7.1 Appendix 1: Ethical Research Guidelines
| 1. | HOW WILL INFORMED CONSENT BE OBTAINED? | |
| The Manitoba League of Persons with Disabilities (MLPD), an advocacy organization, has regular information sharing channels which will inform its membership of the opportunity to participate in a focus group meeting for this project. By its very nature, MLPD needs consent from its community base before a project is undertaken, therefore, by actualizing this project, the first level of consent has already been achieved. | ||
| Consent from participants can be achieved through the development and utilization of an ethical consent form which would incorporate: | ||
| verbal and written explanations using alternate format for those participants with literacy/reading difficulties; and, | ||
| consultation with attorney Sherri Walsh for suggestions re: legal protocols involving informed consent in research. | ||
| 2. | HOW WILL YOU MAKE IT CLEAR TO PARTICIPANTS THAT THEIR PARTICIPATION IS VOLUNTARY AND THAT THEY MAY WITHDRAW FROM THE STUDY AT ANY TIME THEY WISH TO DISCONTINUE PARTICIPATION? | |
| An integral part of introducing the project to participants will involve a presentation of a thorough project overview (i.e. who’s doing the project, why it’s being done, how and where it’s being done, who will be involved as participants, who will be involved in collecting data, who will see the end results.) This overview should be presented to each participant in written &/or alternate format, and should also be explained verbally at the beginning of each focus group meeting. It is during this time that it will be made clear that voluntary withdrawal from the project at any time is within each participants’ prerogative. | ||
| It is also during this introductory process that participants will be informed that, should they decide to withdraw from the project, any and all comments/ contributions they had made prior can be removed from the proceedings documentation collection tool if they so choose. | ||
| 3. | WHO WILL HAVE ACCESS TO THE GATHERED DATA AND HOW WILL THIS BE COMMUNICATED TO PARTICIPANTS? | |
| The researcher will have access to the primary data, and will be responsible for the gathering and confidentiality of all data. No names or locations will be attached to data presented to such relevant groups or individuals as project stakeholders, government bodies, project participants, other interested groups such as disability organizations, groups dealing with end-of-life issues/DNR Order issues, etc. The final report and summaries of the report will be distributed to MLPD membership via the regular MLPD information sharing mechanisms (i.e. committee meetings, board meetings, the annual general meetings, newsletters.) The final report and summaries will also be distributed to the Council of Canadians with Disabilities (CCD) for use within its organization (i.e. newsletters, meetings.). Sign up sheets will be provided at focus group meetings for those participants who want to obtain the final report, including a preference option for the media in which the material should be presented. | ||
| 4. | HOW WILL CONFIDENTIALITY BE MAINTAINED? | |
| Information collected from participants will be recorded in such a way that it will in no way identify individual participants to their points of view. Minutes of the meetings will be recorded without attributions for particular comments or recommendations. Furthermore, no names or locations of meetings will be attached to specific data in the reporting mechanisms of the project. An agreement will be signed by any and all staff or volunteers handling data or having involvement in other aspects of the project. All data concerning particulars re: participants will be handled by MLPD project staff only. | ||
| 5. | HOW WILL DATA BE STORED? (FOR HOW LONG, WHEN WILL IT BE DESTROYED, ETC.) | |
| All data will be stored on consumer disks and paper copies of notes and minutes in the care of the project coordinator at her home office &/or the MLPD until project completion, at which point it will be destroyed. | ||
| 6. | HOW WILL DATA BE RECORDED? (INSTRUMENTS, NOTES, ETC.) | |
| audio cassette | ||
| notes (written and typed) | ||
| survey materials | ||
| floppy disks | ||
| flip charts | ||
| minutes of meetings | ||
| 7. | WILL PARTICIPANTS BE PAID FOR TIME SPENT TAKING PART IN THE RESEARCH STUDY? | |
| No monetary reimbursement will be provided for participants. Each participant can indicate whether or not they wish to receive a copy of the final report upon completion of the project. Each participant will receive a thank you letter from the project coordinator for her/his involvement. | ||
| 8. | WHAT ARE THE PLANS FOR FUTURE USE OF DATA AS PART OF THIS STUDY OR USE BEYOND THIS STUDY? | |
| Raw data will not be used in any future study. The completed study as presented in the final report will be used as a basis for drawing up a working document, essentially a “will to live” template to be used by persons with disabilities and others who want a more active role in determining their treatment in critical medical situations. This will be used to inform future MLPD decision-making regarding fundamental human rights, particularly as they pertain to changes in policy development at the provincial government level regarding DNR Order application policies, and other policies which affect the well-being of persons with disabilities. | ||
| 9. | WHAT ARE THE POTENTIAL BENEFITS TO PARTICIPANTS? | |
| This project will provide participants with an opportunity to think about, develop and articulate concerns regarding treatment (or lack thereof) during critical medical situations. A second benefit is the opportunity for peers to meet with others experiencing similar concerns and fears regarding possible future end-of-life treatment or lack of treatment, and patients’ rights. An important benefit is the option on the part of participants to develop a “will to live” template which could be used to assist persons with disabilities articulate what type of health care they want under various circumstances. The MLPD has been made aware of consumers having DNR Orders placed on their charts against their or their proxy’s own wishes. The benefit the MLPD is seeking is to improve consumers’ access to the type and level of health care interventions they believe best suited for them. This project presents an opportunity for consumers to be part of a much larger “picture” that could change existing health care policies at the provincial government level so that the rights of persons with disabilities and others would be ensured in critical medical situations. The CCD, through its various provincial organizations will communicate this information nationally to consumers across Canada, thereby significantly increasing the numbers of persons who could benefit of from this project at a national level. | ||
| 10. | A) | WHAT ARE THE BURDENS/COSTS TO PARTICIPANTS? (e.g. MONETARY, TIME INCONVENIENCE, EFFORT) |
| The kind of cost for participants associated with this project would be one of time (becoming acquainted with some project materials in preparation for a focus group meeting; participation in actual focus group event) | ||
| B) | IS THERE A RISK TO THE SUBJECT? IF YES, WHAT IS THE NATURE OF THE RISK? | |
| There may be the risk of some participants experiencing emotional discomfort when discussing end-of-life issues. No other foreseeable risks are anticipated. | ||
| 11. | WHAT ACTION DO YOU PLAN TO TAKE TO MINIMIZE RISKS? | |
| The project staff will inform participants of the possibility of sensitivity and emotional discomfort they may feel in discussing these issues. It will be important, therefore, for the project staff to facilitate and maintain a safe environment during the meeting This includes providing an option for participants to take a “time out” of the session or leave the session as need be. A handout of counseling options in the community can be handed out at each session. If an unanticipated risk should arise, the project coordinator, in consultation with MLPD and the Project Advisory Committee, would assess the situation and take appropriate steps to eliminate or minimize the risk. | ||
The Will To Live Template Project - Contents
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