The Value of Community-Engaged Research for Student Researchers in Disability Studies


Authors

Cassidy Schulz

Meriem Aroua

Unnati Sharma

Affiliations

Community Rehabilitation and Disability Studies, Department of Community Health Sciences,

Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

Corresponding Author

Correspondence concerning this article should be addressed to

Email: Meriem Aroua

Abstract

Keywords:

Participatory action research; PAR; people with disabilities; pandemic; COVID-19; coronavirus; inclusion; community-based research, student researchers, disability studies

The COVID-19 pandemic has affected the health, livelihood, and means of income of many Canadians around the world, with vulnerable populations such as people with disabilities facing significant social and structural inequalities. We were able to participate in a community-engaged research project to understand the experiences of people with disabilities during this pandemic, using a participatory action research (PAR) framework. During this project, we had the opportunity to attend online workshops, mentor other students, and collaborate as a team, which helped develop our professional research skills. Despite the ongoing challenges with this emerging research field, we still managed to focus on our research goals, and continued to analyze new knowledge. Based on our experiences, we believe that student researchers contributing to community-engaged research within a PAR framework can function as an excellent learning resource and can promote diverse literature studies and research involvement within disability studies.

Introduction

The Value of Community-Engaged Research for Student Researchers in Disability Studies Our Perspective on Student Research

As undergraduate students, we had the opportunity to learn about different types of research methods and data analysis as part of our senior practicum. Our knowledge from a disability research methods course taught in our faculty highly influenced our participation in choosing this project, as we were able to use practical elements of the course in our research, such as the use of online library databases and application of proper research methodology. In this project, we focused on the impacts of COVID-19 in terms of social and structural health determinants, such as access to COVID-19 updates and financial support systems, which are shaped by the distribution of the power and resources within a society (Centers for Disease Control and Prevention, 2019). We were able to conduct a preliminary literature review and attend workshops on these topics, which helped ground the rest of our work. The contents of the survey were assembled and analyzed by several members of a task force of people with disabilities, and this illustrated to us what participatory action research can look like. We were also able to reciprocate our learning by mentoring second year community rehabilitation students throughout this research project and enhancing our effective leadership skills.

Going into the field of research during COVID-19 was challenging, especially because we were examining the impacts of COVID-19 on people with disabilities, which very few studies had done at the time. Sometimes, we had a difficult time finding concrete research studies for our literature review on certain topics, as it was an unprecedented research subject. Receiving plain language training was important for us in enhancing inclusion in our survey, because as post-secondary students, we often become immune to lengthy literature. These kinds of texts can be confusing to the average reader, and do not always meet the expectations of communication in important settings (Maaß, 2020, pp. 19-20). However, we strived to address these issues by accessing vastly unique modes of research, asking questions, and brainstorming together, expanding our problem-solving skill set. We have come to learn the intricate steps of vital research processes like applying for ethics approval, survey dissemination techniques, and organizing and compiling data, but more importantly how to conduct empirical research within the disability community, and the application of appropriate theoretical frameworks that were previously learned in our classes.

The Role of Participatory Action Research in this Project

Initially, we did not have practical experiences with participatory action research (PAR), and we mainly understood it as a theoretical framework. However, we quickly became familiarized with its core concepts when working with the qualitative aspects of our study. According to Mackenzie et al. (2012), PAR is “-an applied research approach, in which participants – those with a stake in the outcomes of the research – take on an active co-researcher role” (p. 12). Using this approach in our research study challenged the normative research process and involved acknowledging that individuals who have undergone marginalization and oppression had deeper knowledge about their lived experiences. The PAR framework also utilizes a ‘bottom-up’ mode of analysis, while placing additional emphasis on the critical insights of the community stakeholders that typically have underrepresented perspectives in research (Cahill, 2007; Mackenzie et al., 2012). This was especially true in our case, since the negative consequences that people with disabilities faced in the pandemic were often exasperated by policies, and increased “-discrimination and existing feelings of social isolation, which persons with disability have disproportionally endured throughout the COVID-19 pandemic” (Kohek et al., 2020). PAR also supports community development as it creates an inclusive system, engaging community members and researchers for equal contribution in a joint process, with the goal of effecting change in mind. This falls under our goals of identifying gaps in services, promoting change in government policy, and amplifying the experiences of people with disabilities to the public, making our research findings much more meaningful.

The Future Implications of our Experiences

We feel as though we have become well-rounded student researchers that have advanced experiences with the theoretical framework of PAR and implementing qualitative data collection. Furthermore, we have developed an intimate understanding of various crisis response skills by analyzing previous research on natural disasters and global health crises, which helped us draw parallels with the COVID-19 impacts that we researched. We were able to apply knowledge from our courses, and gain perspective on the crucial role of social networking in community-engaged research, especially when disseminating our survey to people in the disability community. Since we plan on pursuing rehabilitation and policy focused graduate programs, we feel more prepared to incorporate individualized research and PAR in our future careers. We intend on amplifying the voices of people with disabilities and engaging marginalized populations in community-related efforts. We believe this unique learning opportunity has expanded our capabilities as students, researchers, community-partners, and advocates in disability studies. As future professionals with a background in community rehabilitation, we now have experience integrating our knowledge into future research efforts, to focus on increasing policy inclusion for people with disabilities during times of international crisis.

References

Bulman, M. (2020) Majority of disabled people feel their needs have been overlooked during pandemic, figures show. Retrieved from https://www.independent.co.uk/news/uk/home-news/covid-uk-disabled-people-disability- act-b1695795.html

Cahill, C. (2007). Including excluded perspectives in participatory action research. Design Studies, 28(3), 325-340. https://doi.org/10.1016/j.destud.2007.02.006

Centers for Disease Control and Prevention (CDC). (2019, December 19). Social determinants of health. Centers for Disease Control and Prevention. https://www.cdc.gov/nchhstp/socialdeterminants/index.html. Government of Alberta, H. (2019). Living allowance. Retrieved from http://www.humanservices .alberta.ca/AWOnline/AISH/7242.html#:~:text=AISH%20provides%20a%20maximum%20monthly,Government%20of%20Alberta%20group%20home.

Kohek, J., Seth, A., Edwards, M., & Zwicker, J. (2020, August 20). Mandatory mask bylaws: Consideration beyond exemption for persons with disabilities. The School of Public Policy Publications. https://doi.org/10.11575/sppp.v13i0.70911.

Maaß, C. (2020). Easy Language – Plain Language – Easy Language Plus: Balancing Comprehensibility and Acceptability. Frank & Timme.

Mackenzie, J., Tan, P. L., Hoverman, S., & Baldwin, C. (2012). The value and limitations of participatory action research methodology. Journal of hydrology, 474, 11-21. https://doi.org/10.1016/j.jhydrol.2012.09.008



 

International Journal of Disability, Community & Rehabilitation
Volume 19, Student Perspectives
www.ijdcr.ca
ISSN 1703-3381