Application of the truth and reconciliation model to meaningfully engage deaf sign language users in the research process.

Abstract

Objectives: One of the most underrepresented public health populations is the U.S. Deaf community-a minority group of 500,000+ individuals who communicate using American Sign Language (ASL). Research on Deaf health outcomes is significantly lacking due to inaccessible research procedures and mistrust of researchers that stems from historical mistreatment of Deaf people (i.e., Audism). Methods: Following the Truth and Reconciliation Model, we hosted three Deaf community forums between October and November 2016 across New England. We invited attendees to share their experiences in the research world and make recommendations about how researchers can better include Deaf people in their studies. A select group of hearing researchers served as representatives of the research community and to issue a formal apology on behalf of this community. Results: Forum attendees (n = 22; 5% racial/ethnic minority; 59% female) emphasized the following themes: Research conducted within general population samples is not an activity in which Deaf people can or will be included; a general mistrust of hearing people, including hearing researchers; researchers' frequent failure to communicate study results back to the Deaf community or the community-at-large; and a tendency of researchers to directly benefit from data provided by Deaf participants, without making any subsequent efforts to return to the community to give back or provide useful intervention. Conclusions: Many injustices and forms of mistreatment are still ongoing; therefore, we recognize that our team's efforts to foster an open dialogue between the research community and the Deaf community must be an ongoing, iterative practice. Public Significance StatementDeaf sign language users are often hesitant to participate in public health studies due to mistrust of researchers. The Truth and Reconciliation Model has been used to improve relationships between researchers and members of sociolinguistic minority groups. We used this model as part of our initial research activities to begin to develop trust between our research team and the local Deaf community.

Innovative theory and methods for the next generation of diversity, equity, and inclusion sciences: Introduction to the special issue.

“…They provide suggestions for integrating healing research on diversity, equity, and inclusion sciences. Anderson et al (2021) proposed the Truth and Reconciliation Model to promote engagement of the deaf community in the U.S. who employs American Sign Language, one of the most underrepresented groups in research. Anderson et al (2021) implemented community forums in New England, invited deaf people to participate and share their experiences, and issued a formal apology on behalf of the research community.…”

“…Anderson et al (2021) proposed the Truth and Reconciliation Model to promote engagement of the deaf community in the U.S. who employs American Sign Language, one of the most underrepresented groups in research. Anderson et al (2021) implemented community forums in New England, invited deaf people to participate and share their experiences, and issued a formal apology on behalf of the research community. Four themes emerged from the discussions, such as the notion that deaf people are not included in investigations with the general public; mistrust toward hearing people and researchers; how the deaf community is often not informed of research findings; and the fact that researchers who benefit from data given by deaf participants frequently make no effort to return to the community and offer anything useful.…”

“…Taken together, these articles by Lee et al (2021) and Anderson et al (2021) address issues of research accessibility and ability, concepts that are rarely addressed as part of research agendas, even with respect to BIPOC research participants and community members.…”

How to Share Research about Education and Employment with the Deaf Community

“…Deaf community members have expressed bitter feelings associated with a long history of researchers entering the community to collect data, never to be heard from again. 12 Given this history, it is crucial for researchers to commit to returning to the Deaf community at the end of a study to share their results and em-phasize how these results will directly benefit the Deaf community. Additionally, we strongly recommend that important updates, progress, and research findings be communicated throughout the course of a project, rather than only at the end of a study.…”

Advancing an ethical imperative for collaborative approaches to evaluation with low incidence and underserved communities: Insights from a DeafBlind Support Services pilot program evaluation

“…The current study describing insights from an evaluation of the DeafBlind Support Services program provides a unique evaluation setting in which to advance an ethical imperative for collaborative approaches to evaluation for the following reasons: First, the DeafBlind community is culturally and linguistically unique and their accessible language needs are not typically recognised by evaluators (Anderson et al, 2023); second, the commitment of the evaluation stakeholders to collaborative approaches to evaluation and building transformative partnerships; and third, the expertise and experience of the evaluation team members for implementing collaborative approaches to evaluation under conditions of severe time, financial, and human resource constraints. The conceptual ethical evaluation framework of Chouinard and Cousins (2021), which highlights the philosophical, pragmatic, and political applications of ethical evaluation, guided our decision-making related to stakeholder participation, evaluation design, and the dissemination of program outcomes.…”