The Lived Experience of People with Disabilities During COVID-19
Main Article Content
Keywords
COVID-19 pandemic, people with disabilities, qualitative research, content analysis
Abstract
Aim: This study sought to understand the lived experiences of people with disabilities during the Covid-19 pandemic. Method: Our study disseminated a Qualtric survey which included an open-ended question, “Please describe in your own words your experience with COVID-19.” and solicited open textual responses about the lived experience of people with disabilities. This study focuses on the textual data that was analyzed using inductive content analysis (Elo & Kyngas, 2008). Results: Nine themes were described including social isolation, social responsibility, returning home, barriers to resources, job loss, positive impacts, academic impacts, emotional and physical impacts, and adjustment and coping. Discussion: Our findings reveal the unique challenges and impact the pandemic and related lockdown measures had on people with disabilities. Conclusions/Implications: Findings from this study offer an important perspective – people with disabilities need to be included in larger public policy and responses to crises such as a pandemic. Fostering mutual aid and support among people with disabilities to increase their resilience in times of crisis is encouraged.
References
Bezyak J. L., Sabella, S. A., Gattis, R. H. (2017). Public transportation :An investigation of
barriers for people with disabilities. Journal of Disability Policy Studies, 28(1), 52-60.
Bezyak, J. L., Sabella, S., Hammel, J., McDonald, K., Jones, R. A., & Barton, D. (2020).
Community participation and public transportation barriers experienced by people with disabilities. Disability and Rehabilitation, 42(23), 3275-3283.
Blunt, A. (2005). Cultural geography: Cultural geographies of home. Progress in Human Geography, 29(4), 505-515.
Bougeard, C., Picarel-Blanchot, F., Schmid, R., Campbell, R., & Buitelaar, J. (2021). Prevalence of autism spectrum disorder and co-morbidities in children and adolescents: a systematic literature review. Frontiers in Psychiatry, 12, 744749. https://www.bls.gov/news.release/archives/disabl_06212016.htm
Bureau of Labor Statistics (2020, February 26). Persons with a disability: Labor force characteristics—2019. USDL-20-0339. https://www.bls.gov/news.release/archives/disabl_02262020.htm
Cabero-Almenara, J., Gutiérrez-Castillo, J. J., Palacios-Rodríguez, A., & Guillén-Gámez, F. D. (2022). Digital competence of university students with disabilities and factors that determine it. A descriptive, inferential and multivariate study. Education and Information Technologies, 1-20.
Calhoun, L. G., & Tedeschi, R. G. (2008). The paradox of struggling with trauma: Guidelines for practice and directions for research. Trauma, recovery, and growth: Positive psychological perspectives on posttraumatic stress, 325-337.
Chan, F., Tansey, T. N., Iwanaga, K., Bezyak, J., Wehman, P., Phillips, B. N., ... & Anderson, C. (2021). Company characteristics, disability inclusion practices, and employment of people with disabilities in the post COVID-19 job economy: A cross sectional survey study. Journal of Occupational Rehabilitation, 31, 463-473.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Sage Publications.
Chinn, P. L., & Kramer, M. K. (2014). Knowledge development in nursing: Theory and process. Elsevier Health Sciences.
Cho, M., & Kim, K. M. (2022). Effect of digital divide on people with disabilities during the
COVID-19 pandemic. Disability and Health Journal, 15(1), 1012-1014.
Chugani, C. D., & Houtrow, A. (2020). Effect of the COVID-19 pandemic on college
students with disabilities. American Journal of Public Health, 110(12), 1722.
Cohen, A. H. (2017). Accessibility-Related Service Failures Online: Examining Their Effect
on Avoidance Behaviors for Disabled Consumers and Their Social Networks. Drexel University.
Cornwell, E. Y., & Waite, L. J. (2009). Social disconnectedness, perceived isolation, and
health among older adults. Journal of health and social behavior, 50(1), 31-48.
Creswell, J. W., & Creswell, J. D. (2017). Research design: Qualitative, quantitative, and
mixed methods approaches. Sage Publications.
Deane, K. (2009). Shut out: The experience of people with disabilities and their families in Australia; National Disability Strategy Consultation Report. National People with Disabilities and Carer Council, Department of Families, Housing, Community Services and Indigenous Affairs.
Doody, O., & Keenan, P. M. (2021). The reported effects of the COVID-19 pandemic on
people with intellectual disability and their carers: a scoping review. Annals of Medicine, 53(1), 786-804.
Elo, S., & Kyngäs, H. (2008). The qualitative content analysis process. Journal of Advanced
Nursing, 62(1), 107-115.
Emerson, E., Stancliffe, R., Hatton, C., Llewellyn, G., King, T., Totsika, V., ... & Kavanagh, A. (2021). The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK. Journal of Public Health, 43(3), 472-478.
Fine, M., & Spencer, R. (2009). Social isolation: Development of an assessment tool for HACC services. A literature review conducted for the New South Wales Department of Disability, Ageing and Home Care (DADHC).
Findlay, R., & Cartwright, C. (2002). Social isolation and older people: A literature review: Australasian Centre on Ageing. The University of Queensland.
Friedman, C. (2022). Financial hardship experienced by people with disabilities during the
COVID-19 pandemic. Disability and Health Journal, 15(4), 101359.
Fuller, B., & García Coll, C. (2010). Learning from Latinos: contexts, families, and child development in motion. Developmental Psychology, 46(3), 559.
Gibson, B. E., Secker, B., Rolfe, D., Wagner, F., Parke, B., & Mistry, B. (2012). Disability and dignity-enabling home environments. Social Science & Medicine, 74(2), 211-219.
Gilmore, L., & Cuskelly, M. (2014). Vulnerability to loneliness in people with intellectual
disability: An explanatory model. Journal of Policy and Practice in Intellectual
Disabilities, 11(3), 192-199.
Desquenne Godfrey, G., Downes, N., & Cappe, E. (2024). A systematic review of family
functioning in families of children on the Autism Spectrum. Journal of Autism and Developmental Disorders, 54(3), 1036-1057.
Goggin G., Ellis K. (2020). Disability, communication, and life itself in the COVID-19
pandemic. Health Sociology Review, 29, 168-76. https://doi.org/10.1080/14461242.2020.1784020
Gould, K. J. (2020). COVID-19 and college students with special needs. Exceptional Parent, 50, 44-46.
Goulden, A., Kattari, S. K., Slayter, E. M., & Norris, S. E. (2023). ‘Disability is an art. It's an ingenious way to live.’: Integrating disability justice principles and critical feminisms in social work to promote inclusion and anti-ableism in professional praxis. Affilia, 38(4), 732-741.
Hamilton, L. S., & Ercikan, K. (2022). COVID-19 and US schools: Using data to understand and mitigate inequities in instruction and learning. Primary and secondary education during Covid-19: Disruptions to educational opportunity during a pandemic, 327-351.
Heinze, N., Hussain, S. F., Castle, C. L., Godier-McBard, L. R., Kempapidis, T., & Gomes, R. S. (2021). The long-term impact of the COVID-19 pandemic on loneliness in people living with disability and visual impairment. Frontiers in Public Health, 9, 738304.
International Disability Alliance (2024, December 26). Voices of People with Disabilities During the Covid19 Outbreak. https://www.internationaldisabilityalliance.org/content/voices-people-disabilities-during-covid19-outbreak.
Jansuwan, S., Christensen, K. M., & Chen, A. (2013). Assessing the transportation needs of
low-mobility individuals: Case study of a small urban community in Utah. Journal of
Urban Planning and Development, 139(2), 104-114.
Jayawickreme, E., Infurna, F. J., Alajak, K., Blackie, L. E., Chopik, W. J., Chung, J. M., ... & Zonneveld, R. (2021). Post‐traumatic growth as positive personality change: Challenges, opportunities, and recommendations. Journal of Personality, 89(1), 145-165.
Jesus, T. S., Bhattacharjya, S., Papadimitriou, C., Bogdanova, Y., Bentley, J., Arango-Lasprilla, J. C., ... & Refugee Empowerment Task Force International Networking Group of the American Congress of Rehabilitation Medicine (2021). Lockdown-related disparities experienced by people with disabilities during the first wave of the COVID-19 pandemic: Scoping review with thematic analysis. International Journal of Environmental Research and Public Health, 18(12), 6178.
Jumreornvong, O., Tabacof, L., Cortes, M., Tosto, J., Kellner, C. P., Herrera, J. E., & Putrino, D. (2020). Ensuring equity for people living with disabilities in the age of COVID-19. Disability & Society, 35(10), 1682-1687.
Khan, I., Shah, D., & Shah, S. S. (2021). COVID-19 pandemic and its positive impacts on
environment: An updated review. International Journal of Environmental Science and Technology, 18, 521-530.
Krahn, G. L., Walker, D. K., & Correa-De-Araujo, R. (2015). Persons with disabilities as an
unrecognized health disparity population. American Journal of Public Health, 105(S2), S198-S206.
Krippendorff, K. (2004). Reliability in content analysis: Some common misconceptions and
recommendations. Human Communication Research, 30(3), 411-433.
Lakey, B., & Cohen, S. (2000). Social support and theory. Social support measurement and intervention: A guide for health and social scientists, 29, 29-49.
Larose, S., Bureau, J. S., Cellard, C., Janosz, M., Beaulieu, C., Châteauvert, G. B., & Girard-Lamontagne, A. (2024). How did college students with and without disabilities experience the first wave of the COVID-19 pandemic? A stress and coping perspective. Research in Higher Education, 65(2), 209-229.
Lebrasseur, A., Fortin-Bedard, N., Lettre, J., Bussieres, E-L, Best, K., Boucher, N., Hotton, M., Beaulieu-Bonneau, S.,
Mercier, C., Lamontagne, M-E., & Routhier, F. (2021). Impact of COVID-19 on people with disabilities: A rapid review. Disability and Health Journal, 14(1).
Lim, S., Bae, J. H., Kwon, H. S., & Nauck, M. A. (2021). COVID-19 and diabetes mellitus: from pathophysiology to clinical management. Nature Reviews Endocrinology, 17(1), 11-30.
Lindsay, R. K., Wilson, J. J., Trott, M., Olanrewaju, O., Tully, M. A., López-Sánchez, G. F., ... & Smith, L. (2021). What are the recommendations for returning athletes who have experienced long term COVID-19 symptoms? Annals of
Medicine, 53(1), 1935-1944.
Linz, S. (2013). Facilitating Social Integration for People with Severe Mental Illness.
Livermore, G. A., & Honeycutt, T. C. (2015). Employment and economic well-being of
people with and without disabilities before and after the great recession. Journal of Disability Policy Studies, 26(2), 70-79.
Lund, E. M., & Ayers, K. B. (2020). Raising awareness of disabled lives and health care
rationing during the COVID-19 pandemic. Psychological Trauma: Theory, Research, Practice, and Policy, 12(S1), S210.
Lund, E. M., Forber-Pratt, A. J., Wilson, C., & Mona, L. R. (2020). The COVID-19 pandemic, stress, and trauma in the disability community: A call to action. Rehabilitation Psychology, 65(4), 313–322. https://doi.org/10.1037/rep0000368
Macdonald, S. J., Deacon, L., Nixon, J., Akintola, A., Gillingham, A., Kent, J., ... &
Highmore, L. (2018). ‘The invisible enemy’: disability, loneliness and
isolation. Disability & Society, 33(7), 1138-1159.
Maroto, M. L., Pettinicchio, D., & Lukk, M. (2021). Working differently or not at all: COVID-19’s effects on employment among people with disabilities and chronic health conditions. Sociological Perspectives, 64(5), 876-897.
McConkey, R., Keogh, F., Bunting, B., Garcia Iriarte, E., & Watson, S. F. (2016). Relocating
people with intellectual disability to new accommodation and support settings: Contrasts between personalized arrangements and group home placements. Journal of Intellectual Disabilities, 20(2), 109-120.
Mingus, M. (2016). Pods and podmapping worksheet. Bay Area Transformative Justice
Collective. https://batjc.wordpress.com/resources/pods-and-pod-mapping-worksheet/
Mithen, J., Aitken, Z., Ziersch, A., & Kavanagh, A. M. (2015). Inequalities in social capital and health between people with and without disabilities. Social Science & Medicine, 126, 26-35.
Murray, V. L. (2018). The moving landscapes of learning disability. [Doctoral dissertation,
University of Glasgow].
National Disability Institute (2019). National Disability Institute Reports.
https://www.nationaldisabilityinstitute.org/reports/
Ne'eman, A., & Maestas, N. (2023). How has COVID-19 impacted disability employment?
Disability and Health Journal, 16(2), 101429.
Negrini, S., Grabljevec, K., Boldrini, P., Kiekens, C., Moslavac, S., Zampolini, M., & Christodoulou, N. (2020). Up to 2.2 million people experiencing disability suffer collateral damage each day of COVID-19 lockdown in Europe. European Journal of Physical and Rehabilitation Medicine, 56(3).
Okoro, O., Vosen, E. C., Allen, K., Kennedy, J., Roberts, R., & Aremu, T. (2022). COVID-19 impact on mental health, healthcare access and social wellbeing–a black community needs assessment. International Journal for Equity in Health, 21(1), 137.
Oosterhoff, B., Palmer, C. A., Wilson, J., & Shook, N. (2020). Adolescents' motivations to engage in social distancing during the COVID-19 pandemic: Associations with mental and social health. Journal of Adolescent Health, 67(2), 179-185.
Oosterhoff, B., & Palmer, C. A. (2020). Attitudes and psychological factors associated with news monitoring, social distancing, disinfecting, and hoarding behaviors among US adolescents during the coronavirus disease 2019 pandemic. JAMA Pediatrics, 174(12), 1184-1190.
Pachamama Alliance. (2021). Social responsibility and ethics. Retrieved on March 14, 2024. https://www.pachamama.org/social-justice/social-responsibility-and-ethics
Park, J., & Chowdhury, S. (2018). Investigating the barriers in a typical journey by public
transport users with disabilities. Journal of Transport & Health, 10, 361-368.
Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press. https://arsenalpulp.com/Books/C/Care-Work
Pulrang, A. (2020, April 14). The disability community fights deadly discrimination amid the
COVID-19 Pandemic. Forbes. https://www.forbes.com/sites/andrewpulrang/ 2020/04/14/the-disability-community-fights-deadly-discrimination-amid-the-covid-19-pandemic/
Rydzewska, E., Dunn, K., & Cooper, S. A. (2021). Umbrella systematic review of systematic
reviews and meta-analyses on comorbid physical conditions in people with autism spectrum disorder. The British Journal of Psychiatry, 218(1), 10-19.
Ryerson, A. B., Rice, C. E., Hung, M., et al. (2021). Disparities in COVID-19 vaccination status, intent, and perceived access for noninstitutionalized adults, by disability status—National Immunization Survey Adult COVID Module, United States, May 30–June 26, 2021. Morbidity and Mortality Weekly Report, 70, 1365–1371. http://dx.doi.org/10.15585/mmwr.mm7039a2
Sabella, S. A., & Bezyak, J. L. (2019). Barriers to public transportation and employment: A
national survey of individuals with disabilities. Journal of Applied Rehabilitation Counseling, 50(3), 174-185.
Schur, L., Rodgers, Y. V. D. M., & Kruse, D. L. (2021). COVID-19 and employment losses for workers with disabilities: An intersectional approach. De Gruyter handbook of disability and management. Berlin: Walter de Gruyter GmbH, 83-104.
Scott S. & Aquino K. (2020). COVID-19 transitions: Higher education professionals’
perspectives on access barriers, services, and solutions for students with disabilities. Association on Higher Education and Disability. Accessed on October 4, 2023. https://higherlogicdownload.s3.amazonaws.com/AHEAD/38b602f4-ec53-451c-9be0- 5c0bf5d27c0a/UploadedImages/COVID- 19_/Documents/AHEAD_COVID_Survey_Report.pdf.
Scully, J. L. (2020). Disability, disablism, and COVID-19 pandemic triage. Journal of Bioethical Inquiry, 17(4), 601-605.
Sidener, E. A. (2019). Resilience and post-traumatic growth in parents of children with special needs. OSR Journal of Student Research, 5(1), 350.
Singh, S. (2020). Disability ethics in the coronavirus crisis. Journal of Family Medicine and
Primary Care. 9, 2167-2171.
Sins Invalid (2018). 10 Principles of Disability Justice.
https://sinsinvalid.org/10-principles-of-disability-justice/.
Splevins, K., Cohen, K., Bowley, J., & Joseph, S. (2010). Theories of posttraumatic growth:
Cross-cultural perspectives. Journal of Loss and Trauma, 15(3), 259-277.
Stemler, S. (2001). An Introduction to Content Analysis. ERIC Digest.
Sutherland, D., Flynn, S., Kurzeja, O., Griffin, J., & Hastings, R. (2023). Family‐systems
interventions for families of people with an intellectual disability or who are autistic: A systematic review. Journal of Intellectual Disability Research.
Taylor H., Krane D., & Orkis, K. (2010). The ADA, 20 years later. A Kessler foundation and
national organization on disability report. Harris Interactive.
Thoits, P. A. (1985). Social support and psychological well-being: Theoretical possibilities.
In Social support: Theory, research and applications (pp. 51-72). Springer Netherlands.
Thoits, P. A. (2021). “We know what they’re going through”: Social support from similar
versus significant others. The Sociological Quarterly, 62(4), 643-664.
Turk, M. A., & McDermott, S. (2020). The COVID-19 pandemic and people with disability. Disability and Health Journal, 13(3), 100944.
Umucu, E., & Lee, B. (2020). Examining the impact of COVID-19 on stress and coping
strategies in individuals with disabilities and chronic conditions. Rehabilitation
Psychology, 65(3), 193.
U.S. Department of Education. Office for Civil Rights (2020). Data on equal access to
education. https://civilrightsdata.ed.gov/
Walsh, F. (2020). Loss and resilience in the time of COVID‐19: Meaning making, hope, and
transcendence. Family Process, 59(3), 898-911.
Wang, J., Lloyd-Evans, B., Giacco, D., Forsyth, R., Nebo, C., Mann, F., & Johnson, S. (2017). Social isolation in mental health: a conceptual and methodological review. Social Psychiatry and Psychiatric Epidemiology, 52, 1451-1461.
Wang, K., Manning III, R. B., Bogart, K. R., Adler, J. M., Nario-Redmond, M. R., Ostrove, J. M., & Lowe, S. R. (2022). Predicting depression and anxiety among adults with disabilities during the COVID-19 pandemic. Rehabilitation Psychology, 67(2), 179.
Wehmeyer, M. L., & Bolding, N. (2001). Enhanced self‐determination of adults with intellectual disability as an outcome of moving to community‐based work or living environments. Journal of Intellectual Disability Research, 45(5), 371-383.
White, D. B., Angus, D. C., Shields, A. M., Buddadhumaruk, P., Pidro, C., Paner, C., ... & Arnold, R. M. (2018). A randomized trial of a family-support intervention in intensive care units. New England Journal of Medicine, 378(25), 2365-2375.
World Health Organization (2023). WHO Policy on Disability. https://www.who.int/publications/i/item/9789240020627
Young, J., & Donovan, W. (2020). Shifting to online learning in the COVID-19 spring. [Policy brief]. Pioneer Institute for Public Policy Research.