Research Snapshot: Despite facing numerous challenges, people with intellectual and developmental disabilities show resilience during pandemic
What you need to know
Researchers interviewed nine people with intellectual or developmental disabilities about their experiences during the COVID-19 pandemic. Responses centered around three main themes:
- The pandemic had impacted participants’ daily life and well-being, but many had developed strategies to help them cope. They expressed a need for more accessible and easy-to-read information, as well as financial supports.
- They felt a need for more connection to family, friends, peers and the community, but many had found ways to connect virtually for support and socialization.
- They wanted more mental health supports that were tailored to their needs. They identified virtual technology as a critical tool in accessing care.
What is this research about?
The COVID-19 pandemic has significantly impacted people all across the world. It has been especially hard on marginalized groups, such as people with intellectual and developmental disabilities (IDDs) like Down syndrome or autism.
For people with IDDs, stressors include the abrupt stop to daily routines and regular contact with friends and family, restricted availability of health services and paid support, and financial difficulties. These stressors are compounded by the challenges people with IDDs face in understanding infection risks and public health restrictions.
While research has examined how to support the well-being of people with IDDs during the pandemic, much of it has focused on the perspectives of family members. This project looked at the impact of COVID-19 from the lived experience of people with IDDs.
What did the researchers do?
Nine adults with IDDs, between 29 and 42 years of age, participated in the study. All participants had attended at least one virtual program, offered at a tertiary care hospital, to support their well-being during the pandemic. One member of the study team conducted virtual, semi-structured interviews using a flexible interview guide that allowed the interviewer to explore new and emerging topics.
Interviews were recorded and transcribed verbatim. The research team analyzed the transcripts using an inductive thematic analysis approach, where they allowed the data to determine the themes.
What did the researchers find?
The analysis showed that the COVID-19 pandemic and related public health measures had a significant impact on participants’ well-being and their need for mental health supports. The researchers identified three main themes.
Impact of the pandemic on daily life and well-being
Participants said the flood of information about COVID-19 and public health measures was overwhelming, stressful and frustrating. They were worried about catching and spreading the virus, or dying from it, but also found it difficult to adapt to pandemic restrictions.
Participants indicated a need for information about COVID-19 that was easy to access and understand. Many found virtual support groups a good source of information for navigating pandemic rules and restrictions.
Financial hardships were mentioned by several participants as a significant stressor, indicating not having enough money for necessities such as food, rent and medication.
Participants also described different coping strategies they had used, such as going for walks, journaling, engaging in mindfulness/meditation and reading. Some said they attended virtual physical activity or social groups to stay busy and connected.
Need for connection
Participants said they felt disconnected from their friends, family, peers and the broader community during the pandemic. Fear of COVID-19, physical distancing measures and being overwhelmed with information all had negative effects on their mental health. This was especially so for those who lived alone.
Participants mentioned using several strategies to connect with friends, such as chatting online and on the phone to socialize, discuss daily life experiences and share ideas for managing their mental health.
Availability and accessibility of mental health supports
Participants said there was a significant change to the mental health supports they were receiving pre-pandemic. Many of these had moved to virtual delivery or no longer existed.
All participants said they would like to have more mental health supports, such as visits with mental health care providers, psychoeducational groups and wellness activities. While participants identified technology as a critical tool for access to virtual care, some did not have the money to buy the necessary electronic devices.
The responses highlighted a need for mental health care that is tailored to their needs and that respects their autonomy and independence. Several participants described situations where they felt either dismissed, misunderstood or treated unfairly by a health care professional during the pandemic.
Limitations of the research
The researchers pointed out several limitations of their study. The study only included participants who had Internet access and could access the virtual interview platform. None were living in residential care settings or precarious housing, such as shelters.
The interviews did not include the perspectives of people with more severe disabilities, who might not have been able to participate in independent interviews. In addition, the interviews were done with residents of only one region of Canada and in the early months of the pandemic.
How can you use this research?
This research would be useful to program and policy planners looking to develop and implement programs, services and supports for people with IDDs during the COVID-19 pandemic.
Resources that may be helpful
For more information and resources, please visit the Health Care Access Research and Developmental Disabilities (H-CARDD) COVID webpage.
The COVID-19 self-help booklet series may also be helpful. It includes a how-to guide for each booklet, which can be used by a caregiver or support person to facilitate the use of the booklet. These self-help booklets work through topics including anxiety, feeling down, sleep, problem-solving and being active.
About the researchers
This project was led by researchers at the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health. Team members include Johanna K. Lake, Patrick Jachyra, Tiziana Volpe, Yona Lunsky, Carly Magnacca, Amanda Marcinkiewicz, and Yani Hamdani.