Web-Based Support for Telomere Biology Disorders
Author Information
Author(s): Mavragani Amaryllis, Siermann Maria, Pearce Emily Eidenier MPH, PhD, Majid Alina MPH, Brown Toniya BA, Shepherd Rowan Forbes PhD, Rising Camella MS, RDN, PhD, Wilsnack Catherine LMSW, MSW, Thompson Ashley S MSGC, Gilkey Melissa B MPH, PhD, Ribisl Kurt M PhD, Lazard Allison J PhD, Han Paul KJ MD, MA, MPH, Werner-Lin Allison LCSW, PhD, Hutson Sadie P RN, PhD, Savage Sharon A MD
Primary Institution: National Cancer Institute, National Institutes of Health
Hypothesis
This study explored internet-based information-seeking and social support practices and perspectives of patients with telomere biology disorders (TBDs) and their caregivers.
Conclusion
Individuals with TBDs and their caregivers reported frequent use of web-based informational and emotional support, but ambivalence about the benefits and liabilities of these resources may impact their adoption and adherence.
Supporting Evidence
- Most participants engaged in web-based information-seeking (91%) and TBD-specific social media (81%).
- Participants expressed ambivalence about web-based support, citing tensions between information-seeking and distrust.
- Web-based resources were seen as both empowering and overwhelming, impacting their use over time.
- Privacy concerns were frequently mentioned, affecting participants' willingness to share personal information online.
Takeaway
People with rare diseases often look online for help and information, but they can feel confused and overwhelmed by what they find.
Methodology
Qualitative descriptive study using semistructured interviews of patients with TBDs and caregivers, followed by thematic analysis.
Potential Biases
Participants may have been more likely to use internet resources due to their recruitment methods, potentially introducing bias.
Limitations
The study used a self-selected convenience sample, which may not represent the wider TBD population, and included mostly female participants.
Participant Demographics
The majority of participants were female (88%), aged 27 to 74 years, with most having undergone genetic testing.
Digital Object Identifier (DOI)
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