Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Introduction

Parental grief after the loss of a child is considered to be one of the most intense and long-lasting forms of bereavement. ¹ Feelings of intense sadness, yearning, regret, and unfinished business are common in the months and even years after the death of a child, placing parents at risk of adverse mental and physical health.^2,3 Although the intensity of these feelings may ebb over time, the grief is lifelong with bereaved parents having to learn how to integrate their loss into their lives and new identities.^4,5 Relational connection and community support have been identified as protective factors in the processing and adaptation of parental grief. ⁶

Parental grief may also be exacerbated by secondary losses, including loss of the relationship with the child's medical team. ⁷ Bereaved parents identify their child's medical team as an ongoing part of their grief journey and report the importance of maintaining these connections past the death of their child. ⁸ Hospital-based or staff-engaged bereavement care services help families feel more supported and may lead to improved familial coping. ⁹ Bereavement care may be provided to families through a variety of interventions, including phone calls, written resource materials, remembrance mailings, and ceremonies, as well as organized group, peer, and sibling support group programs. ¹⁰

More than one-third of pediatric palliative care teams do not provide bereavement support groups for parents. ¹¹ In the early months of the coronavirus pandemic, 20% of those teams that offered support groups for parents canceled these support groups. ¹¹ Bereaved parents in this same timeframe depicted increased isolated because of the inability to connect with family or attend support groups. ¹² In the face of the coronavirus pandemic, face-to-face interactions between care providers and patients or family members are being replaced with virtual ones whenever possible. For organizers of bereavement support groups, this presents a particular challenge, as the physical presence of, and interaction with, other bereaved parents are vital components to the development of a sense of community fostered at these groups. Pediatric palliative care teams are now quickly having to adjust their bereavement support programs, either canceling or postponing support groups altogether, or moving them online with the hopes that they are still able to provide meaningful support to grieving parents.

When faced with the cancelation of our hospital palliative care team's planned in-person, inaugural support group for bereaved parents due to the coronavirus pandemic, our palliative care team discussed support group cancelation versus transition to an online format. The team weighed concern as to whether the online platform would be usable, accessible, and acceptable by families. Our greater concern was the risk of online interactions feeling more distant or less supportive than in-person presence. The antonym of “virtual” is “actual.” We weighed whether a virtual support group could actually support bereaved parents in their grief experiences.

Within the pediatric palliative care literature, there are no data on the experience of bereaved parents receiving virtual grief support interventions. Online support groups for bereaved parents may serve as a format to foster connection and continuation of bereavement support during the current public health need for physical distancing. The objective of this study was to explore the programmatic potential for offering a virtual bereaved parent support group and the experiential perspectives of bereaved parent participants with a focus on technology acceptance and group communication dynamics.

Methods

The Institutional Review Board (IRB) and the coronavirus disease 2019 (COVID-19) Scientific Review Committee determined the “Going virtual in the face of COVID-19: Can an online support group for bereaved parents function as an alternative to an in-person one?” protocol to be exempt from full review (IRB 361-20-EX).

All legal guardians of children who had died between the years of 2018 and 2020 at one free-standing Children's Hospital in the Midwest received a hand-written invitation to the virtual bereavement support group, accompanied by a packet of Forget-Me-Not flower seeds mailed to the home address of record. These families would have received a written invitation to the same hospital's Annual Remembrance Service, which is a hospital-based and staff-supported memorial service, which was canceled due to the coronavirus pandemic. A total of 248 invitations were mailed in either English or Spanish (based on the primary language spoken at home recorded in the electronic medical record) with an estimated 25 returned envelopes due to incorrect/wrong address. Six bereaved parents replied with intention to join the virtual bereavement support program.

The virtual bereavement support program was hosted by two trained grief facilitators from Grief's Journey^© (a grief support organization in active collaboration with the palliative care team). Sessions were ∼1.5 hours in length and were specifically planned to address the needs of grieving adult family caregivers. The eight-session support group met every Tuesday evening utilizing a Zoom platform (from July 7 to August 25, 2020). Each week consisted of a theme from the Grief's Journey Family Bereavement Curriculum with a thematic topical summary and psychoeducation provided at the onset of each week's meeting. Topics included: Introductions and Icebreakers, Exploring Death, Identifying How to Express and Cope with Feelings, Memories and Remembering, Identifying Changes After a Death, Unfinished Business, Learning Self-Care and Support, and Learning to Say Goodbye. Two trained and certified grief counselors prepared discussion questions and interactive activities before each week's group and remained logged in for the duration of the online support group to facilitate content and group conversation. The sessions were semistructured. The support group was offered free to all participants. Anyone who attended at least one virtual session over the eight-week offering and are older than 18 years were invited to be included in the study.

On completion of the eight-week summer virtual support group, participants were provided with contact information regarding family-based grief counseling resources and received an electronic e-mail link to the optional electronic survey. A reminder e-mail was shared 12 days after the initial survey. The survey was independently reviewed, piloted, revised, and re-piloted by an interdisciplinary team (two psychosocial specialists, one social scientist, one grief facilitator, two social workers, and one palliative care physician) before administration on RedCap^©. The survey consisted of 49 questions.

The Technology Acceptance Model (TAM) and the Other Communicated Perspective-Taking Ability (OCPT) scale were embedded within the survey. The 15-item TAM was developed to explore participants' perceptions of telehealth ease of use and usefulness with attentiveness to the study subjects' behavioral elements such as attitude toward technology modalities as part of human interactions. The TAM consists of nine thematic question domains: perceived technology usefulness, ease of use and learnability, intention to use, subjective norm, relevance, interface quality, reliability, satisfaction, and experience.^13,14 The internal consistency reliability for the TAM instrument has been reported across cohorts as Cronbach's alpha >0.75. ¹⁵

The OCPT was developed by Koenig Kellas et al. ¹⁶ to assess six sets of communicated perspective-taking behaviors identified by Koenig Kellas et al., ¹⁷ including attentiveness, agreement, relevant contributions, coordination, positive tone, and freedom, to tell the story. The measure has been used reliably across a variety of studies, including partners' perceptions of each other's communication in the context of miscarriage (α = 0.93–0.95) ¹⁸ and telling friends stories of difficulty (α = 0.80). ¹⁹ The scale has also been piloted in small groups of parents participating in a narrative parenting intervention. ²⁰ The 19-item scale consists of items (e.g., “My group was attentive to me during our conversations”) rated on a Likert scale (1 = Strongly Disagree, 5 = Strongly Agree). Six items are reverse-coded, such that a composite score of the measure indicates higher levels of perceived OCPT.

Survey responses were obtained from RedCap. Health-protected information was not collected within the survey. The analyses were descriptive and univariate in nature. The study team utilized counts for categorical variable responses.

Results

Six parents participated in the bereaved parents virtual support group (Table 1), all of whom completed the program assessment at the end of the program (response rate 100% for group participants). One father participated in the group, with all other participants being mothers of deceased children. Respondents were all non-Hispanic white and in their thirties (mean age 32, range 31–37), with educational attainment ranging from high school completion (three parents), a bachelor's degree (two parents), and a master's degree (one parent). Parents lived an average of 126 (range 16–200) miles distance from the hospital. Decedent children had a diverse range of primary diagnoses, including congenital cardiac, genetic, and oncologic conditions, and ranged from being just a few days to several years old (range four days to five years). The child's death had occurred from seven months to one year earlier, with four of the children having died in the hospital and two having reached end of life at home with hospice presence.

One parent reported having receiving counseling before the support group and one parent reported accessing grief support via social media but the remaining four parents stated that the online group was their first form of accessing grief-related support.

Respondents cited emotion (5/6 parents), distance (4/6 parents), cost of travel and obtaining childcare for other children (both 3/6 parents), scheduling challenges (2/6 parents), and missed time from work (1/6 parents) as barriers to in-person visits to the children's hospital, where bereavement support would have been offered pre-COVID-19. Neither access to transportation nor exposure to germs/infection risk while at hospital were reported barriers (0/6 parents). Four out of six parents noted that they would not have attended an in-person bereavement support session if a virtual option had not been available. Five respondents had never to only rarely used telehealth in the year before their participation in the bereavement group, with only one parent having utilized telehealth more than three times.

Out of the eight program sessions, half of the bereaved parents attended all sessions, with the remaining three parents attending six or seven sessions. Parents uniformly reported feeling that they had benefited from the program, felt satisfied overall with their experience in the program, and reported that they are better equipped to supporting their other children in their grief. All six respondents indicated that they would recommend this telehealth grief support group to other bereaved parents. When provided a list of five potential benefits from the group (communication, coping, peer support, education, grief expression), respondents felt that they had gained better: communication (4/6 parents) and coping (3/6 parents) skills, peer support (3/6 parents), education (3/6 parents), and an opportunity to express their grief (3/6 parents) from participating in the group.

Respondents' assessment of the virtual bereavement support group using the telehealth assessment tools was consistently positive, as highlighted in Table 1. Responses on the TAM Survey indicate that respondents found the system easy to learn, pleasant to use, and acceptable for use as a bereavement support program. All six respondents indicated that they would use telehealth services again to communicate with a grief support group.

The results of the OCPT scale (Table 1) further show that, with regard to interactions with the rest of the group, respondents uniformly agreed that the group helped them tell their story and truly listened when they did. Group participants indicated that conversations felt in sync, and that those in the group contributed meaningfully, and were respectful and kind. Survey results support the idea that participants not only understood one another's perspectives, but they were also able to communicate and affirm that understanding through verbal and nonverbal behavior even using an online interaction platform.

Discussion

This descriptive pilot study revealed the programmatic support of offering an online grief group for bereaved parents. Bereaved parent participants experienced the online platform as an acceptable communication format with the interpersonal dynamics regarded as supportive. In this study, the parent participants were telehealth novices and yet still expressed the technology format of the group as acceptable and usable. The technology format fostered consistent attendance and self-perceived impact in communication, coping, education, and emotional expression domains.

The online format fostered access to support beyond parental perceived barriers. The most prominent barriers to traveling to the hospital where parents would have participated in an in-person bereavement support group were emotional barriers concurrent with physical distance barriers. Notably, these barriers are independent from any safety concerns related to the coronavirus pandemic (0/6 parents reported infectious concerns as a barrier to in-person bereavement support although the program occurred during the summer months of the pandemic), suggesting that continuing to offer virtual bereavement support may be worthwhile. The finding that two-thirds had not yet accessed a form of grief support before the online support group and that two-thirds of parents reported they would not have attended an in-person support group reveals the online offering as first-line for the majority of parents. As this study was conducted during the coronavirus pandemic, the in-person versus virtual barriers were notably reported by parents as not related to the pandemic. This warrants consideration of virtual bereavement support offerings even after the current public health crisis. An online bereavement group may represent the only support format that is both accessible and acceptable to these respondent parents.

Participants described the group experience as supportive and relational. In debriefing conversations with the palliative care team, the host grief facilitators subjectively depicted the culture and tone of the online grief meetings to be comparable to in-person dynamics of solidarity and support. Even with online platforms, participants depicted a sense of feeling heard and understood. The size of this group was appreciated by the grief facilitators as ideal for communication dynamics and within the recommended “group size of five to eight participants” grief group size. ²¹

Hospital-based organized support offerings for bereaved parents are regarded as best practice in pediatrics. ¹⁰ Delivery of bereavement follow-up care to bereaved parents remains inconsistent across pediatric settings and palliative service lines. Proposed standards for bereavement follow-up in the pediatric oncology population suggest a minimum of one contact from the pediatric medical team with families after the death of a child. However, even this minimum is not consistently met. ²² In a study of bereavement follow-up in pediatric oncology centers, approximately two-thirds of participants reported that they did not have structured policy to assess bereavement needs, and only one-third reported “always” or “often” to routinely assessing parental bereavement needs. ²³ The state of the science of bereavement care for parents is noted as “poor” with lack of intervention-based descriptions or outcomes reporting. ⁹ The findings from this study reveal the potential for pediatric palliative care teams to address this gap in bereavement outreach and best practice outcomes through creative use of online platforms.

Limitations of this study include small sample size and lack of participant diversity (primarily non-Hispanic white females in similar age range). Accessibility to technology may have been a factor if the participant pool were larger, more diverse, or a different geographic location. Those families that may be in most need of additional support may be unable to access it if the support requires technology equipment and reliable Internet service, warranting consideration for equity in access. Strengths of the study include retainment rate, successful programmatic offering for rural-based families, and the opportunity to explore the effectiveness of online support in participants' favor.

Conclusion

This descriptive pilot study offers consideration of an online support program as a pediatric palliative care programmatic outreach, offered by either trained staff or in-partnership with a local grief organization. In the setting of in-person meeting restrictions with the coronavirus pandemic, further studies are warranted to explore the impact of online support for bereaved parents. Response rates in parent bereavement studies are notably low,^24–26 which limits access to a comprehensive understanding of bereaved parent preferences for grief care. Recognizing the high number of families who were mailed a personalized invitation but did not engage in this participation warrants exploration about the reasons for not participating and potential barriers to engagement. Whether more parents would have responded to an invitation for an in-person support group format is unknown. Future work would necessarily consider outcomes inclusive of parent physical and emotional health metrics.

With the growing popularity of “virtual memorials” and informal grief support through online mutual support groups even before the onset of the pandemic, grieving has increasingly moved to the virtual sphere in recent years.^27,28 Despite this trend, existing data on such virtual supports are limited.^29,30 We were unable to find any empirical research on parental participation in live, structured virtual bereavement support groups such as the one described in this article. The transition of funerals, memorial events, and community death rituals to online platforms during the pandemic may continue to transition not only public health necessity but also cultural acceptance of technology-connected grief gatherings even after the pandemic.^31,32

Although this small study should not be interpreted to imply that online platforms should indefinitely replace in-person support, the study fosters an understanding of parental perspective on participation as acceptable and relational. Alternatives to the language of “virtual” such as “online community” or “technology-mediated gathering” or “internet connected group” may be considered as future descriptors of this supportive intervention, particularly as “actual” represents an antonym to the word “virtual.” As one participant shared in a follow-up correspondence, “I felt less alone. I felt like I had a safe place to feel my feelings and express my emotions and share my son's story. There was an actual warmth to the virtual hugs shared in this caring group.”