Voices Lost in Crisis: Adults with IDD Share Their Lived Experience During the COVID-19 Pandemic

person wearing mask

PURPOSE

The purpose of this research project is to gather insight into the lived experiences of adults with Intellectual or Developmental Disabilities (IDD) during the COVID-19 pandemic. This research should address issues related to the social isolation, mental health, and overall quality of life for persons with IDD living in Ontario during the COVID-19 pandemic are identified.

PROCESS

The research project is centered around a Participatory Action Research (PAR) approach to ensure that the research project is based on the true experiences of the participants. The methodology being adopted is Photovoice, which will ensure that participants of all abilities are able to engage in the research. Using photographs and journaling as the mediums through which participants convey their experience, as well as individual and group discussions ensures that the researchers can capture an accurate representation of the collective voice for this population.

Phase 1: Training the Participants

The research begins by training the participants on the required skills for the project which includes the following: Introduction to the Research and Safe COVID-19 Community Practices, Obtaining Informed Consent, How to Take a Good Photo, and How to Write a Journal. This phase is expected to take place over the course of one (1) month (1 training session per week).

Phase 2: Photographs and Reflection

Participants will begin collecting photographs to be used in the exhibit and maintaining a journal to be used in the individual and group discussions. Participants will take pictures of things that have meaning in their life continuously throughout the course of the project. The individual and group discussions will be held on a weekly or bi-weekly basis depending on participant availability once the training has been completed and participants have begun accumulating photographs. Researchers will work with the participants to probe additional information regarding the photographs that was not obtained during the initial journal entry. This phase is expected to take place over the course of two to three (2-3) months.

Phase 3: Photo Exhibit

Not @ the Museum Thursdays (Sept 9th & 16th 2021)

Persons with intellectual and developmental disabilities (IDD) collaborated on a Photovoice project to explore their lived experiences during the COVID-19 pandemic. Thirteen persons with IDD from across Ontario participated (including Niagara, Haldimand, Hamilton, Sudbury and Wellington regions). This two-part lecture series will review the emancipatory research methodology and results.  In part one, we will review the participatory action research process, where participants collaborated on the research questions, and learned to use a camera, take pictures, and use journaling to express their experiences throughout the pandemic. In part two, we will review the common and salient experiences. Participants will discuss their experience of loss and grief, social distancing and lockdown, missing friends, family, and work and the impact of COVID-19 on their mental health and relationships. They will also describe societal concerns related to ableism, inaccessibility, accommodations, and intersectionality, while demonstrating resilience in problem-solving, use of resources and technology, and looking for joy in the small things. In these lectures, we hope to raise awareness about the impact of the pandemic on the lives of persons with disabilities.

Part 1: https://www.youtube.com/watch?v=gi1urfPRVr0

Part 2: https://www.youtube.com/watch?v=-NDlE1Fh944

OUTCOMES

The results of this research project will help increase our understanding of the lives of adults with IDD during a global pandemic.

Additionally, the research will help to find areas of strength and resilience, as well as barriers and challenges that need to be addressed at a larger, community level through changes to policy and practice.

Research Ethics

This study has been reviewed and received by Brock University’s Research Ethics Board #20-024-MULLINS. If you have any questions about your rights as a research participant, or photograph subject, please contact the Brock University Research Ethics Officer (905-688-5550 ext. 305, reb@brocku.ca).

PHOTO GALLERY

Click here to visit our facebook page for complete details!

Additional contact information

Primary Investigator

Dr. Laura Mullins, Assistant Professor, Department of Applied Disability Studies at lmullins@brocku.ca.

Co-Investigator

Dr. Maureen Connolly, Professor, Departments of Kinesiology & Child and Youth Studies at mconnolly@brocku.ca.

Research Assistants

Courtney Bishop, Charity Blaine, & Mechenzie Strong