Collaboration With Deaf Communities to Conduct Accessible Health Surveillance

Barnett, Steven; Matthews, Kelly; Sutter, Erika; DeWindt, Lori; Pransky, Jacqueline A.; O’Hearn, Amanda; David, Tamala; Pollard, Robert Q.; Samar, Vincent J.; Pearson, Thomas A.

doi:10.1016/j.amepre.2016.10.011

Cited by 21 publications

(22 citation statements)

References 9 publications

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“…In the colorectal cancer healthy living study, Chinatown community members successfully challenged the extensive use of academic theory for the lay health workers training (Jih et al, 2016). Similarly, the National Center for Deaf Health Research (NCDHR) established the primacy of ASL through many years of working with the IRB to transform spoken and written English surveys and consent forms into ASL videos (Barnett et al, 2011; Barnett et al, 2017; Graybill et al, 2010). The Center has supported Deaf community members to claim their language power, including challenging academic and English-language terminology.…”

Section: Resultsmentioning

confidence: 99%

Power Dynamics in Community-Based Participatory Research: A Multiple–Case Study Analysis of Partnering Contexts, Histories, and Practices

et al. 2019

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Community-based participatory research has a long-term commitment to principles of equity and justice with decades of research showcasing the added value of power-sharing and participatory involvement of community members for achieving health, community capacity, policy, and social justice outcomes. Missing, however, has been a clear articulation of how power operates within partnership practices and the impact of these practices on outcomes. The National Institutes of Health–funded Research for Improved Health study (2009-2013), having surveyed 200 partnerships, then conducted seven in-depth case studies to better understand which partnership practices can best build from community histories of organizing to address inequities. The diverse case studies represented multiple ethnic–racial and other marginalized populations, health issues, and urban and rural areas and regions. Cross-cutting analyses of the qualitative results focus on how oppressive and emancipatory forms of power operate within partnerships in response to oppressive conditions or emancipatory histories of advocacy within communities. The analysis of power was conducted within each of the four domains of the community-based participatory research conceptual model, starting from how contexts shape partnering processes to impact short-term intervention and research outputs, and contribute to outcomes. Similarities and differences in how partnerships leveraged and addressed their unique contexts and histories are presented, with both structural and relational practices that intentionally addressed power relations. These results demonstrate how community members draw from their resilience and strengths to combat histories of injustice and oppression, using partnership principles and practices toward multilevel outcomes that honor community knowledge and leadership, and seek shared power, policy, and community transformation changes, thereby advancing health equity.

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Section: Resultsmentioning

confidence: 99%

Power Dynamics in Community-Based Participatory Research: A Multiple–Case Study Analysis of Partnering Contexts, Histories, and Practices

et al. 2019

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“…The analyses used existing data from the Rochester Deaf Health Survey–2013 (RDHS-2013) developed and conducted by the Rochester Prevention Research Center: National Center for Deaf Health Research [35]. The University of Rochester IRB determined the RDHS-2013 to be surveillance and not research.…”

Section: Methodsmentioning

confidence: 99%

Considering parental hearing status as a social determinant of deaf population health: Insights from experiences of the "dinner table syndrome"

et al. 2018

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The influence of early language and communication experiences on lifelong health outcomes is receiving increased public health attention. Most deaf children have non-signing hearing parents, and are at risk for not experiencing fully accessible language environments, a possible factor underlying known deaf population health disparities. Childhood indirect family communication–such as spontaneous conversations and listening in the routine family environment (e.g. family meals, recreation, car rides)–is an important source of health-related contextual learning opportunities. The goal of this study was to assess the influence of parental hearing status on deaf people’s recalled access to childhood indirect family communication. We analyzed data from the Rochester Deaf Health Survey–2013 (n = 211 deaf adults) for associations between sociodemographic factors including parental hearing status, and recalled access to childhood indirect family communication. Parental hearing status predicted deaf adults’ recalled access to childhood indirect family communication (χ2 = 31.939, p < .001). The likelihood of deaf adults reporting “sometimes to never” for recalled comprehension of childhood family indirect communication increased by 17.6 times for those with hearing parents. No other sociodemographic or deaf-specific factors in this study predicted deaf adults’ access to childhood indirect family communication. This study finds that deaf people who have hearing parents were more likely to report limited access to contextual learning opportunities during childhood. Parental hearing status and early childhood language experiences, therefore, require further investigation as possible social determinants of health to develop interventions that improve lifelong health and social outcomes of the underserved deaf population.

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“…Health care disparities in the D/deaf and hard of hearing (d/DHH) population have been well documented (S. Barnett & Franks, 2002; S. Barnett et al, 2011;S. L. Barnett et al, 2017;Kushalnagar et al, 2019;McKee et al, 2011;Woodcock & Pole, 2007).…”

Section: Introductionmentioning

confidence: 99%

Promoting cultural awareness, professionalism, and communication skills in medicine through anatomy: The Deaf culture session

Greene

Scott

2021

Clinical Anatomy

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The anatomy curriculum is a place where professionalism can be learned and practiced, including training in cultural competence and communication skills for working with diverse populations. One population that has received little attention in terms of medical education are d/Deaf and hard of hearing (d/DHH) patients, although there is much evidence to support health care disparities in this population. Several major contributing factors include differing views of deafness between medical professionals and those who are culturally Deaf, a lack of understanding of Deaf culture

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Collaboration With Deaf Communities to Conduct Accessible Health Surveillance

Abstract: Community-engaged research with deaf populations identifies strengths and priorities, providing essential information otherwise missing from existing public health surveillance, and forming a foundation for collaborative dissemination to facilitate broader inclusion of deaf communities.

Cited by 21 publications

References 9 publications

Power Dynamics in Community-Based Participatory Research: A Multiple–Case Study Analysis of Partnering Contexts, Histories, and Practices

Power Dynamics in Community-Based Participatory Research: A Multiple–Case Study Analysis of Partnering Contexts, Histories, and Practices

Considering parental hearing status as a social determinant of deaf population health: Insights from experiences of the "dinner table syndrome"

Promoting cultural awareness, professionalism, and communication skills in medicine through anatomy: The Deaf culture session

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