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Published in: BMC Medical Research Methodology 1/2016

Open Access 01-12-2016 | Research article

“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research

Authors: Stella Safo, Chinazo Cunningham, Alice Beckman, Lorlette Haughton, Joanna L. Starrels

Published in: BMC Medical Research Methodology | Issue 1/2016

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Abstract

Background

Community advisory boards (CAB) are proposed as one mechanism to carry out successful community based participatory research (CBPR), but the presence of CABs may be insufficient to optimize academic-community partnerships.

Methods

We conducted semi-structured interviews with minority members of a CAB partnered with a HIV/AIDS research center and identified three themes.

Results

First, lack of trust in researchers included two subthemes: researchers’ lacked respect for community-based organizations’ (CBO’s) interests and paid inadequate attention to building trust. Second, power imbalance included three subthemes: CAB members felt like inferior “token” members, felt that a lack of communication led to disempowerment, and held preconceived beliefs of researchers that led to perceived power imbalance. Third, CAB members suggested best practices, including using collaborations to build trust, actively allocating power, and sharing tangible research benefits with CBOs.

Conclusions

Our findings indicate that CABs must be founded on trust and instilled with power to meet the tenets of CBPR.
Literature
1.
go back to reference Lounsbury D, Rapkin B, Remien R. A practical framework for navigating ethical challenges in collaborative community research contact author. Global J Commun Psychol Pract. 2011;1(3):13–22. Lounsbury D, Rapkin B, Remien R. A practical framework for navigating ethical challenges in collaborative community research contact author. Global J Commun Psychol Pract. 2011;1(3):13–22.
3.
go back to reference Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA. 2007;297(4):407–10.CrossRefPubMed Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA. 2007;297(4):407–10.CrossRefPubMed
4.
go back to reference Horowitz CR, Robinson M, Seifer S. Community-based participatory research from the margin to the mainstream are researchers prepared? Circulation. 2009;119(19):2633–42.CrossRefPubMedPubMedCentral Horowitz CR, Robinson M, Seifer S. Community-based participatory research from the margin to the mainstream are researchers prepared? Circulation. 2009;119(19):2633–42.CrossRefPubMedPubMedCentral
5.
go back to reference Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC. Peer reviewed: community advisory boards in community-based participatory research: a synthesis of best processes. Prev Chronic Dis. 2011;8(3):A(70). Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC. Peer reviewed: community advisory boards in community-based participatory research: a synthesis of best processes. Prev Chronic Dis. 2011;8(3):A(70).
6.
go back to reference Chen PG, Diaz N, Lucas G, Rosenthal MS. Dissemination of results in community-based participatory research. Am J Prev Med. 2010;39(4):372–8.CrossRefPubMed Chen PG, Diaz N, Lucas G, Rosenthal MS. Dissemination of results in community-based participatory research. Am J Prev Med. 2010;39(4):372–8.CrossRefPubMed
7.
go back to reference Delaney EM, Walton HM, Trezza GR, Henley KM, Vielhauer MJ, Morgan E, Meyer P, Keane TM. Community Advisory Boards in HIV Research: current scientific status and future directions. JAIDS Journal of Acquired Immune Deficiency Syndromes. 2012;59(4):e78–81.CrossRefPubMed Delaney EM, Walton HM, Trezza GR, Henley KM, Vielhauer MJ, Morgan E, Meyer P, Keane TM. Community Advisory Boards in HIV Research: current scientific status and future directions. JAIDS Journal of Acquired Immune Deficiency Syndromes. 2012;59(4):e78–81.CrossRefPubMed
8.
go back to reference Morin SF, Maiorana A, Koester KA, Sheon NM, Richards TA. Community consultation in HIV prevention research: a study of community advisory boards at 6 research sites. JAIDS-HAGERSTOWN. 2003;33(4):513–20. Morin SF, Maiorana A, Koester KA, Sheon NM, Richards TA. Community consultation in HIV prevention research: a study of community advisory boards at 6 research sites. JAIDS-HAGERSTOWN. 2003;33(4):513–20.
9.
go back to reference Cox LE, Rouff JR, Svendsen KH, Markowitz M, Abrams DI. Community advisory boards: their role in AIDS clinical trials. Health Soc Work. 1998;23(4):290–7.CrossRefPubMed Cox LE, Rouff JR, Svendsen KH, Markowitz M, Abrams DI. Community advisory boards: their role in AIDS clinical trials. Health Soc Work. 1998;23(4):290–7.CrossRefPubMed
10.
go back to reference Kagan JM, Rosas SR, Siskind RL, Campbell RD, Gondwe D, Munroe D, Trochim WM, Schouten JT. Community-researcher partnerships at NIAID HIV/AIDS clinical trials sites: insights for evaluation & enhancement. Progress in community health partnerships: research, education, and action. 2012;6(3):311.CrossRef Kagan JM, Rosas SR, Siskind RL, Campbell RD, Gondwe D, Munroe D, Trochim WM, Schouten JT. Community-researcher partnerships at NIAID HIV/AIDS clinical trials sites: insights for evaluation & enhancement. Progress in community health partnerships: research, education, and action. 2012;6(3):311.CrossRef
11.
go back to reference Pinto RM, Spector AY, Valera PA. Exploring group dynamics for integrating scientific and experiential knowledge in Community Advisory Boards for HIV research. AIDS Care. 2011;23(8):1006–13.CrossRefPubMedPubMedCentral Pinto RM, Spector AY, Valera PA. Exploring group dynamics for integrating scientific and experiential knowledge in Community Advisory Boards for HIV research. AIDS Care. 2011;23(8):1006–13.CrossRefPubMedPubMedCentral
12.
go back to reference James S, Arniella G, Bickell NA, Walker W, Robinson V, Taylor B, Horowitz CR. Community ACTION boards: an innovative model for effective community–academic research partnerships. Progress in community health partnerships: research, education, and action. 2011;5(4):399. James S, Arniella G, Bickell NA, Walker W, Robinson V, Taylor B, Horowitz CR. Community ACTION boards: an innovative model for effective community–academic research partnerships. Progress in community health partnerships: research, education, and action. 2011;5(4):399.
13.
go back to reference McQuiston C, Parrado EA, Martínez AP, Uribe L. Community-based participatory research with Latino community members: Horizonte Latino. J Prof Nurs. 2005;21(4):210–5.CrossRefPubMed McQuiston C, Parrado EA, Martínez AP, Uribe L. Community-based participatory research with Latino community members: Horizonte Latino. J Prof Nurs. 2005;21(4):210–5.CrossRefPubMed
14.
go back to reference Hatch J, Moss N, Saran A, Presley-Cantrell L. Community research: partnership in black communities. Am J Prev Med. 1993;9(6):27–31. Hatch J, Moss N, Saran A, Presley-Cantrell L. Community research: partnership in black communities. Am J Prev Med. 1993;9(6):27–31.
15.
go back to reference Pinto R, Spector A, Rahman R, Gastolomendo J. Research advisory board members’ contributions and expectations in the USA. Health Promot Int. 2015;30(2):328–38. Pinto R, Spector A, Rahman R, Gastolomendo J. Research advisory board members’ contributions and expectations in the USA. Health Promot Int. 2015;30(2):328–38.
16.
go back to reference Minkler M. Ethical challenges for the “outside” researcher in community-based participatory research. Health Educ Behav. 2004;31(6):684–97.CrossRefPubMed Minkler M. Ethical challenges for the “outside” researcher in community-based participatory research. Health Educ Behav. 2004;31(6):684–97.CrossRefPubMed
17.
go back to reference Norris KC, Brusuelas R, Jones L, Miranda J, Duru OK, Mangione CM. Partnering with community-based organizations: an academic institution’s evolving perspective. System. 2007;5:8. Norris KC, Brusuelas R, Jones L, Miranda J, Duru OK, Mangione CM. Partnering with community-based organizations: an academic institution’s evolving perspective. System. 2007;5:8.
18.
go back to reference Benoit C, Jansson M, Millar A, Phillips R. Community-academic research on hard-to-reach populations: benefits and challenges. Qual Health Res. 2005;15(2):263–82.CrossRefPubMed Benoit C, Jansson M, Millar A, Phillips R. Community-academic research on hard-to-reach populations: benefits and challenges. Qual Health Res. 2005;15(2):263–82.CrossRefPubMed
19.
go back to reference Burkhalter JE, Cahill S, Shuk E, Guidry J, Corner G, Berk A, Candelario N, Kornegay M, Lubetkin EI. At the intersection of HIV/AIDS and Cancer a qualitative needs assessment of community-based HIV/AIDS service organizations. Health Educ Behav. 2012:1090198112459049 Burkhalter JE, Cahill S, Shuk E, Guidry J, Corner G, Berk A, Candelario N, Kornegay M, Lubetkin EI. At the intersection of HIV/AIDS and Cancer a qualitative needs assessment of community-based HIV/AIDS service organizations. Health Educ Behav. 2012:1090198112459049
20.
go back to reference Rhodes SD, Malow RM, Jolly C. Community-based participatory research (CBPR): a new and not-so-new approach to HIV/AIDS prevention, care, and treatment. AIDS Educ Prev. 2010;22(3):173.CrossRefPubMedPubMedCentral Rhodes SD, Malow RM, Jolly C. Community-based participatory research (CBPR): a new and not-so-new approach to HIV/AIDS prevention, care, and treatment. AIDS Educ Prev. 2010;22(3):173.CrossRefPubMedPubMedCentral
21.
go back to reference Nyden P, Wiewel W. Collaborative research: harnessing the tensions between researcher and practitioner. Am Sociol. 1992;23(4):43–55.CrossRef Nyden P, Wiewel W. Collaborative research: harnessing the tensions between researcher and practitioner. Am Sociol. 1992;23(4):43–55.CrossRef
23.
go back to reference Malone RE, Yerger VB, McGruder C, Froelicher E. “It's like Tuskegee in reverse”: a case study of ethical tensions in institutional review board review of community-based participatory research. Am J Public Health. 2006;96(11):1914–9.CrossRefPubMedPubMedCentral Malone RE, Yerger VB, McGruder C, Froelicher E. “It's like Tuskegee in reverse”: a case study of ethical tensions in institutional review board review of community-based participatory research. Am J Public Health. 2006;96(11):1914–9.CrossRefPubMedPubMedCentral
24.
go back to reference Dancy BL, Wilbur J, Talashek M, Bonner G, Barnes-Boyd C. Community-based research: barriers to recruitment of African Americans. Nurs Outlook. 2004;52(5):234–40.CrossRefPubMed Dancy BL, Wilbur J, Talashek M, Bonner G, Barnes-Boyd C. Community-based research: barriers to recruitment of African Americans. Nurs Outlook. 2004;52(5):234–40.CrossRefPubMed
27.
go back to reference Horberg MA, Hurley LB, Klein DB, Towner WJ, Kadlecik P, Antoniskis D, Mogyoros M, Brachman PS, Remmers CL, Gambatese RC. The HIV care cascade measured over time and by age, sex, and race in a large national integrated care system. AIDS Patient Care STDs. 2015;29(11):582–90.CrossRefPubMed Horberg MA, Hurley LB, Klein DB, Towner WJ, Kadlecik P, Antoniskis D, Mogyoros M, Brachman PS, Remmers CL, Gambatese RC. The HIV care cascade measured over time and by age, sex, and race in a large national integrated care system. AIDS Patient Care STDs. 2015;29(11):582–90.CrossRefPubMed
33.
go back to reference Chung K, Lounsbury DW. The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming. Soc Sci Med. 2006;63(8):2129–40.CrossRefPubMed Chung K, Lounsbury DW. The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming. Soc Sci Med. 2006;63(8):2129–40.CrossRefPubMed
34.
go back to reference Torres-Harding S, Turner T. Assessing Racial Microaggression Distress in a Diverse Sample. Eval Health Prof. 2014:0163278714550860. Torres-Harding S, Turner T. Assessing Racial Microaggression Distress in a Diverse Sample. Eval Health Prof. 2014:0163278714550860.
35.
go back to reference Sue DW, Capodilupo CM, Torino GC, Bucceri JM, Holder A, Nadal KL, Esquilin M. Racial microaggressions in everyday life: implications for clinical practice. Am Psychol. 2007;62(4):271.CrossRefPubMed Sue DW, Capodilupo CM, Torino GC, Bucceri JM, Holder A, Nadal KL, Esquilin M. Racial microaggressions in everyday life: implications for clinical practice. Am Psychol. 2007;62(4):271.CrossRefPubMed
36.
go back to reference Rollock N. Unspoken rules of engagement: navigating racial microaggressions in the academic terrain. Int J Qual Stud Educ. 2012;25(5):517–32.CrossRef Rollock N. Unspoken rules of engagement: navigating racial microaggressions in the academic terrain. Int J Qual Stud Educ. 2012;25(5):517–32.CrossRef
37.
go back to reference Dwyer SC, Buckle JL. The space between: On being an insider-outsider in qualitative research. International journal of qualitative methods. 2009;8(1):54–63.CrossRef Dwyer SC, Buckle JL. The space between: On being an insider-outsider in qualitative research. International journal of qualitative methods. 2009;8(1):54–63.CrossRef
38.
go back to reference Gair S. Feeling their stories contemplating empathy, insider/outsider positionings, and enriching qualitative research. Qual Health Res. 2012;22(1):134–43.CrossRefPubMed Gair S. Feeling their stories contemplating empathy, insider/outsider positionings, and enriching qualitative research. Qual Health Res. 2012;22(1):134–43.CrossRefPubMed
39.
go back to reference Morin SF, Morfit S, Maiorana A, Aramrattana A, Goicochea P, Mutsambi JM, Robbins JL, Richards TA. Building community partnerships: case studies of Community Advisory Boards at research sites in Peru, Zimbabwe, and Thailand. Clinical Trials. 2008;5(2):147–56.CrossRefPubMed Morin SF, Morfit S, Maiorana A, Aramrattana A, Goicochea P, Mutsambi JM, Robbins JL, Richards TA. Building community partnerships: case studies of Community Advisory Boards at research sites in Peru, Zimbabwe, and Thailand. Clinical Trials. 2008;5(2):147–56.CrossRefPubMed
40.
go back to reference Pratt B, Lwin KM, Zion D, Nosten F, Loff B, Cheah PY. Exploitation and community engagement: can community advisory boards successfully assume a role minimising exploitation in international research? 2014. Pratt B, Lwin KM, Zion D, Nosten F, Loff B, Cheah PY. Exploitation and community engagement: can community advisory boards successfully assume a role minimising exploitation in international research? 2014.
41.
go back to reference Lwin KM, Cheah PY, Cheah PK, White NJ, Day NP, Nosten F, Parker M. Motivations and perceptions of community advisory boards in the ethics of medical research: the case of the Thai-Myanmar border. BMC Med Ethics. 2014;15(1):1.CrossRef Lwin KM, Cheah PY, Cheah PK, White NJ, Day NP, Nosten F, Parker M. Motivations and perceptions of community advisory boards in the ethics of medical research: the case of the Thai-Myanmar border. BMC Med Ethics. 2014;15(1):1.CrossRef
42.
go back to reference Mosavel M, Simon C, Van Stade D, Buchbinder M. Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Soc Sci Med. 2005;61(12):2577–87.CrossRefPubMedPubMedCentral Mosavel M, Simon C, Van Stade D, Buchbinder M. Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Soc Sci Med. 2005;61(12):2577–87.CrossRefPubMedPubMedCentral
43.
go back to reference Williams DR, Gonzalez HM, Williams S, Mohammed SA, Moomal H, Stein DJ. Perceived discrimination, race and health in South Africa. Soc Sci Med. 2008;67(3):441–52.CrossRefPubMedPubMedCentral Williams DR, Gonzalez HM, Williams S, Mohammed SA, Moomal H, Stein DJ. Perceived discrimination, race and health in South Africa. Soc Sci Med. 2008;67(3):441–52.CrossRefPubMedPubMedCentral
44.
go back to reference Reddy P, Buchanan D, Sifunda S, James S, Naidoo N. The role of community advisory boards in health research: Divergent views in the South African experience. SAHARA J. 2011;7(3):2-8. Reddy P, Buchanan D, Sifunda S, James S, Naidoo N. The role of community advisory boards in health research: Divergent views in the South African experience. SAHARA J. 2011;7(3):2-8.
45.
go back to reference Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC. Community advisory boards in community-based participatory research: a synthesis of best processes. Prev Chronic Dis. 2011;8(3):A70.PubMedPubMedCentral Newman SD, Andrews JO, Magwood GS, Jenkins C, Cox MJ, Williamson DC. Community advisory boards in community-based participatory research: a synthesis of best processes. Prev Chronic Dis. 2011;8(3):A70.PubMedPubMedCentral
Metadata
Title
“A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research
Authors
Stella Safo
Chinazo Cunningham
Alice Beckman
Lorlette Haughton
Joanna L. Starrels
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Medical Research Methodology / Issue 1/2016
Electronic ISSN: 1471-2288
DOI
https://doi.org/10.1186/s12874-016-0181-8

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