Reflections on Transitioning a Traumatic Brain Injury Support Group Online During the COVID-19 Pandemic.

Introduction

Traumatic brain injury (TBI), which ranges from mild concussions to severely damaged brain structures, is one of the leading causes of death and disability in the United States.[1] TBI survivors often experience physical limitations as well as cognitive, emotional, and behavioral issues that can impede recovery.[1,2] These obstacles may impact daily functioning in areas such as relationships or return to work or school. The diverse array of symptoms presents many challenges to survivors[2] and their loved ones, and additional support can be crucial for recovery after TBI.

Before the COVID-19 pandemic, research staff at Pennsylvania Presbyterian Medical Center (PPMC) successfully ran an in-person support group for TBI survivors and their caregivers. This success was established based on member feedback and retention (see Fig 1). Over time, comments from the group demonstrated that membership instilled feelings of hope, increased motivation for recovery, and helped develop tangible coping strategies. Some benefits extended to caregivers as well, particularly when dealing with adjustment, grief, coping, and acceptance. Evidently, both peer support and effective facilitation can provide essential insights and help improve quality of life in TBI survivors and their loved ones.

FIGURE 1

Average attendance numbers excluding Penn support staff and guest speakers.

The onset of the pandemic necessitated moving to a virtual format to continue supporting members. Facilitators questioned whether the positive effects of attending support group would translate online. Although some literature highlighted the necessity of virtual support formats,[3] few have examined changing formats for an existing group with various disabilities. It was also unclear how members would respond to an online environment or the capacity to support members from afar. Ultimately, facilitators determined that continuing support group virtually would provide substantial peer and community support during a particularly difficult time.

Penn's Support Group History, Structure, and Goals

The PPMC's Traumatic Brain Injury Support Group originated in 2017 with oversight from a neuroscience nurse practitioner. It was later facilitated by research coordinators from the Clinical TBI Research Initiative, who held master's degrees in clinical psychology and counseling. The focus was to provide peer support and education to TBI patients and their caregivers. A space was developed to exchange strategies and resources and to also share experiences with the goal of improving members' quality of life. Meetings have helped people in times of isolation and adversity by developing member resiliency and a sense of community. When groups ran in person, members met once a month at PPMC. Parking and food were provided, and professionals in TBI-related fields came to present on a variety of topics (see Table 1). Ultimately, the growing group, member feedback, and referrals from various external professionals showed that social support delivered through the community-based support program could be key to maximizing recovery post TBI.

TABLE 1

Support Group Guest Speakers and Topics During Online Meetings

Month	Speaker(s) Information	Topic
Apr-20	N/A, discussion based	COVID-19 anxiety and coping strategies
May-20	MS, Doctoral Candidate, PsyD, Loyola University Maryland, and MS, LGPC	Mindfulness meditation exercises
Jun-20	MS, CCC-SLP, speech language pathologist at Good Shepherd Penn Partners Rehabilitation Program	Attention and memory strategies
Jul-20	N/A, discussion based	Overcoming barriers, ongoing difficulties, emotional support, and encouragement
Aug-20	MD, assistant professor of clinical neurology and headache specialist at the University of Pennsylvania	Headache management post TBI
Sep-20	DO, preventative medicine specialist	Promoting and maintaining a healthy lifestyle
Oct-20	MD, neurosurgery specialist at Penn Presbyterian Medical Center	Brain recovery and treatment after TBI, Q&A
Nov-20	MSOD, associate and executive director of the Office of Affirmative Action and Equal Opportunities Program, University of Pennsylvania	Americans with Disabilities Act, ADA requests at UPenn during COVID-19
Jan-21	MMT, MT-BC, certified music therapist and director of “A Place to Be” program	Role of music therapy in TBI recovery featuring survivor story
Feb-21	VOCA victim advocate and program manager at Pennsylvania Health Law Project	Accessing healthcare coverage services, Victims of Crime Act program
Mar-21	PhD, principal investigators of TBI research projects at Villanova University	Study opportunities, in-home rehabilitation services, current TBI research findings

Abbreviation: TBI, traumatic brain injury; N/A, not applicable.

COVID-19 Transition

The prevalence of the severe acute respiratory syndrome coronavirus 2 at the beginning of March 2020 necessitated policy changes and restrictions at the University of Pennsylvania and medicine systems to protect patients' health. This coincided with governor mandates in Pennsylvania to enforce social distancing. The Brain Injury Association of Pennsylvania called for a meeting of support group leaders, which helped to provide guidance and frameworks for proceeding safely and effectively online.

In April of 2020, the PPMC's group began holding monthly support group meetings virtually and was able to maintain the preexisting in-person structure. Group rules such as confidentiality and mindfulness of sharing time were pronounced at the beginning, and instructions regarding videoconferencing and technical support were provided. Meetings were not recorded to protect member privacy. To accommodate preferences, members had the option to use video or voice only. In addition, members were muted by the moderator during the speaker presentation and asked to unmute themselves when they had a question or comment. Each month, the support group met and often featured a guest speaker who presented for the first half of the group to disseminate applicable information and resources (see Table 1). Time was also provided for the speaker to answer questions, and transition to relevant discussion and check-ins among new and old members. After meetings, a facilitator emailed resources, announcements, TBI-related events, presentations, and meeting recaps to the member listserv so absent members could receive materials.

Strengths

The main benefits of using a video platform during the pandemic are increased accessibility and ability to continue to receive support. Another advantage has been the capability to be in a more controlled environment, often with less stimulation and distractions. When in person, some members' specific needs for their lighting or noise sensitivities could not always be met in a shared space. While at home, members could adjust their preferences by turning off video when they found it distracting, phoning in, adjusting their screen brightness, and so forth. Other obstacles that were present in person but eliminated virtually were travel time and cost, as well as physical difficulties or fear of using the stairs or elevator. Similarly, costs to run the support group in person such as ordering materials, food, and parking payments were removed. Distance was no longer a barrier, which also made it possible for guest speakers outside the Philadelphia area to present. With the online format, these logistical issues were eliminated.

A concern was that the online format would alter the quality of discussion. However, there has been a notably greater ease in which discussion can be facilitated. Previously, members would talk over one another or share for extended periods, limiting others in participating. Through videoconferencing, members can use a function to “raise” a hand to indicate they would like to speak. Questions and comments can be shared in the chat, which has been a convenient channel for members to share resources with one another. As a facilitator, it has been easier to redirect people to the discussion and stay on topic. It has also provided a means for people to communicate who are more comfortable with sharing via chat than asking verbally, which is not an option in person.

Overall, the group can be facilitated more efficiently virtually. One facilitator can start the meeting early and assist member setup, another can serve as a backup moderator for technical difficulties and handle chat issues. This extra support has helped members with varying abilities adjust. Finally, when in person, groups would often run overtime with side discussions and requests to use the conference room longer for socialization. This has not been the case with virtual meetings, which have been timelier and more organized. Discussion time has not been eliminated but has been more focused during the online format.

Barriers

Regarding barriers to the virtual format, there has been a learning curve for some TBI patients. One member is waiting to rejoin the group in person because of their discomfort with using the platform and preference for in-person conversation. Similarly, some members across all ages found it difficult to engage with a screen instead of their physical environment. Mental fatigue can occur for those trying to follow along to an online presentation. A few members have mentioned “Zoom fatigue” from not only work-related meetings but also using videoconferencing for therapy appointments and/or family interactions. Other members may have a lack of resources such as a suitable phone or laptop, or limited Internet access.

Implications for Nurses

Nurses have a pivotal role in community-based care.[4] Community-based interventions promote support and advance recovery in the neuroscience patient.[4] A lack of social support was identified as a barrier to recovery for older adults in the year after TBI.[5] Results from a multiple-case study using data from a larger parent study recommended that nurses integrate social support into the assessment of the older adult after TBI.[5] The COVID-19 pandemic was associated with social isolation for many people, including those recovering from injuries. The integration of support groups during the recovery phase for TBI patients provides imperative social support for TBI patients and their significant others.[5]

Nursing ingenuity and nursing innovations were propelled during the COVID-19 pandemic and continue to expand as the pandemic lingers.[6,7] The successful transition of this TBI support group to a virtual format allowed the facilitators to continue to provide community resources and social support to this unique neuroscience patient population at a vital time. Neuroscience nurses and research coordinators fostered improved recovery for TBI patients through community resources delivered in a virtual format.

Future Directions

It is unknown when in-person gatherings will return to “normal.” Perhaps when events return to in-person, a hybrid option will be available for participants that combines virtual and in-person attendance, meeting the needs of all members. Eighteen months into the COVID-19 pandemic, the support group facilitators are proud of the strength, flexibility, and resilience of the support group members who have adjusted to a virtual world. Both facilitators and members have learned from the experience and continue to grow together to provide a safe space for knowledge sharing and support for one another. New support groups could continue to build upon the strengths of transitioning to virtual meetings to improve support and accessibility to TBI survivors, caregivers, and other groups in need of resources.