How the Reeve Foundation Helped During the COVID-19 Pandemic

When COVID-19 quarantine and social isolation regulations were implemented, many people were left alone, unsure, and scared. Many questions needed to be answered about the virus itself, medical care, social contact, and whom to turn to for answers. The National Paralysis Resource Center’s (NPRC’s) Peer & Family Support Program staff and Information Specialists were there for those in need. The NPRC offered various COVID-19-related supports including new educational materials, access to a rehab nurse, and a new type of grant devoted solely to COVID-19.

Managing a New Normal

People are social creatures. Feeling a part of something or interacting with a friend or loved one can boost self-confidence and decrease anxiety and depression. Being around or having contact with others is essential to mental and physical health. When social isolation regulations were implemented, the lack of contact with others increased mental health issues.

The impact of social isolation during the first few months of the COVID-19 pandemic led to increased emotional and social cognition issues, reduced contact with friends, family members, and social situations. Mental health disorders such as depression and anxiety increase during social isolation.

Furthermore, the onset of COVID-19 created a vacuum for those with paralysis. They or their caregivers were unsure of or experienced anxiety about what to do about their medical and social care needs. In addition, caregivers and people with SCI wondered how to receive the vital care needed while trying to stay safe from being infected by COVID-19.

The Peer & Family Support Program and Information Specialist team members were there for anyone with questions. The team members understood that learning to follow safety precautions while receiving home healthcare can induce anxiety and concern. Since home health care companies provide in-home care, knowing what to expect and how to talk with the home health care providers about their feelings was an essential step in easing concerns or anxiety about receiving their care.

When the COVID-19 pandemic started, the Peer & Family Support Program was able to create a virtual support group offering to three types of people: caregivers, those who live with paraplegia, and those who live with quadriplegia. To participate in a free virtual support group, please see: https://www.christopherreeve.org/get-support/reeve-foundation-virtual-support-group.

In-home Care

Everyone deserves to feel safe in their home. That’s why the Peer & Family Support Program staff and Information Specialists provided support and guidance on what supplies they may need for their in-home care. Since many clients obtain medical care from personal care assistants (PCAs), it was vital to learn how to talk with their PCA about health safety protocols. The NPRC staff guided their clients to feel comfortable asking for information about how and what the home healthcare company and the PCAs are doing to provide care for their clients safely.

Through the guidance and support of NPRC staff, clients were also confident to set up sterilization stations in their homes and have the medical supplies they may need available. These steps allowed clients to take control of their care. Also, clients could take steps to ensure their health, safety, and mental well-being were protected.

Hospital and Rehab

Loneliness creates considerable harm to people’s mental and physical health. People hospitalized or receiving care at a rehab center were affected by COVID-19’s quarantine or social isolation rules.

COVID-19’s quarantine and social isolation regulations included a no-visitors rule in hospitals and rehab centers throughout the United States. As a result, people (even those with new spinal cord injuries) could no longer have the support or comfort of their loved ones while they were receiving care in a hospital or rehab center. Those recently diagnosed with a spinal cord injury faced learning about their treatment and care without a loved one to help them take in the information given by their medical team. The lack of coordinated care decisions and learning how to do things when they or a loved one is at home created stress and anxiety. The Peer & Family Support Program staff and Information Specialist team members helped clients and caregivers understand and learn how to care for their medical needs.

COVID-19 Information

Another challenge was supporting and guiding those with paralysis during COVID-19 social isolation rules. Some had sustained and lived with SCI for an extended period. Some thought COVID-19 wasn’t a significant threat. Peer & Family Support Program staff and Information Specialists spoke with them about the risk factors of contracting COVID-19. The team members discussed how health issues such as diabetes, weight, and respiratory problems place people at a higher risk of contracting COVID-19. Those with pre-existing high-risk conditions, not just high-level quadriplegics or those on ventilators, were at risk.

The team members advised clients to learn more about the health and other risks associated with COVID-19. Clients were also strongly advised to talk with their doctor about their risk of being infected because of their level of paralysis.

The Christopher & Dana Reeve Foundation strives to provide the best care, support, and information for their clients. Throughout the COVID-19 pandemic, team members have dedicated themselves to remaining up-to-date and responding quickly to clients’ concerns.

New Resources Created

Recognizing the need for educational materials on COVID, the Information Services staff created two new fact sheets on COVID-19 and vaccines for COVID-19. These were translated into nine languages other than English so that those who are not proficient in English were able to educate themselves on COVID-19 topics.

Nurse Linda, a rehabilitation nurse, offered a webinar on COVID where attendees could ask her any COVID-related question. Numerous blogs were written by Nurse Linda as well as others on various topics related to COVID-19.