Virtual support groups in pediatric hematology/oncology during COVID‐19: Lessons learned from the SickKids experience – Kaka – – Pediatric Blood & Cancer

1 INTRODUCTION

The novel coronavirus (COVID-19) pandemic caused by the coronavirus SARS-CoV-2 has redefined everyday life and medical care for people around the world. Physical distancing, shelter and staying at home has significantly disrupted medical and psychosocial care for children with life-threatening illnesses. Under normal circumstances, being diagnosed with cancer or a serious blood disorder can be one of the most difficult experiences a family can experience. Processing feelings of shock, guilt, and sadness while adjusting to the major life changes that come with the diagnosis can be very stressful. However, the COVID-19 pandemic, with its accompanying physical and social isolation, has made this experience infinitely more challenging. As a result, this patient population is particularly vulnerable to both the medical and mental repercussions of COVID-19.1 Virtual group platforms are promising psychosocial strategies to help support patients and families with serious medical conditions.2

Virtual support groups can reduce stress, minimize feelings of isolation and improve the ability of patients and families to cope with disease-related stressors. These groups connect individuals of different diagnoses with age-appropriate resources3 and provide participants with a platform to support each other, engage in emotional expression, and share their different experiences in a safe, accessible space.4 Unlike group psychotherapy, the emphasis in these groups is group modality is dealing with a shared stressful experience, rather than targeting a specific psychological symptom or condition.

The hematology/oncology program at The Hospital for Sick Children (SickKids) in Toronto, Canada, one of the largest pediatric hospitals in the country, has transformed its traditional psychosocial support program to adapt to COVID-19 restrictions. This commentary outlines the transformation process, barriers perceived and lessons learned in the future post-pandemic to maintain seamless care for patients and families.

2 PROCESS AND PROGRAMS

Before March 2020, patient and family-oriented support was mainly delivered on-site in the hospital. With the onset of the pandemic, this model had to be reinvented within weeks, given the limitations on face-to-face interaction between patients, families, and psychosocial staff. SickKids’ mission to transcend geography and expand virtual healthcare during COVID-19 and beyond encouraged the psychosocial team to adapt to continue supporting patients, siblings and caregivers.

In preparing for the shift to virtual care, using available literature and collective expertise, the psychosocial team carefully considered the many elements needed to best approach a therapeutic personal environment. These elements include the virtual impact on participant recruitment, explaining confidentiality and ensuring privacy, collecting emergency contact information, creating a welcoming, safe environment, keeping participants engaged, checking for signs of distress and planning group closures. Confidentiality and consent/consent were explained and obtained during participant recruitment and were reassessed at the start of each group session. Groups of physician escorts were billed and mapped to the patient’s medical record. The following virtual supports using Zoom for Healthcare were adapted and developed by the psychosocial team:

Hemoglobinopathy and hemostasis programs: two closed (meaning all members started the group at the same time), 60-minute virtual groups were held once a week for 6 weeks for patients aged 8-15 years, focusing on themes such as effect of the disease about school and family, relationships with peers and coping with challenging emotions.

New oncology diagnosis for siblings: Siblings of newly diagnosed patients were offered to participate in a 90-minute virtual psychoeducational session aimed at increasing understanding of the disease and connecting with health professionals. Sessions were offered monthly.

Oncology Caregiver Workshops: 60-minute, open (meaning new members can join at any time) virtual psychoeducational health care practitioner workshops covering seven themes (one per workshop), including mindfulness strategies, promoting healthy nutrition, and sleeping habits during treatment and supporting children with medicines and medical procedures.

Teen photovoice groups on active cancer treatment and teen siblings of cancer patients: Separate virtual groups for teens and siblings provided the opportunity to meet, reflect and share issues about their own or their sibling’s treatment journey using of photography. Groups were closed, met once a week for 7 weeks, and sessions lasted 90 minutes.

Teens4Teens: A virtual open, walk-in community for teens at every stage of their cancer experience, included psychoeducational and peer support components, the latter enabling teens to find commonalities and share coping strategies. Sixty-minute sessions were held once a week for six months.

Camp Ooch & Camp Trillium: Camp-style virtual programming connected children, teens and families through activities such as peer support, talent shows and virtual campfires. Sessions were open, held several times a week, and ranged in duration from 60 to 90 minutes.

3 NOTES

3.1 Barriers removed

We noted that several barriers were removed with the pivot to psychosocial care for virtual groups, including geographic, socioeconomic, and socioemotional. Participants previously unable to attend in-person sessions shared that they could now participate from homes in remote locations, cars or hospital beds. The need to take time off from work and school, costs associated with transportation and parking, and arranging childcare were largely eliminated. Siblings who were unable to attend the hospital due to COVID-19 restrictions were still able to benefit from supportive and educational interactions with the multidisciplinary team. Many participants were found to feel more comfortable and less distracted physically and emotionally compared to the hospital environment. Teens were especially prone to building social bonds by maximizing the technology features of the Zoom platform, such as chat boxes and comments.

3.2 Introduced barriers

The rapid virtualization of carriers also brought certain barriers. While technological innovations in healthcare are generally designed to improve access, we were aware of the disproportionately poor access to reliable high-speed internet and electronic devices for people from racial or ethnic minorities, lower socioeconomic background, lower digital literacy or people with limited English language. skill.

Another added barrier was the lack of private space to join groups. This was of particular concern for both teens and caregivers, both of whom often want to protect the other from their own emotional illness-related concerns. Using headphones and a room away from others helped, but did not fully guarantee a confidential environment.

The increased distance between caregivers and patients, as well as between patients, prevented opportunities for more organic formation of social connections found in face-to-face interactions, such as entering the room early, sharing drinks and leaving the building together. Finally, signs of online fatigue were noted in some groups, with many participants working after school or in front of a screen. A minority reported feeling tired or restless as a result, although this was not observed across the groups.

4 LESSONS LEARNED AND NEXT STEPS

While legitimate concerns about equality of access, privacy and engagement remain, the COVID-19 pandemic has highlighted the benefits and potentially substantial clinical impact of virtual psychosocial care. It was possible to develop the groups, in terms of observations of referral numbers, attendance rates, time of the facilitators and financial costs. Based on informal feedback from participants during sessions, the groups were well received by patients and families and were smoothly adapted to the specific needs of younger children, teens, siblings and caregivers. As an example, the culminating exhibition of the Photovoice Group for Teens, a public display of the participants’ photographic works and stories developed over 7 weeks of the group, was held virtually this year for the first time. The turnout at the peak was over 150 attendees, a record for the event. Invited guests, including oncologists, nurses, allied health professionals and administrators, as well as the group counselors, teen participants and their families, uniformly described a highly engaging and profound experience. This case, along with countless others since the onset of the pandemic, has shown us the potential to virtually permanently shift elements of group psychosocial care into the care of the pediatric haematology/oncology population.

Moving forward, we must consider the unique characteristics and needs of our patients and families, including social determinants of health, digital literacy and linguistic diversity. Healthcare providers and the hospital share a responsibility to advocate for equal access to virtual care and to educate patients and families about opportunities for virtual groups. In addition, given the high proportion of immunocompromised individuals in this population, the frequency of hospital visits, and the number of school and work days missed as a result of treatment, virtual care may provide clear benefits for this group. New virtual programs should be developed and old ones modified with the above considerations in mind.

Existing guidelines for the responsible delivery of virtual medical and mental health care are useful frameworks and can be adapted specifically for use in psychosocial hematology/oncology care in children. Future research is needed to create evidence-based virtual programming; for example, in addition to the standards of psychosocial care for children with cancer and their families

The SickKids team has formed groups that transcend geographic location to provide psychoeducation, peer support, and skills-based interventions. Patients and families have been in contact with others who have had similar experiences during a period of communal isolation. The use of technology to foster virtual connections has shown that psychosocial support groups can be integrated into routine psychosocial care well into the future.