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Abstract

Background: The Coronavirus Disease-2019 (COVID-19) pandemic has taken a disproportionate toll on people with intellectual and developmental disabilities (I/DD) as well as their family caregivers. This is especially true for older family caregivers, many of whom assume dual or compound caregiving roles, and provide care as they undergo their own aging experiences. This research brief presents findings from family caregivers of adults with I/DD to better understand how the COVID-19 pandemic has affected their lives. Method: Thirty family caregivers from across the state participated in a one-hour special COVID-19 virtual discussion group. All participant identifiers were deleted from a session transcript that was examined by two independent researchers to identify common themes using content analysis. The themes were grouped into the area of challenges and unexpected positive outcomes. Results: The most common challenge identified by the participants was limited access to medical services such as cancellation of appointments and obtaining medications. The quick transition to telehealth without adequate training for users or clinicians was also seen as a challenge. The increased use of technology also raised challenges in other areas of life such as education and employment. These challenges were related to inadequate equipment, internet service, having to share the limited equipment, and insufficient experience using technology. Caregivers also reported feeling socially isolated including not being able to leave their homes or see family or friends. They also described frustration of being together all the time. Caregivers also reported several unexpected positive consequences (‘silver linings’). A common theme was that the pandemic slowed life’s pace allowing for more flexibility, more time with their families, and gratitude for everyday things. While technology was discussed as a challenge, it was also mentioned as a positive in that it allowed for social connectedness. Several creative uses of Zoom to connect with family and friends were discussed including virtual game nights, dance parties, cocktail parties, and happy hours. Some shared that their family members were able to make friends more easily online where they had difficulties doing so in-person. Helpful strategies for coping with the quarantine such as physical activity and hobbies were also shared. Conclusion: The duration of COVID-19 and its ramifications are unknown. Many challenges experienced by family caregivers are not new, rather they are intensified due to the pandemic. Family caregivers indicated challenges and needs related to accessing medical services and use of telehealth. Strategies that build on family caregivers’ concerns and strengths are needed to offset the burden posed by COVID‑19. Family Support Navigators (FSNs) and other supportive individuals can play an integral role in helping family caregivers during these unprecedented times.

Plain Language Summary

The COVID-19 pandemic made life difficult for families of adults with disabilities. We had a group discussion of 30 family members on the pros and cons of staying at home. Family members said that it was hard to get medicine and see their doctor. Many struggled to use the internet to talk to people. They did not like to stay home all the time. They felt alone because they could not see their family and friends. There were also some good changes. They liked staying connected with family and friends online. They also liked that the slow pace of life was more relaxed. Many of these problems are not new but have gotten worse because of the pandemic. Understanding the pros and cons of staying at home can help us decrease the burden on families.

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