Empowering Families Through Online Support Communities: Influence on Pediatric Tracheostomy Decisions

Sunday, October 12, 2025

10:00 AM - 10:06 AM EDT

Location: 233-234

Disclosure(s):

Liliana Arida-Moody, BS:

faculty for this accredited education activity has no relationship(s) with ineligible companies to disclose.

Jason S. Park, MD, PhD:

faculty for this accredited education activity has no relationship(s) with ineligible companies to disclose.

Introduction: Online support communities (OSC) serve as important tools for patients and their families to learn, share, and connect with others facing similar medical experiences. This study aims to identify factors influencing OSC utilization and their impacts on medical decision-making for patients and caregivers of children with tracheostomies.

Methods: A survey developed with multistakeholder collaboration investigating OSC use was disseminated via international social networks on Facebook used by patients and caregivers of children with tracheostomies in January 2025. Qualitative and quantitative data were analyzed.

Results: Of the 62 respondents, 62.5% were parents, 23.3% were another family member, and 14.2% was the patient with a tracheostomy. The majority of respondents (87.3%) interacted with social media at least a few times per week; 85.5% reported that OSC at least somewhat influenced tracheostomy care decisions. The majority of respondents achieved learning from other’s experiences (74.5%) and learned helpful tips for tracheostomy care (61.8%) through OSC use. Nearly half of respondents reported that OSC influenced which physician or institution they sought out for medical care, and that they used OSC to learn about treatment options. Individuals identifying as White were more likely to use OSC frequently (p=0.002) compared to other races. Individuals who use OSC with increased frequency place more trust in OSC information related to tracheostomy care (p=0.036) compared to users who use OSC less often.

Conclusions: OSC are often used by caregivers and patients to learn from shared experiences and obtain tracheostomy care tips. They also significantly influence care decisions, including the selection of physicians, institutions, and treatments. Physicians and healthcare providers should engage with OSC to ensure families have access to accurate, reliable information, empowering them to make informed decisions.

Presenting Author(s)

Ina A. Lee, MS

Medical Student
Vanderbilt School of Medicine
Nashville, TN, United States

Disclosure information not submitted.

Co-Author(s)

Roberto N. Solis, MD

Physician
Driscoll Children's Hospital
McAllen, TX, United States

Disclosure information not submitted.
Erika L. Strong, APRN, CPNP-PC/AC

Pediatric Otolaryngology-Head and Neck Surgery Inpatient/Outpatient Nurse Practitioner
Monroe Carell Jr Children's Hospital At Vanderbilt
Nashville, TN, United States

Disclosure information not submitted.
Liliana Arida-Moody, BS

Medical Student
Vanderbilt University
Nashville, TN, United States

Disclosure(s):
faculty for this accredited education activity has no relationship(s) with ineligible companies to disclose.
Jason S. Park, MD, PhD

Assistant Professor
Vanderbilt University
Nashville, TN, United States

Disclosure(s):
faculty for this accredited education activity has no relationship(s) with ineligible companies to disclose.
Kalpnaben R. patel, CCRP

Clinical Translational Research Coordinator
Vanderbilt University Medical Center Department of Pediatric Otolaryngology - Head and Neck Surgery
Franklin, TN, United States

Disclosure information not submitted.

Senior Author(s)

Christopher T. Wootten, MD, MMHC

Professor, Department of Otolaryngology--Head and Neck Surgery
Vanderbilt Medical Center
Nashville, TN, United States

Disclosure information not submitted.