be able to
construct in her lifetime.
I was reliant on the “Health Professions Council of South Africa” (HPCSA) for guidelines on all aspects related to ethics since this study is located in the South African context. I will now explain how informed consent within the approved code of practice was achieved. Informed consent is the instrument indicating participants informed decision to be or not to be involved.
Informed consent is a valuable process, safeguarding and upholding respect of persons and their contribution during research. The process of participation is limited to parents of children with Down syndrome, agents and non-profit organisation representatives. Details of what my research entailed, incorporating a balanced perspective of possibilities and
advantages, are explained verbally and clarity is offered where required. A form capturing the details of the research is read and signed when the participant is satisfied. Further signatures of the researcher, and witnesses, completes the written procedure. Informed consent was necessary for this particular qualitative autoethnographic study. The actuality of being both
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mother and researcher necessitates the insertion of an impartial critical ‘co-researcher’ via informants, to avoid positioning myself as the only knower of the experiences described. I admit the need for proxy consent on behalf of my daughter who is central to the chronicles disclosed. “Consent of a parent or legal guardian is legally required for children and may also be sought where the potential participant is determined not to have the mental capacity to consent” is advised by Strode, Lack and Essack (2010). Tiara has limited capacity to consent.
Proxy consent is rarely considered ideal, but rather a necessary compromise. To address purposefully this aspect of the process in my study, I submitted a letter of motivation to the family specialist physician (see Appendix B) to give consent or assent to her being mentioned in this study, in first person and not as a non-de-plume. The letter of motivation sent to him, was returned with his approval. The doctor’s approval suggests that every reasonable step be taken to ensure that her personal dignity or right to privacy is not violated.
Conducting consent procedure with key persons, whose comments and views are inserted in this study, was done one-on-one in an agreed upon place and time. The language used was English and pitched at a level that the participant could understand. All participants were notified that they were free from compulsion or undue pressure to participate. Informants could agree to a written or oral permission. The requirement for informed consent, however, is not waived.
The aspects that will be elaborated upon include the following:
Explain the purpose of the research.
Explain expected risk and not just tout the advantages
Emphasise, that voluntary involvement, implies the option to withdraw without negative consequences.
Clarify how privacy might be protected.
Provide my personal information and details of the processes should any
person require clarity about the pre-, during-, and post- participation in the period of the study.
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I recall one of the processes in place prior to formal acceptance as a PhD candidate was to defend my proposal (subsequently renamed as peer review), which I did with a power-point presentation. At the conclusion of my presentation I waited for more than an hour before I was invited in for feedback compared to other candidates who waited no more than twenty
minutes. I was told that my proposal is flagged ‘red’ to denote area of focus, a vulnerable child, intellectually impaired. It was during this waiting period that I deliberated on aspects which I may be asked to elaborate. Ethics was central to the feedback and discussion.
Following this university defense process I had to await communication from the review process and, when I received the letter of approval (see Appendix A) to proceed with the study, I foregrounded the critical nature of ethics throughout the writing process, emerging from the review.