Creating and deepening connections through technology during a pandemic

Purpose: The CF care team and the Metro Chapter of Cystic Fibrosis Foundation (CFF) collaborate by developing a virtual meeting providing emotional support and resources during the COVID-19 pandemic Introduction: Online groups have been used for many years to provide support for communities of individuals living with chronic health conditions (Eysenback G, et al BMJ 2004;328:116) The dire consequences of the COVID-19 infection have made virtual communications surge in popularity The care team moved to a telemedicine platform to conduct health visits with 160 patients The team began identifying themes of anxiety, food scarcity, challenges with online education programming, medication access and financial duress due to business shut downs (Kirk S, et al Health Expectations 2016;309-21) Methods: The CF center social worker and the executive director of the CFF Metro Chapter collaborated to develop virtual meetings to support and educate patients and families during the pandemic The goal was to engage more parents and young adults online to support one another in a community Meetings were conducted on a Blue Jeans Platform and invitations were sent out via personal electronic mail addresses provided to the CF care center A private RSVP link was sent to participants prior to the meeting The meetings are held every two weeks in the evening for an hour, one in English the second in Spanish Discussions are facilitated by parent volunteers and staff, some of whom are bilingual Participants have joined from the metropolitan area, FL, CA and NM Results: Attendance for groups has fluctuated from 5 participants to 25, including fathers, mothers, siblings, grandparents and young adults living with CF Virtual programming includes individuals living with CF whereas in-person meetings could not due to infection protection and control guidelines Meeting participation by the chapter leadership helps identify key issues and needs of the participants, including COVID-19 education and guidance, CF and COVID-19 affected individuals (gathered from the CFF weekly reports of CF Digest), isolation, phased reopening, school re-entry, food scarcity and resources, self-care, and CF FamilyCon 2020 Parents report hope after speaking with young adults Participants shared obstructions to meeting regularly include child care, hospitalization of their family member and working later than usual Shared benefits include reduced anxiety, a forum to share concerns about COVID-19 infection, information about the ways individuals in the CF community are affected by positive COVID-19 results, school re-entry for their children and support and self-care ideas Conclusions: There are many challenges facing patients and families living with cystic fibrosis during the COVID-19 pandemic Developing a collaborative virtual community has been an effective and reliable method of support and education for patients and family members By resourcing staff with experience and language abilities we have been able to expand programming to non-English speaking persons who have been challenged by COVID-19 illness Cost is minimal as staff is volunteering, and group members are using a computer or a telephone to participate, which many already own