Literature DB >> 22982845

Engaging the Deaf American sign language community: lessons from a community-based participatory research center.

Michael McKee1, Denise Thew, Matthew Starr, Poorna Kushalnagar, John T Reid, Patrick Graybill, Julia Velasquez, Thomas Pearson.   

Abstract

BACKGROUND: Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers.
OBJECTIVES: The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area.
METHODS: We review the process of CBPR in a Deaf ASL community and identify the lessons learned.
RESULTS: Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities.
CONCLUSIONS: This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations.

Entities:  

Mesh:

Year:  2012        PMID: 22982845      PMCID: PMC3576694          DOI: 10.1353/cpr.2012.0037

Source DB:  PubMed          Journal:  Prog Community Health Partnersh        ISSN: 1557-0541


  29 in total

1.  Can communities and academia work together on public health research? Evaluation results from a community-based participatory research partnership in Detroit.

Authors:  P M Lantz; E Viruell-Fuentes; B A Israel; D Softley; R Guzman
Journal:  J Urban Health       Date:  2001-09       Impact factor: 3.671

2.  Using community-based participatory research to address social determinants of health: lessons learned from Seattle Partners for Healthy Communities.

Authors:  James Krieger; Carol Allen; Allen Cheadle; Sandra Ciske; James K Schier; Kirsten Senturia; Marianne Sullivan
Journal:  Health Educ Behav       Date:  2002-06

3.  Telephone ownership and deaf people: implications for telephone surveys.

Authors:  S Barnett; P Franks
Journal:  Am J Public Health       Date:  1999-11       Impact factor: 9.308

4.  Mammograms and Pap smears for Australian deaf women.

Authors:  Judy Wollin; Ruth Elder
Journal:  Cancer Nurs       Date:  2003-10       Impact factor: 2.592

5.  Community-based participatory research: implications for public health funding.

Authors:  Meredith Minkler; Angela Glover Blackwell; Mildred Thompson; Heather Tamir
Journal:  Am J Public Health       Date:  2003-08       Impact factor: 9.308

6.  Community participatory research with deaf sign language users to identify health inequities.

Authors:  Steven Barnett; Jonathan D Klein; Robert Q Pollard; Vincent Samar; Deirdre Schlehofer; Matthew Starr; Erika Sutter; Hongmei Yang; Thomas A Pearson
Journal:  Am J Public Health       Date:  2011-10-20       Impact factor: 9.308

7.  The medical communication of deaf patients.

Authors:  E McEwen; H Anton-Culver
Journal:  J Fam Pract       Date:  1988-03       Impact factor: 0.493

8.  HIV/AIDS knowledge and information sources among deaf and hearing college students.

Authors:  K L Heuttel; W G Rothstein
Journal:  Am Ann Deaf       Date:  2001-07

9.  The severely to profoundly hearing-impaired population in the United States: prevalence estimates and demographics.

Authors:  B B Blanchfield; J J Feldman; J L Dunbar; E N Gardner
Journal:  J Am Acad Audiol       Date:  2001-04       Impact factor: 1.664

10.  The health status and health care utilization of deaf and hard-of-hearing persons.

Authors:  P Zazove; L C Niemann; D W Gorenflo; C Carmack; D Mehr; J C Coyne; T Antonucci
Journal:  Arch Fam Med       Date:  1993-07
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  14 in total

Review 1.  Community-Based Participatory Research and Human-Centered Design Principles to Advance Hearing Health Equity.

Authors:  Nicole L Marrone; Carrie L Nieman; Laura Coco
Journal:  Ear Hear       Date:  2020-06-13       Impact factor: 3.562

2.  Health literacy and the disenfranchised: the importance of collaboration between limited English proficiency and health literacy researchers.

Authors:  Michael M McKee; Michael K Paasche-Orlow
Journal:  J Health Commun       Date:  2012

3.  Deaf patient-provider communication and lung cancer screening: Health Information National Trends survey in American Sign Language (HINTS-ASL).

Authors:  P Kushalnagar; Alina Engelman; G Sadler
Journal:  Patient Educ Couns       Date:  2018-03-05

4.  Dimensions of Deaf/Hard-of-Hearing and Hearing Adolescents' Health Literacy and Health Knowledge.

Authors:  Scott R Smith; Vincent J Samar
Journal:  J Health Commun       Date:  2016-08-22

Review 5.  [Deaf patients in psychiatry].

Authors:  Matthäus Fellinger; Johannes Fellinger
Journal:  Neuropsychiatr       Date:  2013-11-22

6.  Sexual health behaviors of Deaf American Sign Language (ASL) users.

Authors:  Erica Heiman; Sharon Haynes; Michael McKee
Journal:  Disabil Health J       Date:  2015-06-30       Impact factor: 2.554

7.  Ethical issues in conducting research with deaf populations.

Authors:  Michael McKee; Deirdre Schlehofer; Denise Thew
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

8.  Design suggestions for an mHealth app to facilitate communication between pharmacists and the Deaf: perspective of the Deaf community (HEARD Project).

Authors:  Sabrina Anne Jacob; Elizabeth Yie-Chuen Chong; Soo Leng Goh; Uma Devi Palanisamy
Journal:  Mhealth       Date:  2021-04-20

9.  Using a social marketing framework to evaluate recruitment of a prospective study of genetic counseling and testing for the deaf community.

Authors:  Yoko Kobayashi; Patrick Boudreault; Karin Hill; Janet S Sinsheimer; Christina G S Palmer
Journal:  BMC Med Res Methodol       Date:  2013-11-25       Impact factor: 4.615

10.  Evaluating community engagement in an academic medical center.

Authors:  Peter G Szilagyi; Laura P Shone; Ann M Dozier; Gail L Newton; Theresa Green; Nancy M Bennett
Journal:  Acad Med       Date:  2014-04       Impact factor: 6.893

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