Hello,
I’m Elena and this is the research site for my PhD research study ‘ Ethical Implications of Community Based Participatory Research ‘.
If you are a researcher involved in community based participatory research (CBPR), either currently or in the past, and if you would like to post on this blog, please first read the Participant Information Statement.
Your consent will be implied when you make a posting on this site – anonymous postings are welcome.
The aim of the study is to to capture CBPR researcher experience related to ethics at key stages in the research process.
If you 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?
This study will provide some understanding of the ethical nuances of conducting CBPR and may inform community based participatory research education and ethical review guidelines.
Once the study is complete, this blog will remain open for discussion and resource sharing among CBPR researchers internationally.
PLEASE SCROLL DOWN TO BOTTOM OF THE PAGE TO POST YOUR COMMENTS
Community Based Participatory Research 
May 31, 2015 at 3:04 pm
How long should community poarticipants stay on community advisory committees?
Should health service employees or cnsultants be allowed to be community advisers for other depts?
Do doctors have a right to be heard recent evidence of consumer participation in discharge planning was implemented by nurses and consumers with no input from doctors. Comment was made that doctors already have power but in this situation they were disempowered. Is this fair, is every voice valid? Who are the stakeholders? Do we need to do stakeholdre audits?
LikeLiked by 1 person
May 15, 2015 at 9:30 pm
Here is another comment I am bringing forward from a back page so you don’t miss it.
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
LikeLiked by 1 person
May 15, 2015 at 9:32 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.
LikeLike
May 15, 2015 at 9:27 pm
Here is another comment I am bringing forward from a back page for you to read.
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.
LikeLiked by 1 person
May 15, 2015 at 9:28 pm
Elena responded:
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.
LikeLike
May 15, 2015 at 9:26 pm
Elena responded:
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.
LikeLike
September 26, 2014 at 9:43 am
SOME THOUGHTS FROM FERN WEBB – IN CASE YOU MISSED IT ON THE POSTS PAGE
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
LikeLike
September 26, 2014 at 10:02 am
Fern, thanks so much for your comments. You have highlighted some really interesting ethical issues relating to institutional challenges, which as you say, do bring into question what can be considered true collaboration…. what does true collaboration actually look like on the ground? Thank you for your candid comments and for taking the time to add to this important discussion….. I invite others to respond to your post and share their own experiences here.
LikeLike
September 6, 2014 at 5:12 am
Hi Elena! Thanks for your comments on my blog on http://thepump.jsi.com/spreading-the-word-about-community-based-participatory-research-for-asthma-reduction/ You have developed an interesting process for gathering information on CBPR. It’s great! In answer to your question about engaging the community in our work in Lawrence, MA, I’ll tell you a bit of the history of our initial project funded by the EPA Office of Research and Development. We were working with a group of residents worried about the health effects of emissions from 5 incinerators in the region actively seeking help from local, state, and federal regulatory agencies. The US Environmental Protection Agency (EPA) hired us to conduct a study of environmental releases in the region and documented health problems. We found high rates of pediatric asthma in the city of Lawrence – 4 times the state rate. Lawrence is the poorest city in Massachusetts with a population that is 72% Latino. We wanted to make sure that the Latino population attended the meeting organized to present the results so we advertised on Spanish radio and TV, placed notices in the Spanish press, and posted flyers across the city. You can guess the result – no one form the Latino community came to the meeting.!We quickly learned that we needed to develop a different way to engage the population. We were outsiders who did not really know the community so we hired and trained people from the community, who are of the culture, and speak the language to effectively engage their friends, neighbors, and family members. Not only did this method extend our reach into the community, but their involvement GREATLY informed our work and made it far more responsive to the issues and needs of the population. The Promotoras we engaged essentially “translated” our messages to the community and more importantly “translated” the community’s messages to us. We’ve developed a wonderful partnership that has allowed us to work with the community on a number of different environmental health issues over the last 15 years – some identified by the community and some identified by us. Gretchen
LikeLike
September 6, 2014 at 11:55 pm
Thanks for writing about your CBPR project Gretchen.
Those are concerning stats about the asthma rates in children, so it is great that your research was able to address this with the community. I can relate to the difficulty engaging the community when coming to it as an outsider. It seems that you were able to develop a partnership that has worked very well for you and for the community to be able to deliver more culturally and linguistically appropriate interventions. Did you come across any ethical challenges during the project?
LikeLike
September 9, 2014 at 12:26 am
Hi Elena,
We actually did not encounter any ethical challenges. Our participants trusted us because they trusted our community partners and they were not concerned about discussing the issues in small groups. Most of the issues they already discuss among themselves, even when we did a project on very personal reproductive health practices or the use of mercury in religious and/or superstitious practices. They welcomed the information our Promotoras provided them and were eager to learn. Plus, everything we documented without personal identification. The Hispanic population we worked with are primarily immigrants from the Dominican Republic and Puerto Rico and in Lawrence, MA they have an ethic of helping and supporting each other.
LikeLike
September 11, 2014 at 11:49 pm
Thanks for explaining this Gretchen. I am glad you bring up the trust aspect of the relationships; I know this has been highlighted in much of the literature to be integral to the success of CBPR. I am not very familiar with the requirements in the US … I am wondering whether in your particular arrangement with the EPA you were required to have ethics review and approval prior to conducting the research in the community.
LikeLike
August 24, 2014 at 2:37 pm
My work doesn’t entirely fit with the principles of CBPR as the research has not been instigated by the community, nor are they designing the study. However, I am trying to get the general public to contribute meaningfully to the conversation which will shape the framework I plan to develop from the results of the research.
Similarly to many of the comments made above by Nerida, I find that when working in and with communities, paperwork is a barrier to engagement. People are happy to talk, but ask them to sign a piece of paper and as Nerida explained so well, a wariness intrudes where before there was none.
My other observation, made recently whilst collecting data via a 3 question postcard survey undertaken in a public space, is that despite adopting this data collection method in an attempt to reach a broader base of participants, you still don’t get participation from the ‘hard to engage groups’. This may not directly relate to the ethics of CBPR, but for me it is an ethical issue. My data collection method was designed to increase the opportunity for people who were less likely to participate in other forms of research, to engage in a non threatening, anonymous data collection activity. Those who chose to participate were usually educated and predominantly middle aged women. Even when heterogeneous couples stopped, invariable the male would prefer to abdicate responsibility for providing an opinion to his female companion. Younger people, those who appeared more marginalised and even those who appeared to be unskilled/long term unemployed would avoid participation, usually stating that it was not something they had an opinion about, as it wasn’t a topic they thought much about (health), until there was a problem.
My ethical conundrum relates to the desire to be inclusive and the reluctance of those who we perceive to be marginalised in some manner, to participate in research. The dynamic demonstrated numerous times by many of the heterogeneous couples was that when a potential participant is reluctant to engage, that they are happy for someone who they believe understands them well, to advocate and advance an opinion on their behalf. Rather than making sections of the community uncomfortable about saying that they do not want to participate in a research activity, isn’t it far more ethical to facilitate input from an appropriate advocate on their behalf?
Communities are more than a collection of individuals. When working with communities isn’t it more appropriate to identify whatever functional systems/established networks exist in that community and use these for our research purposes? Even in dysfunctional communities such systems/networks exist. Those who are already engaged in the systems which exist have demonstrated their willingness to act on behalf of the community, and are likely to be the same people who become involved in research opportunities. .
LikeLiked by 1 person
August 25, 2014 at 10:27 am
I really enjoyed reading your post, thanks for sharing. ‘Network’ recruitment is an interesting method, and like you have described very well, seems to come with both costs and benefits. I agree with you in that we need to identify established networks within communities (all types) to assist with researcher entry and participant recruitment. And I suppose one of the ethical benefits of CBPR is that ‘participants’ can act as peer researchers, who go out and seek data from their networks using the most culturally appropriate and accessible means.
Your post made me reflect on my work in the alcohol and other drug sector, and how, if I were to use CBPR, I would access this group. Within this community there are different layers and networks, e.g. people using methamphetamine had different social networks than people using heroin, older people had different networks to younger people, and people with criminal histories were quite different to high-functioning business/employed people. To understand these networks and layers we need to find the right people to reveal them, and I suppose in this circumstance, as an AOD health professional I would have been a useful person to uncover the networks, but not as a ‘representative’ of their opinion.
I also like how you have made the point that we ‘perceive them to be marginalised in some manner’. Within the drug user community, some people e.g. dealers and the like, would not identify themselves as ‘marginalised’ they see themselves as king pins, people with power over other drug users.
i think the point that I am making is that, I enjoyed and agree with the previous post, and to build on this and i think we need to consider the complexity of social networks within communities and look at all layers from all angles, to understand who is connected, and who is disconnected from the ‘norm’.
LikeLike
July 6, 2014 at 2:23 am
Hi,
One thing that has stuck with me in the many years since I was involved in one CBPR project was that trying to address community concerns about ethics led to a less rigorous study design and, thus, I think, findings that were not as strong and could not be used to influence policy and practice as much as I would have liked.
The issue was that the community was resistant to having a control group. I actually supported them at the time and we ended up with a single arm intervention design with no comparison group. The study did produce some meaningful papers and had a strong impact on local housing authority policy. But afterward I thought we would have had more impact regionally, or even perhaps nationally, if the study design were stronger. I also realized after the fact that there are ways to have control groups that communities accept — a delayed intervention, for example.
Another aspect of this that is interesting is that virtually no IRB would have an issue with a control group for the type of study that we were conducting. Yet many communities inherently view a control group as unethical, suggesting that professional and community-level views of research ethics differ quite a bit.
LikeLike
July 6, 2014 at 9:27 am
Doug, thank you for sharing your thoughts on the topic. You bring up some issues that seem to become more complex as one thinks about them. I wonder if it is an inherent characteristic of CBPR, that researchers find the more meaningful data through the informal interactions with the community, which may not necessarily be part of the IRB approved study design. It would be interesting to know if others have had similar experiences to yours. Thank you again for your candid comments.
LikeLike
June 6, 2014 at 8:22 pm
My PhD focused on participatory rural project. I encountered the question of ethics right from the beginning till the end of the research. Having secured ethics clearance from my university, I knew there were many other hurdles to scale through in terms of working with the community. As the project involved rural women and men, there were always ethical issues about men (husbands) not allowing their wives to talk to me without their presence. Not allowing their wives to attend meetings without them. As the project was participatory, I had to conduct many briefings and meetings with the community before moving to the next stage. In some of the meetings, I needed to make reference to some issues I obtained from the community but had to restrain because the information might be an incendiary element or stoke conflict in the community. However, I also though that not referring to the information in its true nature is unethical in terms of the project in the community and the information needs of other stakeholders of the project.
I don’t know how one explains the question of ethics when in my case I had to find a way to ‘unparticipate’ some of the community members because they were going to be spoilers to the grand idea of the project.
I hope my comment speaks to what you want to know otherwise I also would like to invite comments to some of the issues I have discussed here.
LikeLiked by 1 person
June 7, 2014 at 12:23 am
Sam, thank you for your thoughtful comments. I too have had a similar experience that involved losing a participant because continued participation would have jeopardized the project’s progress, and I know for me this brought up questions about inclusion. I am interested in your comments about difficulties in regard to female participants. Was this a cultural stance within that community? Do you think you would do anything differently if you were to do a similar study in the future? Thank you so much for your insightful comments and for your willingness to share your experience. I invite other readers to comment.
LikeLiked by 1 person
June 2, 2014 at 11:14 pm
Want to write something, but not sure exactly what? Go to the Posts tab for tips on the sorts of things you could write about.
LikeLike
May 18, 2014 at 2:57 pm
Here is another post I am moving to this page so you don’t miss it. What do you think about the research ethics review process?
Ethics Review Process
Aside Posted on March 8, 2014 Updated on March 8, 2014
I would like to share a comment I have received on this topic from a CBPR researcher:-
I think part of the problem is that ethics committees are generally not very well equipped with dealing with these kinds of projects when they review them and try to review them within their normal framework (which traditionally has its roots in the biomedical/clinical), which is less than ideal. Work needs to be done to agree what might be an ethical framework for this and other kinds of “engaged” research and then this needs to be transmitted to ethics committees. This kind of work is iterative and the ethical approval process needs to be responsive to that.
Would you agree? Was the ethical review of your CBPR research satisfactory?
LikeLike
May 18, 2014 at 2:53 pm
I am moving this post to this page so it does not get missed. Please leave a reply if you have a comment !
Negotiating divergent interests
Posted on March 13, 2014
Here is another comment from a researcher. Identifying information has been removed:-
This is very topical for us currently. We are working with a University to teach and inspire students in Community-based and participatory asset mapping, and participatory action research whilst we complete our ethnographies .
Our emphasis on the participatory is welcomed, we feel, but the students have been set a task that involves door-to-door mapping of a survey type. We have stressed the importance of permissions, non-assumed consent, ongoing consent and so forth, and especially working together with villagers to set the strengths, needs and agendas to follow. This may not happen and if it does it may put the students and university in some degree of opposition to state and government drives for the region – something that culturally is not taken lightly by the students.
Our ethical and moral issues concern the integrity of what we are doing together with the people of the area and the interests of the students and university. These may be at odds and we have to negotiate these.
LikeLike
May 7, 2014 at 12:21 am
Hey Elena I find it a little difficult to get my head round specifically what you are looking at here. Can you give one or more definitions of CBPR and perhaps some examples.
I am not even sure if what I do is CBPR. For example, here I am back in Scotland and I have heard that some of the communities I used to work with in the O4O Older People for Older People project on community co-production have really taken up the challenge and are going great guns with developing services for their communities. When I did the project, i didnt think of it as CBPR. Really we were asking the communities to participate in setting up social enterprises, but we as researchers, were doing the research around it. Does that constitute CBPR?
if so, then perhaps an ethical issue was in expecting/asking community members to participate. Only some participated, so was it fair on them for us to get them involved in additional responsibility when others in their community, had the chance to opt out? at the time, this project was seen as politically challenging as it aligned with public service withdrawal. We contended we wanted to see if policy co-production ideas, worked? but was that fair to communities, was it ethical? I remember that at least one ‘community’ decided not to engage and it was challenging as it caused disruption in the community between those who wnated to get involved in coproduction and those that didnt. In a sense and perhaps only for a short time, we as researchers caused social disruption in the community. Well – is that ok? is that ethical?
OK I have a few issues and questions in here, what do you think?
LikeLiked by 1 person
May 9, 2014 at 11:26 am
Thank you Jane, for your thoughtful comments. I don’t think there is a quick and easy way to define CBPR, but I can offer my understanding of its central tenets. Overall, it is understood that communities participate at every stage of the research process from identifying the research question, designing the data collection tools, right through to implementation and evaluation. What is different about CBPR is that the knowledge transfer is ‘two-way’ as is the location of power. This means that, unlike other research approaches that distinguish between the researcher and the researched, CBPR involves the community as co-researchers. Another feature that underpins the CBPR approach is that it needs to be ethical, a response to a history of community exploitation in research.
It is great that some of the communities you worked with have successfully carried on with developing services for their communities, post research. This is also integral to CBPR, that is, building sustainability into the research from the beginning (consideration of the potential post research impact). You raise some really interesting questions about your interactions with the communities, and I believe that this is a fundamental part of being a CBPR researcher; it requires a high level of researcher reflexivity to maintain a balance of power and to be confident that processes are ethically sound.
I am interested to know what others might think, or if there experience has been different?
For visitors to this blog who would like to know more, some key authors on this topic are Sarah Banks (bit.ly/1jmEgJI), Meredith Minkler (bit.ly/QjXPGu) and Carol Horowitz (http://www.ncbi.nlm.nih.gov/pubmed/19451365).
LikeLiked by 1 person
May 13, 2014 at 9:55 am
Interesting description Elena. I think the point you made about “What is different about CBPR is that the knowledge transfer is ‘two-way’ as is the location of power.” is highly important, but can be difficult to achieve. I think people might see ‘researchers’ as traditional ‘power-holders’ and re-distributing that power can be difficult due to traditional/historical researcher roles, and perspectives of researchers and universities from society in general. I would be interested to hear from other researchers on this blog who have been successful in achieving this power re-distribution and if they had any ethical challenges in doing so, i.e. were participants able to safely and competently take on this ‘power’ responsibility?
LikeLike
April 23, 2014 at 11:40 pm
Just came across this article. Some good points about informed consent and public spaces. Relevant for CBPR.
Isabella Paoletti (October 2013) Ethics and the Social Dimension of Research Activities, Human Studies.
LikeLike
April 24, 2014 at 9:55 am
Thanks for referring to the article. Will be of interest to visitors to this blog. Paoletti makes a good point, that is,
“…reflecting on the research dimension of research activity and on the impact on the social setting being studied can provide a useful standpoint from which to make ethical decisions”.
Have you experienced any ethically significant moments in CBPR?
LikeLike
April 4, 2014 at 9:13 am
Thanks for your comments Nerida and Kaye. Interested to know what others have experienced on the ground.
LikeLike
March 28, 2014 at 12:45 pm
Community Research Issue: Getting voluntary and active informed consent without drowning people in paperwork or coming across as intimidating
I am taking the opportunity to be honest here and I hope it doesn’t come back to bite me, but this is how I feel…
When I approach people to participate in my research I try to gauge their understanding and provide a full description of the research in language they will understand – the key being ‘language they understand’, this is different for everyone and is determined within the person-to-person interaction. Yet, all ethics committees require researchers to develop a ‘lay’ statement of research that is meant to be appropriate for all participants, this might be fine for some research samples, but in community research the population is incredibly diverse and one-size does not fit-all for a research information statement – however, an individualized written statement for all different community sub-groups would be unreasonable. So this means determining active, voluntary informed consent is a visual, social and interpersonal process, which involves active listening and communication skills. I need to explain the research, but encourage and listen to questions, check body language and respond appropriately to verbal and non-verbal cues. This can’t be done through a written information statement and simple fact-check process, which is often all that is required by ethics committees. This is a complex social process.
The amount of content that goes into a written statement is unreasonable, and my guess is that not many people will read this, this makes me feel uncomfortable. I think that in community research, consent is often based on trust and rapport, and possibly perceptions of power and status of the researcher, rather than on ‘active informed voluntary consent’. When you are conducting research in the community it is about who you know, where you are from, and whether you can be trusted, rather than the written information you have provided, this is almost secondary, and in some cases I think meaningless to the community members.
What I propose is that we find revise current accepted ethical procedures for seeking and gaining active informed voluntary consent in community research, because the current procedures are meaningless and out of touch with what happens on the ground. They can be laboursome for researchers, and in some cases illogically hinder research possibilities.
The next issue is the carry-over effect of being a paper pusher
When I do try to ‘push the paperwork’ I feel like a lawyer, offering a written contact that is binding, and is met with suspicion. When I hand over this pile of paperwork I suddenly feel like I’m in a suit or lab coat, an expert from a nearby ivy tower, called in to inspect a strange breed or wild creature. The formality of it brings the ‘us and them’ to the forefront of our budding relationship, which takes some time to overcome. People then forget that I am a community member just like them with good intentions, I become different. In my experience, people can then either become wary or complacent.
I suppose the perception may be that if ethics committees cannot trust researchers to abide by ethical conditions, how can community members trust us either? This isn’t to say that I do not support the work of ethics committees, and of the NHMRC Statement, because I do wholeheartedly. But I’m not convinced getting ‘ethics approval’ means that researchers will act ‘ethically’ any more than they would without ethics approval – and I think that an unethical researcher with ethics approval will continue to conduct themselves unethically regardless of an approval memo.
I’m not sure if I have any answers here but I would like to discuss these issues, hopefully others might have had similar experiences and we can come up with solutions together, thanks for reading
LikeLike
April 2, 2014 at 9:34 am
Thank you for your candid post Nerida. For me your thoughts raise a number of questions. Is the degree to which participants’ understand the consent process exclusive to CBPR or is this an issue for all research involving ‘lay’ participants? CBPR is a complex social process, so how does that make things different related to consent? Is it different? How do these complexities and the social impacts of the process change the level of the ‘understanding’ required by participants, and how does this differ to other research? You raise important issues regarding professional boundaries and identity as a researcher. Where are the professional boundaries for the researcher in CBPR and what happens when they are crossed? How does this impact on the ethical process in CBPR? Is the concern regarding being an impersonal ‘paper pusher’ and developing ‘trust’ an ethical issue in CBPR or an identify issue as a researcher? It could be either, or both. These and many other questions need to be unpacked.
LikeLike