How the COVID-19 Pandemic Affected Mental Health
The unprecedented pandemic caused by COVID-19 created a vacuum for those with paralysis and their caregivers. The inability to visit with others or receive information in an appointment or social setting left many isolated. Fortunately, the Christopher & Dana Reeve Foundation responded quickly to the needs of the paralysis community.
Vanderbilt University
A study was conducted in 2023 by Vanderbilt University in collaboration with the Reeve Foundation. The survey focused on the experiences of those in the paralysis community during the COVID-19 pandemic. The team designed the survey to learn about the mental health experiences of the paralysis community and the use of resources provided by the Reeve Foundation.
Participants in the survey represented persons with disabilities (PWD), persons with paralysis (PWP), and people without disabilities or paralysis – family, friends, caregivers, health professionals, and Reeve Foundation supporters (FS). The findings of the survey were encouraging.
Mental Health
Throughout the pandemic, especially in the beginning stage, there was an increase in reports of mental health issues such as depression or anxiety. Reeve Foundation supporters’ survey responses showed they had a lower level of support than the PWD group. Researchers believe that this occurred because the PWP group had the support of caregivers. The finding is encouraging because people in the PWP and PWD groups were able to access and use various forms of support to help them during the COVID-19 pandemic.
Pandemic-Related Challenges
When asked about the biggest challenges PWD and FS groups faced during the pandemic, the groups had similar responses. Fears of getting COVID-19 or infecting others, boredom, frustration, social isolation, COVID-19 regulations (masks, vaccines), and anxiety were common answers.
The Reeve Foundation Programs
When asked which programs the participants engaged with since the beginning of the pandemic (March 2020), four areas were identified the most. Many people in the PWD and FS groups cited their use of:
Webinars – the webinars provide education and a connection with others living with paralysis.
Communications - newsletter, social influencers, and bloggers. These are convenient ways to stay up to date with the latest news and work the Reeve Foundation is engaging in.
Peer and Family Support Program – the peer mentoring program connects those seeking help with peer mentors. These mentors are there to answer questions, support, and share their experiences and knowledge. Those living with paralysis or their loved ones/caregivers are welcome to seek guidance from a peer mentor.
Advocacy –The advocacy program helps you connect with policymakers through email and social media and allows one to be a voice for change.
When comparing groups on the areas that they were engaged within the Reeve Foundation, PWD was significantly more likely than FS to be engaged with webinars, the Peer & Family Support Program, Information Specialists, Advocacy, Communications, in-person or virtual conferences. FS were more likely than PWD to engage with Team Reeve, the Reeve Summit, and the Quality of Life Grants Program.
Foundation supporters had a higher participation rate with:
Team Reeve – become one of the many who dedicate their time to helping the Reeve Foundation provide support, education, and comprehensive care for those living with a spinal cord injury.
Reeve Summit – the Reeve Summit brings together community members, health professionals, caregivers, and thought leaders. The aim of the summit is to foster health promotion, innovation, collaboration, and independence.
Quality of Life Grants Program – the Quality of Life Grants Program provides funding to agencies that provide programs that increase the well-being of those with paralysis and their loved ones.
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Conclusion
It was most useful to the Reeve Foundation to hear from users of its programs during the pandemic as to how the programs supported them in this difficult time. Under the question “Why was each area the most beneficial program/service the Reeve Foundation offered to you during the pandemic?” some of the answers included:
Information Specialists--“When I had a specific problem, I needed help with right away, it was so reassuring that someone would contact me with answers and also direct me to references and resources. Big help.”
Webinars--“A way to connect with peers across the country and learn and share experiences and information.”
Communications--“It connected me when we could not physically be together and made me feel like I was/am doing something constructive.”
Peer and Family Support Program--“I could still talk with peers on the phone or computer. It helped me to stay connected.”
To review the whole survey, click here.
The programs offered by the Reeve Foundation provided the resources and engagement needed by persons with disabilities and Foundation supporters during the COVID-19 pandemic. While the different groups found different programs more helpful than others, the groups actively engaged with programs that met their mental and emotional needs. As people continue to cope with COVID-19’s effects, the Reeve Foundation remains dedicated to providing programs and resources to the paralysis community.
Christina Sisti, DPS, MPH, MS is a bioethicist and health care policy advocate. She works to create awareness and improve health care policy for those with long-term health issues.