Community Voice in Strategies for Recruiting and Retaining Navajo Community Members in Primary Care Research

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Community Voice in Strategies for Recruiting and
Retaining Navajo Community Members
in Primary Care Research
Christina Getrich, PhD Andrew Sussman, PhD, MCRP

Navajo Nation HRRB Conference 11/16/11
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Problem

• The underrepresentation of diverse populations in
  research an important barrier to
• Understanding differences between groups
• Developing culturally appropriate health services
  and interventions

• Conducting research through primary care settings
  based in the community offers the potential to
  address these problems

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Our Study

• We did a study on the Navajo Nation to identify
  strategies for involving community members in
  projects led through primary care

• Researchers need more understanding about
  developing culturally sensitive procedures for
  recruitment and retention that address the
  concerns of Navajo persons

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Who We Are RIOS Net

• NMs primary care, practice-based research
  network (PBRN)
• A group of 200 clinicians serving low-income,
  medically underserved, and culturally diverse
  communities
• Focused on health disparities

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RIOS Net Research Areas

• Hepatitis C
• Family Violence
• Depression
• Cancer prevention
• Barriers to health care access

• Diabetes/Obesity
• Tobacco Use
• Alcohol Use
• Traditional, Complementary, and Alternative
  Medicine

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Methods Focus Groups

• We conducted 3 focus group discussions with
  members of 2 different Navajo communities
• Focused on prior experience with research,
  influences on initial participation, influences
  on continued participation, role of
  doctors/staff, recommendations for researchers
• Focus groups conducted between November-December
  2010
• All focus groups had bilingual (Navajo-English)
  co-facilitators

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FG Participant Demographics

• 27 focus group participants overall
• Gender
• Men 9 (33)
• Women 18 (67)
• Age
• 30s 2 (7)
• 40s 3 (11)
• 50s 9 (33)
• 60s 6 (22)
• 70s 7 (26)

• Preferred language
• Only English 1 (4)
• Only Navajo 6 (22)
• Both 20 (74)
• Research experience
• Yes 5 (19)
• No 19 (70)
• Dont know 3 (11)

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Results

• We found that community members are generally
  receptive to involvement in research conducted
  through primary care settings
• This participation is contingent, however, on
  meeting a set of conditions
• We grouped these conditions into categories
• I. Building a foundation
  
• of trust
• II. Views of research
• participation

• III. Views of physician/
• staff roles in projects
• IV. Tailored recruitment
• strategies
• V. Tailored retention
• strategies

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I. Building a Foundation of Trust

• Participants advocated that researchers build
  trust with community partners before study
  implementation
• Building relationships
• If someone were to come out into the community
  and we didnt know them, but they wanted to ask
  us some questions, we probably wouldnt be able
  to be open to them, becausewed be unsure of
  them.
• Being upfront about the research
• I would suggest that to make it more clear for
  everyone, to really understand, to really know
  what this research is about.

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II. Views of Research Participation

• Participants reflected on their
  associations with research
• Negative views
• Concerns about being like a guinea pig or lab
  rat
• Positive views
• Its not bad thing to participate. Then you talk
  to your people about itHey, I went over there
  and would talk about this and this. It might
  help.
• Motivation
• We really do want to learn about our health,
  especially if we have problems. We want to
  understand ourselves whats the situation we are
  in.

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III. Views of Physician/
Staff Roles in Projects

• Less research on issues related to
  conducting research in primary care
• Participants expressed mixed feelings about
  physician involvement
• It depends on your doctor. Some you feel good
  talking to themtheyre down to earth with you.
  Then theres others thatkind of put you down,
  you know just the way they talk. They try to be
  nice, but you can tell.
• Concern about it causing fear

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IV. Tailored Recruitment Strategies

• Participants recommended appropriate ways to
  reach out to people in the first place
• Work through Chapter Houses
• Have a group like this group and then talk about
  it so people can find out more information on
  it and also what its for.
• Radio
• Word of mouth
• Importance of clear communication
• Researchers need to be specific, not with the
  high expensive words, but come down to our level.
  Maybe have a good translator since a lot of
  us Navajos would really understand someone in the
  Navajo language to talk about basically what
  the problem is.

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V. Tailored Retention Strategies

• Participants also reflected on what would keep
  them engaged in research studies
• Convenience
• Keep the research close nearby, like the Chapter
  House. If weve got to travel far distance then I
  dont have the time to do all that. Like I said,
  I take care of livestock. I take care of my
  nieces and nephews when they come back from
  school.
• Ongoing communication feedback
• Getting people involved
• To keep people coming, I would say involve the
  group. Give out what research can be gathered
  out there in the community so they can bring that
  information and talk about it whatever topic is
  going to be on class health on that day again.
  That way theyd come back.

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Closing the Loop

• Returning results
• We put all this time in and we dont get any
  feedback you dont tell us about all the
  information you gathered, so what was the
  purpose? Id like to get some feedback, some
  results, what you learned from the project.
• Helping solve problems
• Other researchers come and go. Poke their head
  in, then its over and they never come back to
  give us the results. They never come back to
  help people solve the problem. Did it work? Is
  there a better understanding?
• Bringing attention to issues more widely
  (i.e., to the university, the government)

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CYCLE OF RESEARCH
Before the Study
During Recruitment
Throughout Study Conduct
Following Study Completion
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Conclusions

• Researchers will need to incorporate culturally
  appropriate components from each of
  these categories in the development,
  implementation, and dissemination phases of
  research projects
• Community-based participatory research principles
  offer a general approach to create and maintain
  these conditions

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Benefits of Research

• These findings will help guide researchers in
  culturally appropriate recruitment and retention
  strategies for involving Navajo participants in
  primary care-based research studies

• These findings will help RIOS Net develop future
  projects that aimed at doing something about
  health concerns people in the community have

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• THANK YOU!!!
• Christina Getrich
• chgetrich_at_salud.unm.edu
• 505-272-3489