Inclusion of Black and Latina Parents With Physical Disabilities in a Qualitative Research Study: A Peer Researcher Training Model

Author:

Lee-Rambharose Jennifer1ORCID,Smith Lauren D.1ORCID,The Kim1,Horner-Johnson Willi2,Long-Bellil Linda3,Watkins Heather4,Senda Jennifer4,Garr-Colzie Nancy4,Palacios Maria R.4,Mitra Monika1

Affiliation:

1. Lurie Institute for Disability Policy, Heller School for Social Policy and Management, Brandeis University, USA

2. Oregon Health and Science University Institute on Development and Disability, USA

3. UMass Chan Medical School Eunice Kennedy Shriver Center, USA

4. Independent Consultant, Lurie Institute for Disability Policy, Brandeis University Heller School for Social Policy and Management, USA

Abstract

Public health qualitative research has largely failed to achieve full inclusion of people with disabilities and Black people and Latinx/as. Although there is a small, but growing, community of academic researchers from each of these communities, there has been limited involvement of non-academic community members in research. While Community-Based Participatory Research (CBPR) has informed the inclusion of marginalized groups in research for decades, instances of full inclusion of disabled Black people and Latinx/as in public health research have been minimal. One way to ensure the inclusion of Black/Latinx community members with disabilities is to involve them as peer researchers. As part of a qualitative study examining pregnancy experiences of individuals with physical disabilities from Black/Latinx communities, academic researchers trained four peer researchers to conduct interviews and analyze the data. This paper describes our approach, which may serve as a model for training peer researchers in qualitative research methodology for future studies. All peer researchers were women who identified as Black or Latina parents with physical disabilities. This approach was chosen due to the study’s focus on the intersections of disability, race, ethnicity, and pregnancy, and applied a disability justice lens. Although CBPR offers important principles for research existing literature suggests CBPR is not always inclusive and power sharing. Therefore, we developed a research training model which places a unique and timely focus on the intersections of CBPR, racial and disability justice, the importance of building the capacity of Black and Latina disabled peer researchers, and its importance to building community relationships and trust.

Funder

Eunice Kennedy Shriver National Institute of Child Health and Human Development

National Institute on Disability, Independent Living, and Rehabilitation Research

Publisher

SAGE Publications

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