Accepted for/Published in: JMIR Formative Research
Date Submitted: Jul 15, 2024
Date Accepted: Oct 18, 2024
“Crying in the wilderness” the use of online support in telomere biology disorders: thematic analysis
ABSTRACT
Background:
Background:
Online information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined online resource use among caregivers of and individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and uncertain prognoses including multi-organ system cancer risk.
Objective:
Objective:
This study explored internet-based information-seeking and social support practices and perspectives of patients with TBDs and their caregivers.
Methods:
Methods:
Our qualitative descriptive study used semi-structured interviews of patients with TBDs and caregivers. Data were transcribed verbatim and thematically analyzed by an interdisciplinary team.
Results:
Results:
A total of 32 adults (median age = 49 years, range 27-74) completed interviews. Most engaged in online information-seeking (91%) and TBD-specific social media (81%). Participants found online resources useful for information-seeking but reported privacy concerns and frustration with forming supportive relationships. Most participants described ambivalence towards online resource use, citing tensions between hunger for information vs. distrust, empowerment vs. overwhelm, disclosure vs. privacy, and accessibility vs. connection. Fluctuations in virtual support use arose from perceived harms, information saturation, or decreased relevance over the course of TBD illness experience.
Conclusions:
Discussion: Individuals with TBDs and their caregivers reported frequent use of virtual informational and emotional support. However, some participants noted difficulty finding peers online and described discomfort with virtual emotional support, suggesting limitations to the value of online resources for meeting psychosocial needs in TBDs. Ambivalence about the benefits and liabilities of virtual resources and persistent medical uncertainty may impact the adoption of and adherence to online support among TBD patients and caregivers. Conclusion: Our findings suggest online psychosocial support should target long-term and multifaceted informational and emotional needs, be user-initiated, be offered alongside in-person formats, provide expert-informed information, and be attentive to personal privacy and evolving support needs of the TBD community.
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