By Sandy Cyr
As social beings, connecting with one another is essential for our health and wellness. Spending time with people and maintaining positive relationships yield many physical and emotional benefits. But what if you are unable to connect with others who have a shared experience? For people living with cystic fibrosis (CF), infection prevention and control issues prevent patients from being in the same room with one another.
People with CF carry pathogens that, while harmless to most people, can be deadly to others with the disease. Because of this, people with CF are not able to congregate with each other. While this separation allows people with CF to stay as healthy as possible, it can create feelings of isolation. It makes it difficult for them to share their journeys, ask questions of one another, share experiences, or bond as a community.
The Cystic Fibrosis Foundation (CF Foundation) has developed a creative solution for addressing these feelings of isolation while maintaining health protocols: CF Peer Connect. This electronic forum allows for people living with CF to be able to come together in ways they hadn’t been able to in the past. They “are able to have those authentic conversations with each other, ask each other questions, and be able to focus on topics that are very important to them and of high interest to them at different junctures and different milestones within their lives,” says Kay James, Executive Director of the Cystic Fibrosis Foundation Carolinas Raleigh Chapter.
The CF Foundation was founded in 1955 and through the years has grown to include a network of over 70 chapters across the country. In North Carolina, there are two chapters: one located in Raleigh that covers 60 counties, and the other in Charlotte that covers the other 40 counties in the state. Chapters work collaboratively with one another to share information and to support CF patients and their families.
The CF Peer Connect program was piloted in 2016-2017 and the program officially launched in November 2017. CF Peer Connect was designed out of the recognition of the need for adults with CF to be able to connect with each other and to have the ability to communicate with each other. Because people with CF cannot be in the same room as one another, and are advised to maintain a distance of at least 6 feet from each other outdoors, there was a sense of isolation they felt with not being able to attend events together. It was this sense of isolation, of not being able to connect with each other that led to the CF Foundation creating a way for patients to be able to speak with each other virtually.
The program is community-driven. The platform offers opportunities for guided discussions around topics and subject matters that people with CF identify. “That was the need and that was the intention from the beginning,” according to James. “Things that you or I maybe don’t think about are very important topics in the minds of people living with cystic fibrosis.” Through the program, the CF Foundation has found that the best support sometimes comes from talking to someone who knows what it is like to deal with things that may impact a person living with the disease. CF Peer Connect provides a way for people with CF to best have those conversations with each other and share with each other how they came to the decisions they have made around life transitions and milestones.
CF Peer Connect allows for listening and responding, not just between people with CF, but from their support systems as well. The CF Foundation, as well as the interdisciplinary teams of caregivers who work in concert with the Foundation, are better able to understand and respond to the challenges – social, emotional, and medical – that people with CF experience simply by giving thema platform to share their thoughts, their concerns, their questions, their experiences. Through this process, the Foundation is able to develop programs in response to community concerns.
While CF Peer Connect is still relatively new, the response from people living with cystic fibrosis has been extremely positive. They feel that they receive good suggestions and insights from others with the disease. They have gathered a lot from being able to participate and they feel that they have a voice. By sharing their thoughts and feelings, by having the ability to ask each other what their thoughts are, by asking questions and voicing concerns, people with CF are able to bond in ways that previously were not possible. The social and emotional needs of the patients are being met in ways that previously weren’t possible.
By providing a space for people with CF to come together virtually, the CF Foundation has helped members of the community get reacquainted with one another. “We want to improve the quality of life for others,” says James. CF Peer Connect has been extremely valuable in bringing the community together. Through CF Peer Connect, people living with CF have a platform to come together with one another as a community.
Kay is the Executive Director of the Cystic Fibrosis Foundation Carolinas Raleigh Chapter located in Raleigh, which is responsible for Communications, Advocacy, Volunteer Development, Program Services and Fundraising for the Cystic Fibrosis Foundation within 60 of the 100 North Carolina counties.
Sandy Cyr is the Managing Editor for the Philanthropy Journal, and a fan of all things related to the nonprofit sector.