Leave No One Behind: Exploring the Impact of the COVID-19 Pandemic on People with Disabilities in North Carolina (2020-2021)
Some populations are at higher risk of contracting COVID-19 based on factors such as close living accommodations, challenges around implementing preventive measures and barriers to accessing care for either testing or intervention. People with disabilities are reported to be disproportionately affected by COVID-19 due to factors such as lack of access to necessary therapies due to social distancing. However, there is currently limited information on this population and their lived experiences, which has hindered practitioners’ and policymakers’ abilities to develop interventions to help this diverse group.
This project team will investigate the lived experiences of North Carolinians with disabilities and their families across different COVID-19 phases in order to make policy and practice recommendations.
Team members will investigate the lived experiences of people with disabilities in Orange, Durham and Wake counties to develop evidence-based and inclusive policy and practice response mechanisms. Triangulating data from independent sources, the team will use four interrelated project methodologies, all of which can be completed in a digital, remote, virtual, sheltering-in-place setting:
- Method 1: Team members will conduct a series of in-depth, semistructured interviews and focus group discussions with people with disabilities, their families and service providers in Orange, Durham and Wake counties to explore the experiences, needs, extent of inclusion and barriers in access to services and assistance for people with disabilities during the COVID-19 pandemic. Interview guides will be used to explore the background and daily lives of household members and the impact that having a disability has had on individuals’ and families’ COVID-19 experience. Questions will examine knowledge of and views on available response mechanisms, challenges in accessing services and assistance as well as ongoing needs around health, rehabilitation, nutrition and protection. An applied thematic approach will be used to analyze findings from the interviews.
- Method 2: Team members will conduct a literature review of research and policy documents related to COVID-19 activities, policies and guidelines regarding inclusiveness of people with disabilities in emergency responses. The literature review will provide an updated framework of policies and practices in this emerging area and will be used as a gauge and assess the results of the key informant interviews regarding the inclusiveness and effectiveness of the system.
- Method 3: When the key informant interviews, analysis and the literature review are complete, the team will hold a focus group discussion with community stakeholders from Orange, Durham and Wake counties.
- Method 4: After interviews and focus groups are completed, the team will use an arts-based interactive qualitative research approach, inviting a subgroup of the first wave of collaborators to participate in a second wave of data collection. Interactive arts-based methods are participant-driven and reverse the power dynamic of traditional approaches where the researchers set the agenda.
These methods will inform how inclusive qualitative research with people with disabilities can be accomplished in a post-COVID-19 world.
Publications; project website; podcasts; blogs; evidence-based tools for service providers
Fall 2020 – Summer 2021
- Fall 2020: Qualitative data training; data collection and analysis (Method 1); literature review (Method 2)
- Spring 2021: Begin focus group discussions (Method 3); begin arts-based interactive approach (Method 4); prepare manuscript for publication
- Summer 2021: Finish manuscript
- Michel Landry, School of Medicine
- Marion Quirici, Arts & Sciences-Thompson Writing Program
- Kearsley Stewart, Duke Global Health Institute
/graduate Team Members
Deepti Agnihotri, Global Health - MSc
Elizabeth Aimone, Global Health - MSc
Susan Webb, Master of Fine Arts - Dance
/undergraduate Team Members
Ashwin Kulshrestha, Biology (BS), Sociology (AB2)
Symon Ma, Chemistry (BS)
Simran Prakash, Visual and Media Studies (AB)
Anil Prasad, English (AB)
/yfaculty/staff Team Members
Anna Tupetz, School of Medicine-Surgery: Emergency Medicine
/zcommunity Team Members
The Alliance of Disability Advocates