LETTER OF INFORMATION FOR PATIENTS 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.
Mrs Jennifer Ducray (MMedSci)
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. When diagnosed with an illness such as cancer, patients often have to decide what treatments they should include or exclude. This research study is exploring what alternative therapies breast cancer patients are choosing to use either instead of, or together with their mainstream therapies as part of managing their breast cancer. 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
Ethical approval details:
This research project has been 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 in this research study is completely voluntary. Only female patients over the age of 18 who were diagnosed with cancer in the last 10 years and have received treatment for breast cancer in the last 5 years from a center in the greater Durban area may participate in the patient Questionnaire.
Outline of the Procedures:
The part of this research project that you are agreeing to take part in, is a survey consisting of questionnaires. About 350 patients and 40 oncologists will be answering these questionnaires. The questionnaires will include a few basic questions about your cancer, and questions on the kinds of extra treatments you used for helping fight your cancer or manage side‐effects. The time taken to complete a survey should be 15‐20 minutes. (This survey will be followed at a later stage by small discussion groups and some personal interviews for those who might be interested to take part further. If you are interested in participating in these parts of the study, please indicate this on the last page of the questionnaire).
Risks or Discomforts to the Participant:
This questionnaire should not result in discomfort of any sort. There are really no right or wrong answers, so please feel completely comfortable when making your selection of answer or describing your feelings. If any questions made you feel uncomfortable or if you
need advice, please speak to one of the researchers using the contact details at the end of this information sheet.
This research is being conducted towards a PhD and the researchers hope to publish findings in medical 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 treatment 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.
Participation in the questionnaire is completely voluntary and patients will not receive any payment for participating.
Costs of the Study:
Your participation in this questionnaire will not result in any costs for you.
All information from the questionnaires will be stored in a way that ensures that your participation and answers remain confidential. The only page that will display your details is the consent form which will be stored separately from your questionnaire. Answers from the questionnaires will be entered into a computer. 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 patients to form data that will then be analysed. 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. 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
Main supervisor: Professor Ashley Ross (tel no 031 373 2620
Institutional Research Ethics Administrator: Ms Lavisha Deonarain (tel no 031 373 2375 email@example.com
Complaints can be reported to the Director: Research and Postgraduate Support, Prof Carin Napier on 031 373 2577