Gloria Bonner1, Sharon Williams2, Diana Wilkie3, Alysha Hart1, Glenda Burnett1, Geraldine Peacock4. 1. 1 Department of Biobehavioral Health Science, College of Nursing, University of Illinois, Chicago, IL, USA. 2. 2 Department of Allied Health Sciences, Division of Speech and Hearing Sciences, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA. 3. 3 Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA. 4. 4 Department of Cardiology, Rush University Medical Center, Chicago, IL, USA.
Abstract
BACKGROUND: An initial and vital important step in recruiting participants for church-based hospice and palliative care research is the establishment of trust and credibility within the church community. Mistrust of medical research is an extremely important barrier hindering recruitment in African American (AA) communities. A church-based EOL dementia education project is currently being conducted at four large urban AA churches. Church leaders voiced mistrust concerns of previous researchers who conducted investigations in their faith-based institutions. We explored strategies to ameliorate the mistrust concerns. Specific aim: To identify trust-rebuilding elements for researchers following others who violated trust of AA church leaders. METHODS: Face-to-face, in-depth interviews were conducted from a convenient sample of four established AA church leaders. Interviews were held in the informants' churches to promote candor and comfort in revealing sensitive information about trust /mistrust. Content analysis framework was used to analyze the data. Elements identified from the analysis were then used to create themes. RESULTS: Multidimensional overarching themes emerged from the analysis included: Experience with researchers (positive and extremely negative), violation of trust and trust building strategies. CONCLUSIONS: Findings suggest that researchers who wish to conduct successful studies in the AA religious institutions must implement trust rebuilding strategies that include mutual respect, collaboration and partnership building. If general moral practices continue to be violated, threat to future hospice and palliative care research within the institutions may prevail. Thus, potential benefits are thwarted for the church members, AA community, and advancement of EOL care scholarship.
BACKGROUND: An initial and vital important step in recruiting participants for church-based hospice and palliative care research is the establishment of trust and credibility within the church community. Mistrust of medical research is an extremely important barrier hindering recruitment in African American (AA) communities. A church-based EOL dementia education project is currently being conducted at four large urban AA churches. Church leaders voiced mistrust concerns of previous researchers who conducted investigations in their faith-based institutions. We explored strategies to ameliorate the mistrust concerns. Specific aim: To identify trust-rebuilding elements for researchers following others who violated trust of AA church leaders. METHODS: Face-to-face, in-depth interviews were conducted from a convenient sample of four established AA church leaders. Interviews were held in the informants' churches to promote candor and comfort in revealing sensitive information about trust /mistrust. Content analysis framework was used to analyze the data. Elements identified from the analysis were then used to create themes. RESULTS: Multidimensional overarching themes emerged from the analysis included: Experience with researchers (positive and extremely negative), violation of trust and trust building strategies. CONCLUSIONS: Findings suggest that researchers who wish to conduct successful studies in the AA religious institutions must implement trust rebuilding strategies that include mutual respect, collaboration and partnership building. If general moral practices continue to be violated, threat to future hospice and palliative care research within the institutions may prevail. Thus, potential benefits are thwarted for the church members, AA community, and advancement of EOL care scholarship.
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