Implementation of Virtual Fontan Heart Camps During a Pandemic

Abstract

Background

Children with a Fontan operation represent a unique form of congenital heart disease (CHD) that requires multiple cardiac surgeries and procedures with an uncertain long-term outcome. Given the rarity of the types of CHD that require this procedure, many children with a Fontan do not know any others like them.

Methods

With the cancelation of medically supervised heart camps due to the COVID-19 pandemic, we have organized several physician-led virtual day camps for children with a Fontan operation to connect with others in their province and across Canada. The aim of this study was to describe the implementation and evaluation of these camps via the use of an anonymous online survey immediately after the event and reminders on days 2 and 4 postevent.

Results

Fifty-one children have participated in at least 1 of our camps. Registration data showed that 70% of participants did not know anyone else with a Fontan. Postcamp evaluations showed that 86% to 94% learned something new about their heart and 95% to 100% felt more connected to other children like them.

Conclusion

We have demonstrated the implementation of a virtual heart camp to expand the support network for children with a Fontan. These experiences may help to promote healthy psychosocial adjustments through inclusion and relatedness.

Introduction

Congenital heart disease (CHD) is the most common congenital abnormality occurring in 1 in 100 live births. A rare and complex lesion is the functionally univentricular heart with a birth incidence of ∼5:10,000 representing 7.7% of all congenital heart defects.¹ These children undergo 3-staged palliative surgeries during childhood culminating in the Fontan operation. With medical and surgical advances, the prognosis of children with a Fontan has improved with many surviving to adulthood. However, the long-term outcome remains uncertain with a risk of heart failure, noncardiac complications, and the potential need for heart transplantation later in life. A child with a Fontan operation will encounter many challenges. Frequent absences from school for appointments and hospitalizations, scars from multiple surgeries, and possible learning difficulties can lead to these children feeling different from their peers. Children may experience physical limitations due to decreased exercise tolerance which may decrease the quality of family life and further affect social and emotional well-being.^2,3 Children's health is affected by feelings of safety when among those with whom they socialize, therefore ensuring that children stay healthy includes a thriving social network.⁴ Prior to the Severe Acute Respiratory Syndrome-Coronavirus 2 (COVID-19) pandemic, medically supervised heart camps allowed children to meet similar peers.^5,6 In March 2020, the COVID-19 pandemic added to the challenges these children already face through the cancelation of such camps due to the increased risk of illness in those with CHD.⁷ The Virtual Heart Connection was designed with 3 major goals: (1) Peer support: meet other children with a Fontan, (2) Education: teach participants about their heart, and (3) Physical activity and creativity: engage in fun activities together. We postulated that building social connections through a virtual Fontan camp would have a positive impact on children. The aim of this study is to describe the results of the implementation of this initiative.

Materials and Methods

The Virtual Fontan Heart Camp is a 1-day (6 h), physician-led, free camp delivered via Zoom™. We implemented 2 small pilot camps 6 months apart (August 2020 and February 2021) with a group of 7 local children and demonstrated adoption and appropriateness based on positive verbal and written feedback from the families. The team then presented a detailed plan for expansion to the Western Canadian Children's Heart Network (WCCHN), which provided funding for 2 Western Canada-wide “WCCHN” camps (July 2021 and February 2022). The WCCHN interprovincial database identified all children with a Fontan aged 8 to 14 in Western Canada (n = 192) and fliers were mailed to them 3 months prior to the event. For the second WCCHN camp, all previous participants were also notified by email. Fliers were placed in outpatient cardiology clinics and all cardiologists and centers within the WCCHN were notified. Advertisements were posted on local congenital heart organizations (Children's Heart Network of British Columbia (BC); Children's Heart Society, Edmonton; Heart Beats Children's Society, Calgary) and our own social media sites: https://www.facebook.com/VirtualHeartConnection and https://www.instagram.com/virtualheartconnection/. Children registered via Google Forms which collected demographic and contact information, allergies, whether they knew any other children with a Fontan, questions they had about their heart, and consent for the use of photos or videos. We had a total of 37 registrants for both camps. Due to initial low registration for our second WCCHN camp, we extended our geographical area to include children from the Atlantic provinces as one of our volunteers was from Atlantic Canada.

A typical agenda is outlined in Table 1. Every participant received an activity kit containing craft materials and a small gift (Figure 1), which were assembled and shipped 14 days prior to the event at no expense to the families. Consumables were labeled with an ingredient list and gluten-free or dairy-free options were provided. Education about their condition was delivered through heart-health-themed quiz games; question and answer sessions with cardiologists; and adult Fontan testimonies. Indoor scavenger hunts and dance classes promoted physical activity. Children joined smaller breakout groups for arts, crafts, and cookie decorating (creativity). Breakout groups were organized based on gender and geographical location with 1 to 2 leaders per group of 6 to 8 children in order to promote social connections. An anonymous evaluation survey using Google Forms™ was shared at the end of both WCCHN camps for children and parents to complete together. Activities were rated using a Likert scale (1-5, Figure 2), “yes/no” answers for questions about specific aspects of the camp, and a final open-ended question for any comments. Survey reminders were emailed 2 and 4 days postevent. University of Alberta Health Research Ethics Board approval included a waiver of consent for the use of anonymized feedback data.

Table 1.

Typical Agenda.

Event	Purpose	Description
Intro & icebreaker	Orientation	- Introduce the team and provide information about the day - Icebreaker questions to discuss in small groups
Indoor scavenger hunt (breakout rooms)*	Physical activity Social connection	- Ask them to find specific items and bring back to the group - Talk about why and what they collected - Screenshot at the end
Quiz games (breakout rooms)*	Education Social connection	- Kahoot or Jeopardy - Mad Libs
Cookie decorating (breakout rooms)*	Creativity Social connection	- Instructions provided to the main group - Decorate together in small groups
Fontan testimonies (Adult Fontan survivors)	Education	- Guest speakers share what it is like to grow up with a Fontan and answer questions
Q&A with Pediatric Cardiologists	Education	- Answer questions from the registration survey - Additional questions from the families
DancED	Physical Activity	- Dance instructors teach hip hop dancing to the whole group
Arts & crafts (breakout rooms)*	Creativity Social connection	- Teach them how to do the arts and craft activities - Continue in their small groups and share their creations
Feedback & End	Verbal feedback	- Share creations with the main group - Wrap up, feedback and end

^*All breakout room leaders were either physicians, nurses or medical students.

Figure 1.

Virtual heart connection organization: activity packages were sent to all registrants.

Figure 2.

Example of the feedback form to rank activities.

Results

In total, 51 children aged 11 ± 2 years (53% male) have participated in our WCCHN camps. Of these, 45 are from Western Canada which represents 24% of the 192 eligible children in this area. The geographical distribution of participants is shown in Figure 3 with 43% residing in remote locations (>100 km from a Pediatric Cardiology service). Evaluation response rates were 64% for the first WCCHN camp and 53% for the second WCCHN camp. Survey feedback is provided in Table 2. Participant/parent satisfaction was high with 81% rating the event as “well organized” and 95% agreeing it was helpful to hear from adult Fontan survivors. The most popular session was cookie decorating which was ranked “1 = Best” by 86% to 88%. Comments (positive and constructive) from children or parents about the camp are outlined in Table 3. The success of our camps is evident by 94% to 95% of respondents reporting a willingness to return for a subsequent camp and 62% of children returning for a second time. With each camp, we continue to expand our catchment area and are preparing for a pan-Canadian camp in November 2022.

Figure 3.

Geographical distribution of camp participants.

Table 2.

Feedback Evaluations from the WCCHN Camps: Respondents Answered Yes/No to the Following Questions with the Percentage of “Yes” Indicated in the Columns for Each Camp.

	First WCCHN camp (n = 20) (%)	Second WCCHN camp (n = 17) (%)
Did you learn something new about your heart?	86	94
Did this event meet your expectations?	95	94
I would attend a future online camp	95	94
I would attend this event in person if it were hosted in my own province	90	94
I would attend this event in person even if I had to travel out of province to get there	60	41
I would like to stay in touch with one of the other kids I met today	67	76
Were all of your questions about your heart answered?	85	88
Do you feel more connected now to other kids like you?	95	100
Would your mom or dad be interested in concurrent information sessions tailored to parents?	80	82

Abbreviation: WCCHN, Western Canadian Children’s Heart Network.

Table 3.

Open-Ended Comments (Positive and Constructive) from the Feedback Evaluations.

Positive feedback
“Although she felt a bit self conscious on camera doing virtual, she had fun overall and would be interested in a real camp when it's possible. She enjoyed the other girls, and the laughs. I think connecting the kids is such an awesome idea. She really loved that she was interacting with/and could relate to kids who are like her in terms of the heart/medical journey.”
“My daughter really enjoyed this camp. Thank you very much for running this event. I wasn't sure how engaged she would be on Zoom for so many hours but she was. She didn't want to leave when it was over. She wanted the camp to be longer!”
“The cookies were delicious. I had a great time. Considering it was on zoom, it was clearly an amazing event.”
“This was the first camp my child has attended with other kids with a heart condition. She has been wanting to meet other kids with a similar heart condition. I’m so grateful.”
“She was happy not only to talk with girls that have gone through similar procedures as she had, but to see them too!”
“It helped my son understand his condition and know that there are other people like him who are brave and strong.”
“My son had a really good time at the event. The volunteers were very friendly and helped break the ice with the kids and he had fun getting to know the other kids in his breakout group. Thank you to everyone who put it on!!”
Constructive feedback
“There were times that we found it hard to follow virtually. The virtual event was too long.”
“I would like it if teachers don't remove the chat and let us talk more.”
“There is a wide range of neurodiversity in these children and some of the activities did not seem geared toward that aspect. The quiz about hearts was not well received by my child, nor were the testimonies (though I as a parent did appreciate hearing these stories).” “I wonder if the age 8-14 is too wide of a gap and could possibly be split up to deliver more age-appropriate content?”
“The Hip Hop dancing was hard for me to keep up (the moves were complicated).”
“All the talking I have ADHD so found it difficult at times to concentrate”

Abbreviation: ADHD, attention-deficit hyperactivity disorder.

Discussion

This novel initiative aims to improve the social support networks for children with a Fontan by offering a sense of belonging and community. The acceptability and appropriateness of this initiative were demonstrated by providing a safe, inclusive environment for children and their families to learn and ask questions about growing up with a Fontan through the feedback received (Tables 2 and 3). Being a physician-led camp allowed us to provide immediate answers to the children's questions about their heart condition which were relevant to all attendees. Education about their condition can address sensitive issues that they may not feel comfortable asking their own physician (eg, mental health concerns or activity restrictions).

Medically supervised camps for children with heart disease provide a positive impact on their psychosocial well-being.⁵ A central theme of previous in-person camps has been increased feelings of normalcy by belonging to a peer group and making connections with “others like them.”^5,6 Many organizations have transitioned to virtual learning formats. Even prior to the pandemic, the feasibility of virtual science camps to reach underserved minority students was demonstrated.⁸ Online camps have provided support for children with other chronic conditions.^9,10 An online diabetes camp delivered through social media in Turkey provided diabetes education to thousands of participants.⁹ Children with attention-deficit hyperactivity disorder were found to have significantly higher self-esteem scores after participation in a virtual magic camp.¹⁰ The University of Arkansas College of Engineering also shipped relevant materials to underrepresented minority students for a Virtual Summer camp which was found to be just as effective as in-person camps.¹¹ The advantage of an online camp is that there are few barriers to implementation. With most children having experience with online schooling there were few difficulties maneuvering the Zoom™ platform. Even families that were traveling at the time enabled their children to participate from wherever their location was on the day. Organizing engaging activities (eg, crafts and quiz games) promotes conversations about their creations or answers and builds connections with their peers. Although our craft activities were not targeted as therapy, there is evidence that participation in creative activities can improve mental health and well-being.¹²

Virtual events may allow participants to overcome physical or financial barriers to traveling for in-person meetings and allow for peer support for those living in remote areas. A common finding of online camps in other settings (eg, medical education) is the ability to reach a larger audience.^13–15 This was seen in our camps where 43% of participants resided in remote locations that were >100 km from a major Pediatric Cardiology center. Similar to the diabetes camp which provided opportunities for nationwide interaction, we enabled the formation of interprovincial connections.⁹ Virtual events may also help overcome barriers to in-person meeting participation including attention-deficit disorder, depression, anxiety, and various types of learning disabilities which may occur among children and adults with complex CHD. Furthermore, anxiety at being separated from caregivers for a long period of time is known to impact attendance at specialized camps.¹⁶ During our camps, a few of the children stated that they were reluctant to attend an in-person camp because they did not know any others attending. By having a virtual camp, children can attend from the comfort of their homes and may be encouraged to attend future in-person camps once connections with others are established. The virtual platform also offers benefits for hosts by negating the costs of renting a facility, catering, or the responsibilities involved when supervising minors.

Established organizations such as the Fontan Outcomes Network and the Australian & New Zealand Fontan Registry also provide patient and family focused educational events, however, these are directed at older children and adult survivors. When speaking to adult Fontan survivors about our camps, many have commented that they wished they had something similar during their childhood. While the exact impact of our camp is unknown, the high number (70%) of participants reporting not knowing anyone else with a Fontan suggests that feelings of inclusion and relatedness cannot be underestimated as determinants of health outcomes for these children. Although the Virtual Heart Connection originally aimed to connect children with a Fontan during the pandemic, we quickly realized the families needed much more support beyond occasional day camps. Future plans include sessions that will build on established connections, and opportunities to meet in person through local events.

Starting a novel initiative poses challenges including funding costs and uncertainty regarding initial adoption. Despite the small numbers (n = 7), piloting the idea with a local group of children with a Fontan allowed us to capture fidelity during initial implementation and provided us with the experience necessary to expand our camps. To decrease implementation costs we considered shipping packages to cardiology centers for participant pickup, however, this was not an option due to many children living in rural communities and hospital visitation restrictions. Having a large number of children online required us to “mute all” participants and at times disable the chat box due to inappropriate conversations. This resulted in some frustration among participants which was voiced during the camp, leading them to form their own chat via Discord, a group chat server. Leaders repeatedly reminded participants about safe and appropriate conversations. An inevitable challenge of a virtual meeting that spans geographical locations is determining activity timing suitable for all participants across multiple time zones. Future camps could involve staggering the times by starting earlier in Eastern time zones with all children joining the main group when camp starts for all participants.

The Virtual Heart Camps have focused on a narrow age range of children and a specific lesion, but this may be adapted to other target populations at a national level. Many people with a rare, chronic disease are unable to meet local peers with the same condition. Virtual events provide the opportunity to meet similar peers from any location. These events can be successfully implemented with a core group of moderators, devices with internet connection, and a videoconferencing platform. Enrollment is facilitated by involving specific interest groups through social media and health care centers. Expansion is aided by the support of organizations such as the WCCHN, a network that coordinates pediatric cardiology care between 4 Canadian provinces.

The limitations of this study are the small sample size and a lack of data on nonparticipants. There was also a percentage of incomplete evaluations, and it is possible that those with positive experiences were more likely to complete the survey. We also did not seek independent child and parent evaluations, as parents and children may have different perceptions of what is considered successful. Future studies should include measuring psychosocial outcomes using mental health or Quality of Life surveys to assess the impact and adoption of such events and focus group interviews before and after such camps.

We have demonstrated the acceptability and appropriateness of 2 interprovincial virtual Fontan camps designed to provide greater opportunities to connect families across a wider geographic area. Expanding the social support network for children and their families with rare conditions may help to promote healthy psychosocial adjustment to their condition. The ability to connect children with a Fontan across Canada so they can meet many other children similar to them can show them that they are not alone in their heart journey and may have an immeasurable impact that extends beyond the clinical setting. Even as we look forward to a day when in-person events are once again commonplace, virtual meetings should not be overlooked due to their many advantages.