Going Virtual: Adapting an Institutional Annual Bereavement Event During the COVID-19 Pandemic

Our institution’s annual bereaved family event was modified to a virtual format during the COVID-19 pandemic. While necessary to comply with physical distancing directives, the transition also provided greater accessibility for families. Virtual events were feasible and appreciated by attendees. Future hybrid bereavement events should be considered to allow families more flexibility and accessibility.

T he death of a child is devastating and can profoundly affect parental health. 1 Health care providers and affiliated health care institutions play an important role in parental grief and bereavement. 2,3 Consistent, interdisciplinary support offered by an institutional bereavement program is a psychosocial standard in pediatric oncology. [4][5][6] In addition, bereaved parents have also described bereavement care as an institutional responsibility, noting that efforts of health care providers to remember a deceased child (eg, memorial services) are both expected and greatly appreciated by families. 6 Bereavement services may improve the coping and personal growth of parental caregivers, especially those who experience more complex mourning. 7 Memorial events allow bereaved families to reconnect with health care staff, participate in activities to honor and remember their lost loved ones, and have an opportunity to meet others who have experienced a similar loss. Opportunities for social connection may help to "normalize" the overwhelming grief of a child's death while validating the unique nature of each family's experience.
The COVID-19 pandemic has both affected the bereavement experience of parents after the death of their child and challenged the medical community's ability to support grieving families. 8,9 The pandemic has acted as a catalyst to advance many existing telemedicine programs to provide clinical care. 10 However, little detail has been reported on how the pandemic has affected specific components of pediatric bereavement events, including institution-based bereavement events. 11 Here, we share our experiences with adapting an on-site, in-person bereavement event to a virtual format, including the advantages and challenges of hosting such an event virtually. We describe the remembrance event in detail, including experiences transitioning such an emotionally charged event to a virtual platform. We believe these data may support other institutions in developing and delivering their own virtual or hybrid bereavement events.
St. Jude Children's Research Hospital and the "Day of Remembrance" Event St. Jude Children's Research Hospital (SJCRH) is a nonprofit, pediatric referral center in Memphis, Tennessee, that cares for children with mostly oncologic, hematologic, and neurologic conditions. SJCRH draws most of its patients from an 8-state area comprising Tennessee, Mississippi, Illinois, Louisiana, Arkansas, Missouri, Kentucky, and Alabama. All pediatric patients with cancer from the catchment area who are referred by physicians are accepted for treatment; acceptance of patients from other areas, including internationally, depends on protocol eligibility. Demographic factors, insurance status, and ability to pay are never considered. All costs of treatment beyond those reimbursed by third-party payers are absorbed by the hospital.
SJCRH has hosted an annual Day of Remembrance event since 1999 that allows families whose child died in the previous 5-6 years to return to the institution. When provided inperson, the 2-day event began with an opportunity to meet other families and create/share legacy boards (ie, large bulletin boards, decorated by families, that include pictures and mementos to help facilitate discussion and shared stories of their children). Later, staff were invited to view the legacy boards, connect with the families, and share memories of the children. The second day of the in-person event began with a family panel discussion, moderated by a bereaved parent, that explored caregivers' grief experiences including key topics such as healing, hope, and how grief affects you. In the afternoon, a "Celebration of Remembrance" occurred, which included prerecorded and live presentations, a photo slideshow of children, and video of staff reflections. Ongoing activities for siblings were also planned for both days, including psychosocial staff as moderators to facilitate icebreakers and therapeutic activities with siblings. The event concluded with a symbolic balloon release. Spanishlanguage content and Spanish-speaking interpreters and psychosocial support were available.
In response to the COVID-19 global pandemic, we adapted our Day of Remembrance to an entirely virtual event for 2020 and continued the all-virtual platform in 2021. The Quality of Life Steering Council of the Patient and Family-Centered Care initiative, 12 bereaved parents, bereavement program coordinator, psychosocial support staff, information technology team, and palliative care physicians and APPs collaborated to develop this virtual event. Bereaved parent-led topical discussion groups were added at the recommendation of the Quality of Life Steering Council. The virtual events had the same aims of the in-person event: to honor the lives of children who have died and to create or maintain connections between bereaved families and staff. Table I provides an overview of the in-person Day of Remembrance events and how they were adapted for the online setting.

Methods
Bereaved parents from the previous 5-6 years whose child died at least 6 months before the event were invited by email and traditional mail. Demographic data of attendees were collected (Table II) via an institutional registration platform. Additionally, we emailed all attendees a survey after each event and invited them to provide feedback on the event components using a five-point Likert scale (1 = I did not like it at all, 5 = I liked it very much), with the option to elaborate on their rating via an open-text response. We were particularly interested in feedback about participant experiences with the parent-led discussion groups because this was a new activity introduced for the virtual events (Table I).
We also collected website analytics to track total video views (number of times video was played from start, viewed for any amount of time) on the event website on the day of each event and for 1-month following each event (2020, 2021). For total views, we aggregated Spanish and English video views.

Results
Family attendance rates (registered families/invited families) across the 3 event years were similar, ranging from 19.2% (in 2021) to 23.8% (in 2020). The number of registered families was similar across length of bereavement. However, a higher percentage of families 5 or more years into bereavement attended the virtual events than the in-person event. We had international registrants every year, with increased country representation for our virtual events (from 7 countries represented in 2019, to 13 in 2020, and 11 in 2021). The number of registrants whose preferred language is Spanish ranged from 9.6% (in 2021) to 14.1% (in 2019). See Table I  Adapting to the Virtual Setting and Participant Feedback Table I provides an overview of the in-person Day of Remembrance events and how they were adapted for the online setting.
The follow-up event survey had responses from 25 participants in 2020 (16%) and 26 participants in 2021 (19%).For both virtual events, over half of the survey participants rated the photo slideshow from the Celebration of Remembrance video as their favorite component of the event (66% in 2020 and 61% in 2021). The family panel discussion was also rated highly, and survey feedback indicated participants stated it was helpful (84% in 2020; 93% in 2021) and meaningful (89% in 2020; 93% in 2021). Additionally, the most common statement about participating in the event from those who had previously participated in the in-person Day of Remembrance was a desire to return to in-person activities.
Participant Feedback for the Virtual Parent-Led Discussion Groups. All survey respondents who participated in the newly incorporated parent-led discussion groups in 2020 and 2021 reported feeling safe and understood and 95% reported having an opportunity to speak. In 2020, many participants registered for the discussion groups but did not attend, resulting in only 1 or 2 attendees plus facilitators in many of the groups. In 2021, parents were assigned to breakout groups as they logged in to the discussion group site, thus ensuring that groups would have 6 participants plus 2 facilitators. In 2020, 69% of participants rated group size as "just right;" this rating increased to 94% in 2021.
Most participants reported feeling connected with other parents (85% and 100%), being able to learn from others' experiences (85% and 94%) and feeling supported (85% and 100%) in 2020 and 2021, respectively. Participants rated discussion group facilitators highly for both years for creating an environment that invited conversation, being welcoming, explaining the purpose of the group and keeping discussions moving. Most participants in both 2020 (87%) and 2021 (94%) thought that the length of the group (1 hour) was "just right."

Discussion
Standardized, hospital-based bereavement care for families and hospital staff is a psychosocial standard of care for families of children who die while under pediatric oncologic institutional care, and many healthcare institutions host some version of a remembrance event for family and staff. 13 Although virtual platforms such as online support groups for bereaved parents existed prior to the COVID-19 pandemic, the adaptation of many other aspects of health care, including the provision of bereavement support in the form of an annual event, has yet to be described and warrants further investigation. 14 This brief report shares our experiences with adapting an in-person institutional annual bereavement event during the COVID-19 pandemic to a virtual format. The adaptation to the virtual setting was feasible and effective, and the event continued to provide a sense of connection to other parents and the institution, despite physical distancing restrictions. This ensured that families had safe, flexible, and accessible bereavement support. The ability to connect with others and feel supported was particularly important given the compounded isolation experienced by bereaved parents due to the overall lack of inperson gatherings. 9 The stated goals of the Day of Remembrance event are for bereaved families to come together and connect with one another while honoring the lives of children who died, to reconnect with health care staff, and to engage in bereavement activities. Although these goals were not prospectively evaluated and we did not have a robust sample size with survey responses, the virtual event was well received. Additionally, we identified several unanticipated benefits through our transition to a virtual format. Most notably, a virtual platform allowed families not otherwise able to travel to the St. Jude campus to attend the event. Moreover, it may have reduced the emotional distress associated with returning to the hospital, which inhibits some families from attending in-person events. Additionally, eliminating the cost and stress of travel may have contributed to the increase in virtual registration. Altogether, with most St. Jude families living outside the county lines and many living outside of the country, the transition to a virtual platform may increase bereavement care equity. Another advantage of our virtual event was that participants could control when they accessed the prerecorded components as the videos remain on the platform indefinitely, giving families the opportunity to share videos with additional loved ones who were unable to attend. Some participants continued to access the videos for months after the event. Providing families the opportunity to engage with bereavement content on their own schedule may be helpful and may empower families to engage when they are ready, reducing the risk of intense psychological distress. 6,13 Although parents had a positive response to the virtual event, such does not appear to substitute for an in-person event. 15 We received free response feedback that many participants looked forward to the return of the in-person event (especially from those who had previously attended an inperson Day of Remembrance event). In an effort to compensate for the lack of interaction with the virtual event, small, parent-led discussion groups were added to the virtual event.
We also worried about identifying and addressing any distress or grief caused by these sessions. Psychosocial support was available over the phone and via telehealth platform throughout the event. Although feedback was limited, no emotional distress was reported by facilitators or participants. Participant feedback indicated these sessions were helpful and appreciated.
A virtual structure/component for institutional bereavement events might also offer a lower-cost opportunity for providing bereavement events in resource-constrained settings. A virtual platform not only provides an option for palliative care and bereavement support teams to reach more families and offer more-tailored grief and bereavement care but also enables families with similar cultural, religious, and social beliefs to connect with one another through the  parent-led discussion groups. Lower-cost virtual platforms in institutions might also inform health services about the experience of bereaved parents at their institution so that they can address priority-needs and contribute much-needed findings in the field of parental grief and bereavement. Many programs could benefit from this approach, but the largest benefit might be for palliative care programs in low-and middle-income countries, which bear most of the burden of childhood death across the world. As such, these countries have the most children with palliative care needs but the least amount of access to such interventions and wide cultural, social, and religious heterogeneity exist. [16][17][18] Overall, the transition from an in-person Day of Remembrance to a virtual event successfully met the previously stated objectives of the event. Virtual memorial events are feasible and may be helpful in providing more equitable bereavement care in supporting bereaved parents. Acknowledging the value of in-person events with the added benefits of a virtual platform, we plan to move toward a hybrid model in the future. In striving for ongoing quality improvement, we will continue to evaluate and revise our events to suit the evolving needs of our patients' families. Additional studies to further evaluate the impact of virtual and hybrid events on parental grief outcomes are warranted. n