Ethics

Participation: What counts?

Posted on Updated on

 

The Grapevine
The Grapevine

Community participation is central to CBPR.  Although definitions of community participation are many and various we understand community participation generally as working together with members of a community to achieve mutually beneficial outcomes in an equitable and ethical manner.

When we undertake CBPR with a community, what does participation actually look like?  Meredith Minkler (2004) cautions researchers about the fluid boundaries of what might constitute community participation and meaningful and ‘valid’ research.

The commitment of researchers to adhere to methods and approaches that lead to valid and reliable findings and that are commensurate with scientific rigour might serve to complicate the idea of community participation further.  In my own experience, I know that participation means that community members have to validate their participation by signing a consent form and coming along to meetings and events which are part of the CBPR process.

The quandary for me lies in the validation of participation.  When I was entering the community with which I was researching, I had casual conversations, sometimes opportunistically, with individuals and community groups.  This was part of the trust building and relationship development that is so crucial to the CBPR approach.  Yet it seems that this phase can all too easily be glossed over as a ‘given’ of participatory research.  What was clear to me, during this period of first steps into the community, was that those who did not want to ‘sign up’ as participants were in fact participating by willingly discussing their concerns with me in an informal manner and in informal spaces. Some individuals were pivotal to my endeavour to recruit ‘consented’ participants, by pointing out potential interested parties, making introductions at community events and helping to promote the research within their own networks.  These were the people who gave me an anchor to latch onto each time I entered the community in those early months.

I have no doubt that some of the relationships and behaviours within, and resulting from, social hierarchies in the community contributed to the decision for some to not participate officially in the research. Draper, Hewitt and Rifkin (2010) remind us that the diverse and complex nature of communities requires community participation to be approached as a social process, enabling participation to take many forms.

So should individuals and groups, such as those mentioned above,  be considered participants?  They welcomed me into the community, voiced their opinions on the research topic, and assisted the research process.  Is what they were doing, participation?  Because they did not sign a consent form, and did not participate in the official CBPR community meetings they are not officially participants and their opinions on the research topic cannot be considered as part of the research data.  Is it ethical to regard their unofficial involvement as a silent ‘given’ of CBPR?   Is it ethical to not validate their participation?   Do they count?

What are your thoughts?  What is your experience?

 

 

Draper, A. K., Hewitt, G., & Rifkin, S. (2010). Chasing the dragon: Developing indicators for the assessment of community participation in health programmes. Social Science & Medicine, 71(6), 1102-1109.

Minkler, M. (2004). Ethical challenges for the “outside” researcher in community-based participatory research. Health Education & Behavior, 31(6), 684-697.

Image: Seng Mah: Flickr.com

 

“ . . . the real and the ideal in CBPR are still a work in progress . . .”

Posted on Updated on

 “…the real and the ideal in CBPR are still a work in progress for the majority of projects.”
“…the real and the ideal in CBPR are still a work in progress for the majority of projects.”

Kraemer Diaz, A. E., Spears Johnson, C. R., & Arcury, T. A. (2015). Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research. Health Education & Behavior. doi: 10.1177/1090198114560016

In this recent publication the authors present findings from their investigation into the perceptions that promote and discourage scientific integrity in CBPR.  In depth interviews were held with professional and community CBPR investigators.

Professional investigators identified external pressures as the main barrier to scientific integrity in CBPR.  External pressures, such as publishing, applying for funding and career advancement are seen to promote traditional research structures which do not include collaboration.  The authors point out that these external pressures discourage scientific integrity in CBPR by undermining community participation, a foundational aspect of CBPR.

While community investigators were found to not be subject to the same pressures, their perceptions demonstrated that community participation is “paramount” for maintaining scientific integrity in CBPR.

The authors conclude that “active” community participation is overall the most important perception in maintaining scientific integrity in CBPR and emphasise that it is not enough to just idealise participation, but that it needs to be “realized through training, shared funding, and community trust and engagement at every step, including oversight of scientific integrity”.

 

Image: roevin Flickr.com

Research Story-telling

Posted on Updated on

Stories about community research challenges
Stories about community research challenges

If you are thinking about writing on this blog about the issues in your CBPR work, have a look at what others are writing on this topic too.

CBPR has many benefits for the community research endeavour, but acknowledging and sharing our stories about what it is really like for researchers actually doing the research with communities, can help beginner researchers to be better prepared before venturing into CBPR work. Your story might be about a smooth sailing project with no issues at all or a project with issues significant enough to keep you awake at night.

Sometimes it helps to read what others have written about this.
Read the contributions on this blog, some of these might sound familiar? but different?
Read the insightful blogging on the subject by Daniel Reeders on The Research Whisperer blog. Daniel gives a “personal account based on things that went awry” in his work.

Then, you might like to add your story to the collection, along-side other CBPR researchers around the world.

Happy reading!

 

Image: Flickr.com

Some content on this page was disabled on August 13, 2018 as a result of a DMCA takedown notice from 75Central Photography. You can learn more about the DMCA here:

https://en.support.wordpress.com/copyright-and-the-dmca/

How to carry out a successful CBPR partnership

Posted on Updated on

How to carry out successful CBPR partnerships
How to carry out successful CBPR partnerships

Promoting Healthy Public Policy through Community-Based Participatory Research: Ten Case Studies

Although not new, this report still has relevance for researchers engaged in community based participatory research and their research partners today. The report looks at 10 case studies of different CBPR partnerships in the US, that are focused on changing policy to improve community health.

Practical recommendations for successful partnerships are made on pages 51 to 54.  Read Report …

 

Image: Filipe Cabrera: Flickr.com

Participation: What counts?

Posted on Updated on

 

The Grapevine
The Grapevine

Community participation is central to CBPR.  Although definitions of community participation are many and various we understand community participation generally as working together with members of a community to achieve mutually beneficial outcomes in an equitable and ethical manner.

When we undertake CBPR with a community, what does participation actually look like?  Meredith Minkler (2004) cautions researchers about the fluid boundaries of what might constitute community participation and meaningful and ‘valid’ research.

The commitment of researchers to adhere to methods and approaches that lead to valid and reliable findings and that are commensurate with scientific rigour might serve to complicate the idea of community participation further.  In my own experience, I know that participation means that community members have to validate their participation by signing a consent form and coming along to meetings and events which are part of the CBPR process.

The quandary for me lies in the validation of participation.  When I was entering the community with which I was researching, I had casual conversations, sometimes opportunistically, with individuals and community groups.  This was part of the trust building and relationship development that is so crucial to the CBPR approach.  Yet it seems that this phase can all too easily be glossed over as a ‘given’ of participatory research.  What was clear to me, during this period of first steps into the community, was that those who did not want to ‘sign up’ as participants were in fact participating by willingly discussing their concerns with me in an informal manner and in informal spaces. Some individuals were pivotal to my endeavour to recruit ‘consented’ participants, by pointing out potential interested parties, making introductions at community events and helping to promote the research within their own networks.  These were the people who gave me an anchor to latch onto each time I entered the community in those early months.

I have no doubt that some of the relationships and behaviours within, and resulting from, social hierarchies in the community contributed to the decision for some to not participate officially in the research. Draper, Hewitt and Rifkin (2010) remind us that the diverse and complex nature of communities requires community participation to be approached as a social process, enabling participation to take many forms.

So should individuals and groups, such as those mentioned above,  be considered participants?  They welcomed me into the community, voiced their opinions on the research topic, and assisted the research process.  Is what they were doing, participation?  Because they did not sign a consent form, and did not participate in the official CBPR community meetings they are not officially participants and their opinions on the research topic cannot be considered as part of the research data.  Is it ethical to regard their unofficial involvement as a silent ‘given’ of CBPR?   Is it ethical to not validate their participation?   Do they count?

What are your thoughts?  What is your experience?

 

 

Draper, A. K., Hewitt, G., & Rifkin, S. (2010). Chasing the dragon: Developing indicators for the assessment of community participation in health programmes. Social Science & Medicine, 71(6), 1102-1109.

Minkler, M. (2004). Ethical challenges for the “outside” researcher in community-based participatory research. Health Education & Behavior, 31(6), 684-697.

Image: Seng Mah: Flickr.com

 

“ . . . the real and the ideal in CBPR are still a work in progress . . .”

Posted on Updated on

 “…the real and the ideal in CBPR are still a work in progress for the majority of projects.”
“…the real and the ideal in CBPR are still a work in progress for the majority of projects.”

Kraemer Diaz, A. E., Spears Johnson, C. R., & Arcury, T. A. (2015). Perceptions That Influence the Maintenance of Scientific Integrity in Community-Based Participatory Research. Health Education & Behavior. doi: 10.1177/1090198114560016

In this recent publication the authors present findings from their investigation into the perceptions that promote and discourage scientific integrity in CBPR.  In depth interviews were held with professional and community CBPR investigators.

Professional investigators identified external pressures as the main barrier to scientific integrity in CBPR.  External pressures, such as publishing, applying for funding and career advancement are seen to promote traditional research structures which do not include collaboration.  The authors point out that these external pressures discourage scientific integrity in CBPR by undermining community participation, a foundational aspect of CBPR.

While community investigators were found to not be subject to the same pressures, their perceptions demonstrated that community participation is “paramount” for maintaining scientific integrity in CBPR.

The authors conclude that “active” community participation is overall the most important perception in maintaining scientific integrity in CBPR and emphasise that it is not enough to just idealise participation, but that it needs to be “realized through training, shared funding, and community trust and engagement at every step, including oversight of scientific integrity”.

 

Image: roevin Flickr.com

Research Story-telling

Posted on Updated on

Stories about community research challenges
Stories about community research challenges

If you are thinking about writing on this blog about the issues in your CBPR work, have a look at what others are writing on this topic too.

CBPR has many benefits for the community research endeavour, but acknowledging and sharing our stories about what it is really like for researchers actually doing the research with communities, can help beginner researchers to be better prepared before venturing into CBPR work. Your story might be about a smooth sailing project with no issues at all or a project with issues significant enough to keep you awake at night.

Sometimes it helps to read what others have written about this.
Read the contributions on this blog, some of these might sound familiar? but different?
Read the insightful blogging on the subject by Daniel Reeders on The Research Whisperer blog. Daniel gives a “personal account based on things that went awry” in his work.

Then, you might like to add your story to the collection, along-side other CBPR researchers around the world.

Happy reading!

 

Image: Flickr.com

Some content on this page was disabled on August 13, 2018 as a result of a DMCA takedown notice from 75Central Photography. You can learn more about the DMCA here:

https://en.support.wordpress.com/copyright-and-the-dmca/

How to carry out a successful CBPR partnership

Posted on Updated on

How to carry out successful CBPR partnerships
How to carry out successful CBPR partnerships

Promoting Healthy Public Policy through Community-Based Participatory Research: Ten Case Studies

Although not new, this report still has relevance for researchers engaged in community based participatory research and their research partners today. The report looks at 10 case studies of different CBPR partnerships in the US, that are focused on changing policy to improve community health.

Practical recommendations for successful partnerships are made on pages 51 to 54.  Read Report …

 

Image: Filipe Cabrera: Flickr.com

CBPR in counselling and psychotherapy research

Posted on Updated on

 

Here is a comment contributed via ResearchGate.  Identifying details have been removed.

My colleague and I have recently written an article (under review) about CBPR in counselling and psychotherapy research – the main areas of ethical challenges we identified in this particular field relate to data management and confidentiality, potential distress to co-researchers (including academic co-researchers) and participants – especially if they are current counselling clients. The nature of ethical issues in CBPR will be different for every project depending on the topic and the arrangement – for example, are participants also co-researchers or are co-researchers and participants separate? Are co-researchers part of the same community as participants?

 

Negotiating divergent interests

Posted on Updated on

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.

Ethics Review Process

Posted on Updated on

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 equiped   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?