Participant Information Statement

Thank you for your interest in this study.

If you are a CBPR researcher I invite you to post on this blog but before you do  please make sure you read the

PARTICIPANT INFORMATION STATEMENT . (Right click and select -Save Link as-  if you would like to download the statement)

Please return to the front page to post your comment.

Thank you

2 thoughts on “Participant Information Statement

    Anonymous said:
    May 9, 2015 at 12:14 pm

    Ethical challenges in community-based projects have included the following:
    for an applied research project the group funding the project may have expectations based on previous experience that can’t be met in the current project. Community-based participatory research by its nature involves community members providing solutions and input into problems that they perceive is important for community health and well-being. These problems may not be budgeted for by the health service, and not be part of national or state health targets that are suitable for funding and administrative support. Individual consumers can feel very strongly about particular health issues that affect their family or local community particularly cancer and drugs in rural areas. Access to support services is challenging due to transport issues and the availability of trained staff to deal with some of these problems, organisations other than the health service may have funding but do not use the health service as part of its service delivery model. There is therefore a disparity between what consumers expect and what the health service can deliver. This can be ethically challenging for the researcher who is caught in the middle of basically a political issue around service funding.
    Further ethical issues are raised by the health disparities in rural communities caused by the social determinants of health. Survival rates for men with prostate cancer is significantly lower in rural communities, however the time frame and scope of this project means that this issue cannot be fully addressed. While other studies are currently underway to investigate this problem, the development of a public health education program in the interim would possibly be beneficial in improving awareness of issues concerning men’s health and particularly prostate cancer. This could not be included in the project.
    Local government has been mandated a key role in community health and well-being however the delivery of these services in rural areas is hampered by a lack of public health knowledge of councillors and Shire administrators, the recruitment of staff is problematic due to a lack of health culture within the organisations, this leads to poor outcomes for youth services and community health projects. As a researcher in a small rural community it would be to to raise these issues without antagonising local community members.
    The use of NGOs to provide mental health and other support services in rural areas is difficult to justify as they have little understanding of the problems facing rural community members, the challenge for the researcher is to highlight these deficiencies without alienating other stakeholders that are important to community members health and well-being.
    As we have seen with the SBS TV show “struggle Street” it is difficult to highlight health disparities without sensationalising them and further victimising participants.
    The real ethical challenge the health researchers in rural areas is how to get across some of the serious health and social problems in rural communities in a manner that respects and supports the participants in the project, while highlighting specific problems that need to be addressed.
    It is important in CBPR to ensure the participants are fully engaged and understand the potential benefits that can flow from the project and that their voice is valid and that the project outcomes will be used to improve both their community’s and individual health and well-being.
    Perhaps, the real surprise is how frank and open community members have been when discussing health issues. This has been widely respected by the group however the researcher doesn’t have any control over what group members say outside meetings and how they may report conversations from the meetings. Gossip is a regular part of rural life and could potentially undermine the credibility of participatory projects. Researchers should be cognisant of this potential problem and highlight the importance of confidentiality regularly in group discussions.


      Elena said:
      May 9, 2015 at 12:49 pm

      Thank you so much for your candid comments. It is interesting to have a perspective that relates to the nuances of rural life. You point to the wider systemic issues which impact on the community and partners, in turn leading to ethical challenges for the researcher. Some interesting food for thought. Thank you.


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