research partner

Rural Links – Canadian Rural Health Research Society

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I was recently asked to write a few words for the newsletter of the Canadian Rural Health Research Society about the CBPR project I have been involved in as part of my PhD.  My reflection was published in the August 2015 Special Edition of the newsletter, Rural Links and is included below.  This special edition, edited by the talented Silvia Vilches, includes some great reading so please have a look here. 

Canadian Rural Health Research Society: Special Issue August 2015
Canadian Rural Health Research Society: Special Issue August 2015

Ethical implications of Community-Based Participatory Research (CBPR)

Despite recognition of CBPR as an equitable, empowering research approach, recruitment difficulties and ethical challenges were experienced in a partnership project between the La Trobe Rural Health School (Australia) and 3 rural health services in 3 different communities. We focus on our experiences in one small rural township, population 3,000, in a bush-land setting approximately 150 kilometers inland from the south-eastern coastline of Australia.

Despite our best intentions and following CBPR principles carefully, we had difficulties in reconciling the formal ethical standards for recruitment with the expectations of potential participants and the research partner. We decided to formally investigate the challenges of using a CBPR approach for achieving community participation, focusing on one rural community in particular.

The recruitment protocol was problematic in two ways. First, our formally approved research recruitment plan included community information sessions to develop credibility and trust, yet the expectation of the health service partner was to have us ‘in’ the community actively developing relationships to attract participation. Second, the formal recruitment paperwork and process required by our ethics committee conflicted with a more social process of informing and gaining consent better suited to this community.

We were not the only organisation interested in this community. The high level of disadvantage, aging population, and above average rates of obesity and chronic disease meant that several other consultations and research projects were taking place at the same time we were scheduled to commence recruitment. The health service partner became concerned about over-consultation burdening the community and requested that we delay recruitment by 3 months.

As ‘outsiders’ we needed to find a way ‘in’ to the community, sometimes walking a fine line between the formally approved processes and the informal relationship building necessary to gain community trust to build interest in the project. What we did not expect was the high level of distrust community members had towards us as university researchers. In fact, as time went on, we discovered that active negative gate-keeping had taken place which limited the reach of our recruitment drive. This sense of distrust seemed to also be present between community member agencies, with over seventy community groups working in silos, often for similar goals, yet making no attempts to work together. Trying to work with a fragmented community added a layer of complexity to our recruitment attempts.

We were perplexed by our situation. Applying what is seemingly an equitable and empowering approach turned out to be fraught with difficulties. We wondered if other researchers using CBPR had the same issues. To identify the ethical challenges experienced by CBPR researchers at an international level we conducted a scoping review. We also created a blog http://www.cbprethics.wordpress.com as a data collection site and invited researchers to write on the blog about the ethical issues they experienced at key stages of their CBPR process. (This blog is still active at time of publication).

The ethical challenges discussed to date on the research blog focus on informed consent processes and research rigour. Other researchers also see the formal informed consent process as intimidating and a barrier to engagement and discussed the need to explore how to best provide a consent process that is meaningful for communities. Compromised research rigour is a concern and researchers highlight the need to negotiate community cultural expectations with ethics approved processes, and conflicting interests between research partners and community members. Other challenges discussed by researchers can be read at http://www.cbprethics.wordpress.com.

The ethical challenges discussed on the blog to date are similar to those identified in our scoping review literature, suggesting some consistency in the types of issues encountered. Despite the challenges encountered in CBPR, it is a well-intentioned approach that we still see as important for working with rural communities. It led to successful community collaborations across our rural partnership project overall, but we agree with Minkler (2008), who recommends greater attention be paid to ethical considerations.


Elena Wilson, PhD Candidate, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia | E.Wilson@latrobe.edu.au

Amanda Kenny, Professor, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia

Virginia Dickson-Swift (PhD), Senior Researcher, La Trobe Rural Health School, College of Science, Health and Engineering, La Trobe University, Australia

Reference: Minkler, M., & Wallerstein, N. (Eds.). (2008). Community-based participatory research for health: from process to outcomes. San Francisco, CA: Jossey-Bass

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Participation: What counts?

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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

 

4 tips to improve your research recruitment experience

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As a result of the recruitment challenges I experienced in my project I have compiled some suggestions that could be useful to CBPR researchers who are planning for the recruitment phase of their study.

Recruitment Challenges?
Recruitment Challenges?

1.  Clarify expectations

Clarity about expectations of all parties in the partnership well before commencing is important. Clarifying formal research protocols to the research partner (organisation) can help in gaining cooperation to achieve recruitment goals as will the explicit statements from the research partner about its expectations from the research and the researchers.

2.  Identify key community members

Identify and get to know key community members. They are able to take on the role of mediator to physically introduce researchers and the research to people in their networks and to confirm the identity and trustworthiness of the researchers. Personal introductions by a community member who is well liked and respected, can be more valuable to the community for understanding the presence of the researchers and the project, than written information and consent form.

3.  Be specific

Avoid promoting the research project with a nebulous or too broad a topic. People seem to engage with research less reluctantly if there is a more specific topic being discussed, and once engaged the opportunity opens up for exploring topics further afield.

4.  Do CBPR training

The complexities involved in managing a relationship with a partner organization and the community, highlight the importance of training for CBPR researchers prior to commencing contact with members of the community they are to research with. Being armed with knowledge of potential recruitment pitfalls with particular communities, means that the researcher would be better placed to plan for these and therefore design the research and ethics application to include a broader range of recruitment options so that ethics requirements do not impede or prolong recruitment.

 

Good Luck!

 

Image: Jim Frazier: 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

 

4 tips to improve your research recruitment experience

Posted on

As a result of the recruitment challenges I experienced in my project I have compiled some suggestions that could be useful to CBPR researchers who are planning for the recruitment phase of their study.

Recruitment Challenges?
Recruitment Challenges?

1.  Clarify expectations

Clarity about expectations of all parties in the partnership well before commencing is important. Clarifying formal research protocols to the research partner (organisation) can help in gaining cooperation to achieve recruitment goals as will the explicit statements from the research partner about its expectations from the research and the researchers.

2.  Identify key community members

Identify and get to know key community members. They are able to take on the role of mediator to physically introduce researchers and the research to people in their networks and to confirm the identity and trustworthiness of the researchers. Personal introductions by a community member who is well liked and respected, can be more valuable to the community for understanding the presence of the researchers and the project, than written information and consent form.

3.  Be specific

Avoid promoting the research project with a nebulous or too broad a topic. People seem to engage with research less reluctantly if there is a more specific topic being discussed, and once engaged the opportunity opens up for exploring topics further afield.

4.  Do CBPR training

The complexities involved in managing a relationship with a partner organization and the community, highlight the importance of training for CBPR researchers prior to commencing contact with members of the community they are to research with. Being armed with knowledge of potential recruitment pitfalls with particular communities, means that the researcher would be better placed to plan for these and therefore design the research and ethics application to include a broader range of recruitment options so that ethics requirements do not impede or prolong recruitment.

 

Good Luck!

 

Image: Jim Frazier: Flickr.com