Your CBPR and ethics experience

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If you have read the Participant Information Statement and would like to participate, this blog offers you the opportunity to reflect on the considerations related to ethics in the course of conducting CBPR.

You are welcome to write freely, however some questions that might guide your contribution are:-

  • What were your experiences of ethical considerations in setting up your CBPR project?
  • Outline some of the challenges you encountered at key stages (start up, conduct, closure and dissemination).
  • What were the factors related to ethics that either limited or enhanced your ability to achieve the aims of your CBPR project?
Frank's
The Heart of Town

The early stages of my CBPR project raised questions about ethics for me.   We all know it takes time to build relationships and trust when entering a community as an outsider.  Although I was interested to a certain extent in the conversations in this rural community,  in the early days of getting to know people, I always felt that it was not really ethical to befriend strangers for the purpose of gaining entry to the community and to raise interest in the project.  This was even more difficult as it became evident that community members were reacting to being ‘over consulted/researched’ in recent times – was my presence just exacerbating an already delicate situation?  I suspect I am not alone in grappling with this ethical quandary.  How did you experience the early stages of your project?

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3 thoughts on “Your CBPR and ethics experience

    Anonymous said:
    May 15, 2015 at 12:12 pm

    Hi Elena,
    Your topic is very interesting and challenging, well done for tackling it!.
    The rights of rural community nurses and the people they provide care for were of interest to me in my work prior to starting my research. These nurses are often socially isolated in their work because they may be the only nurse on duty for the day working out in the community on their own and based from a health service where there is little administrative, or medical or managerial support. They often work and manage their service alone trying to help people at ethically and emotionally charged times in their lives when they may be extremely vulnerable to outside influence however well-meaning. Nurses working in rural home carry high levels of relational emotional burden – this has been identified in my own work group and in the research literature. This burden goes unrecognised and is often not acknowledged by the nurses themselves as they battle on their own motivated by the cost effective and beneficial work they do. The ethical challenges they face can involve life and death situations and they often do not have any support due to rural isolation and service lack of recognition or capability of support needs.. Support could be available from group membership and representation, however there are currently no Australian groups for rural community nurses that are both accessible and supportive of their needs. An example of lack of representation is the fact that no recent statistical data is available on how many nurses work in this role.

    In effort to understand the problems with end-of-life care at home for rural district nurses who are a major source of assistance to people having the right to choice in care, I decided to try and involve this distantly diverse would-be community of nurses in joining together with me to promote ourselves and what we do best to help people achieve their rights through advocacy.
    One ethical problem to start with was how to access these nurses equitably as only service contact details are available and some organisations demand individual ethics applications before forwarding the invitation to participate on to nurses,which makes the process unwieldy and is not usually possible in the time available..
    Using social media would be an option except that the people involved (average age over 50) and are generally older and not as likely to be technologically savvy. I have only found two face book groups that may involve some of these people.

    As the service itself is not being researched, and I was only trying to understand how advocacy is used by nurses working relatively autonomously in the community, I believed they had the right to know about the research and participate if they wished.
    As a consequence the qualitative part of my research was limited to smaller services where the letter addressed to the district nurse was actually opened by one of the nurses in question, or by a part time manager/nurse in a slightly larger service who wanted to participate or knew some one personally who would want to. The under-resourced and time poor circumstances of these nurses also impacted on participation..
    To ensure nurses informing the study were treated with due respect and privacy I chose a method that enabled agency by reflecting on their work and how it makes them feel and what they do about it. Firstly asked them to write an experience of advocacy in end-of-life care to send me and then I contacted them and arranged an interview in a place of their choosing where they could maintain as much privacy as they wished. As a member of the group being studied I related well to the informants and an empathetic style of interviewing was chosen to encourage these nurses to feel safe and comfortable expressing the ethical and emotional challenges of their work. Although I had an interview schedule I only used it if they ran out of things to tell me in the way they wished.
    Privacy is so important in rural research because of the fact that everyone knows everyone else locally, and their business if they live and work in the same community and yet for rural nurses working alone, no one really understands what they do, even the people care for do not see the behind scenes thinking and action that is involved in advocacy. These nurse often are well known and scrutinised in their communities and they are asked for and volunteer help and advice outside their working hours- “always on duty”- and yet their work is not understood.. They are also caring for people in very personal issues and they have to guard the privacy of others strictly, which again limits understanding and support.
    These are a few of the ethical issues I can share for now.- I may have others later as I go along.
    Cheers, Fran

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      Elena said:
      May 15, 2015 at 9:07 pm

      Thank you for your comments Fran. You highlight some very important aspects of what appears to be a large community of district nurses who are working in isolated and challenging circumstances. It is interesting to see what is involved in researching with a community whose members are conducting similar work, yet alone, and so geographically distant from each other. If I understand correctly, your aim is to recruit from within this community for participatory research that explores the experiences of nurses in the district nursing role, which could lead to an opportunity for advocacy for this community. Thank you for sharing your experience of ethical challenges you have had to date, such as the difficulties with recruitment and the challenges of maintaining privacy. You are always welcome to come back and tell us more, as you go along. I wish you well with the study.
      Elena.

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    Fern Webb said:
    September 25, 2014 at 10:38 pm

    Dear Elena,
    Thanks for reaching out to me. While I find that community leaders are eager to collaborate, and participants want to take part in our community based studies, institutional challenges often delay true collaboration. For example, investigators or researchers can’t really list community leaders or members as co-investigators unless that organization has a DUNS #. The challenge is that most organizations do not have this number.

    Another challenge wiith CBPR is that if we’re truly collaborating with, and for communities, then we onduct research on problems that they are passionate about and feel would make the most impact; however, this leaves most researchers, like myself, being criticized as having a lack of focus. Thus, on one hand, if researchers focus and then partner with the community, is that really CBPR since we are promoting a hidden agenda. There is a growing body of researchers and scholars who see past the various topics a researcher explores, but rather views the researcher’s portfolio from a perspective of how did they interact with the community, how many evidence-based projects did they work on and what was the overall impact.

    Another ethical issue I have is still referring to individuals, respondents or participants as “human subjects.” Although this seems relatively benign, the underlying psychology of it is painful and hurtful. So, when explaining an informed consent to a potential participant, and having to state that they will be a “subject” in your study, really doesn’t help to promote value. I am still amazed that this language, similar to how we’ve worked to eliminate or reduce the use of other hurtful words in our society, still continues to be comfortably said and written by arguably, the most forward thinking individuals in the world.

    In summary, my experiences with CBPR have been very worthwhile with the community; participants, leaders and organizations have gone above and beyond to identify real solutions to our very difficult problems. My challenges from nstitutions that ask us few, bold and brave researchers to conduct CBPR seems to result from a lack of full support, understanding and appreciation of, or willigness to contribute to CBPR.

    I always like to offer solutions and feel that one solution is: provide resources (whether money, people or protected researcher time) so that researchers can help community organizations acquire all of the acquired bucreatic/institutional information so that leaders can be listed as co-investigator, collaborator or the like on federal (or any other) application. Regarding verbiage, just stop using “human subjects” in any of our international, federal, regional, state or local CBPR verbiage and be bold enough to gently correct others when they do so. Regarding portfolio diversity, I’m eager to hear others’ solutions on that. 🙂

    Thanks for the opportunity to blog.
    All the best,
    Fern Jureidini Webb

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