Adapting to New Platforms

As social media began to rise, the landscape of online support changed. “Eventually, with the coming of social media sites—especially Facebook—message boards and listservs became obsolete,” Cynthia explains. Her focus shifted from maintaining a website to managing a Facebook group, which now has over 8,000 members. “My website is still live at tracheostomy.com, but I don’t keep up with it anymore,” she notes.

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Cynthia’s Facebook group now serves a broad audience, including both pediatric and adult tracheostomy users, as well as those who use home mechanical ventilation. Although Cynthia acknowledges her limited experience with ventilators, her extensive background as a registered nurse for over 40 years provides her with a broad understanding of special needs care. “I had a trach as a baby, and I’ve had two children with tracheostomies,” she shares.

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Evolving Support
The transition from message boards to Facebook has had its challenges. Cynthia notes, “The message boards were better than Facebook in my opinion. They were divided into topics and easier to read, search, and follow.” Despite this, she recognizes the value of Facebook in reaching a wider audience. “Topics on Facebook tend to get buried quickly, but the group still provides valuable support,” she says.

The focus of the Facebook group remains on providing peer support and networking. “Popular topics tend to be either adults with trachs due to chronic disease such as laryngectomies for cancer, or pediatrics with preemies who have airway or respiratory problems,” Cynthia explains. The group also facilitates the sharing of supplies and other resources, enhancing the support network.

Managing a large Facebook group comes with its own set of challenges. “I even have trouble keeping up with the Facebook group, as it has so many members and it is very busy,” Cynthia admits. Nevertheless, she is committed to maintaining a positive environment. “I do occasionally get reports of problem users and block them,” she says. “Thankfully we don’t get a lot of that, and most people find the group very helpful.” Cynthia has established a “terms of service” – which prohibits such things as selling services, solicitations or fundraising, and making false or defamatory comments – to help ensure the group remains a supportive and respectful space.

A Lasting Commitment
Cynthia’s work in supporting families with tracheostomies and mechanical ventilation highlights her dedication to care and community. “While face-to-face support groups are great, the internet has made it possible for people to connect from anywhere in the world,” Cynthia observes. Her Facebook group stands as a testament to her ongoing commitment to providing support and fostering connections among individuals and families facing these challenges.

For those looking for support and community, Cynthia Bissell’s Facebook group offers a valuable resource. Cynthia’s journey and the community she has built continue to offer hope and assistance to many navigating the complexities of tracheostomy and home mechanical ventilation care.