LETTER OF INFORMATION FOR ONCOLOGISTS COMPLETING QUESTIONNAIRE

Title of the Research Study: Towards integrated care of the breast cancer patient:
Perspectives on the challenges and opportunities of medical pluralism in a multi‐cultural society.

Principal Investigator/researcher: Mrs Jennifer Ducray (MMedSci)

Co-Investigators/supervisors: Prof AHA Ross (DTech, MTech, PG Dip, BMus); Prof CC Jinabhai (BSc, MBChB, M Med (CM) FFCH (CM) MD)

Brief Introduction and Purpose of the Study: There are many different kinds of health treatments available in South Africa, both from professionals and in health shops. When diagnosed with an illness such as cancer, patients often find themselves having to decide what treatments or health practices they should include or exclude. This research study is exploring what alternative therapies breast cancer patients are choosing to use together with their mainstream therapies as part of managing their breast cancer. These alternate therapies include some more widely accepted therapies (such as special diets or physiotherapy) as well as therapies which would be considered to fall outside of mainstream medicine (such as traditional medicine, acupuncture or homeopathy). Besides looking at what additional approaches cancer patients are choosing to use, the study will also investigate the opinions of oncologists towards such use. It will explore how the array of complementary and alternative therapies affect the experiences of the patient, both positively and negatively. The insights from this study will contribute to the discussions on the role of alternative therapies in cancer management as well as the growth of integrative oncology practice in South Africa.

Ethical approval details: This research project has been assessed and approved by the Institutional Research Ethics Committee (IREC) of the Durban University of Technology (DUT). The ethics reference number for the project is IREC 043/18 and the Research Ethics Administrator can be contacted on 031 373 2375.

Participation: Participation in this research study is completely voluntary. For the patient aspects of the study, only female patients over the age of 18 who have received treatment for breast cancer in the last 5 years from a practitioner in KZN may participate. For the oncologist aspects of the study, only oncologists who practice in KZN may participate.

Outline of the Procedures: The research project will take place in two stages. Firstly, a survey consisting of questionnaires will be conducted amongst breast cancer patients and oncologists. Approximately 350 patients and 40 oncologists from the greater Durban area will be answering questionnaires. This is the stage you are currently agreeing to take part in. The questionnaires will include questions concerning your views on the role of nutrition, supplements and exercise in cancer. It also includes questions concerning any TCAM training you may have received or would be interested in receiving; and your views on integrated oncology. The questions related to race and culture will only be used to assist the researchers in interpreting your choices. The time taken to complete a survey should be 15‐20 minutes. This survey will be followed at a later stage by personal interviews for those who might be interested to participate further. If you are interested in participating in the later phases, please indicate this on the last page of the questionnaire.

Risks or Discomforts to the Participant: As this interview is seeking insight into current practice and opinion of oncologists WRT TCAM, it may elicit feelings of discomfort. Please be as honest as possible and feel free to express your opinions openly, as your views are critical to the understanding of the role of TCAM in oncology in South Africa. Confidentiality is an ethical priority for the researcher and procedures have been put into place to ensure confidentiality (see below).

Benefits: This research is being conducted towards a PhD and the researchers hope to publish findings in peer‐reviewed journals. There is no immediate gain for the patient participating in the study, but the insights gained from the study will hopefully assist future patients and oncologists in managing numerous therapeutic options.

Withdrawing from the Study: You may choose to withdraw from the study at any point, and there will be no negative consequences should you choose to do so.

Remuneration: Participation in the questionnaire is completely voluntary and participants will not receive any payment for participating.

Costs of the Study: Your participation in this questionnaire will not result in any costs for you.

Confidentiality: Participation will be kept completely confidential, and all information from the questionnaires will be treated with respect and stored in a way that ensures the information remains confidential. The only page that will display your details is the consent form which will be handed in and stored separately from your questionnaire. Answers from the questionnaires will be entered into a computer and an extra copy on a separate hard drive. No identifying data such as name and contact details will be entered together with the data. Your answers will be pooled together with answers from other oncologists to form data that will then be analysed. The computer files will have a password known only to the researchers. Only the researchers and Ethics committee may access the research records. The pooled data and analyses will be the property of DUT and used for medical publications and presentations. No personal questionnaires will be presented, only pooled data. Data will be stored for five years after which it will be destroyed by shredding (in the case of paper questionnaires) and digitally destroyed using Windows "data‐wiper" (in the case of electronic data).

Persons to Contact in the Event of Any Problems or Queries:
Main researcher (PhD student): Mrs Jennifer Ducray (tel no 031 373 2396 email jenniferd@dut.ac.za)
Main supervisor: Professor Ashley Ross (tel no 031 373 2620 email ashleyr@dut.ac.za)
Institutional Research Ethics Administrator: Ms Lavisha Deonarain (tel no 031 373 2375 lavishad@dut.ac.za)
Complaints can be reported to the Director: Research and Postgraduate Support, Prof Carin Napier on 031 373 2577 or carinn@dut.ac.za