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Family Caregiving During the COVID-19 Pandemic

Sharon Milberger, Christina Marsack-Topelewski, Elizabeth Janks, Preethy S Samuel
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
more » ... ic 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 w [...]
doi:10.26077/64db-5d81 fatcat:asqqwgabxvbgnlsshm2p34pqfu