CoChat
Sign Up
Cited by 3Health Literacy and Information AccessibilitySocial Media in Health EducationTelemedicine and Telehealth Implementation

“Crying in the Wilderness”—The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

Open access
Pearce, Emily Eidenier, Majid, Alina, Brown, Toniya, Shepherd, Rowan Forbes, Rising, Camella, Wilsnack, Catherine, Thompson, Ashley S, Gilkey, Melissa B +6 more·2024·JMIR Formative Research
DOI 10.2196/64343PMC PMC11686027

Published version of a preprint

Open this paper in CoChat — free accountOpen PDF

Abstract

Background: Web-based information and social support are commonly used in rare disease communities where geographic dispersion and limited provider expertise complicate in-person support. We examined web-based resource use among caregivers of individuals with telomere biology disorders (TBDs), which are rare genetic conditions with long diagnostic odysseys and uncertain prognoses including multiorgan system cancer risk. Objective: This study explored internet-based information-seeking and social support practices and perspectives of patients with TBDs and their caregivers. Methods: Our qualitative descriptive study used semistructured interviews of patients with TBDs and caregivers. Data were transcribed verbatim and thematically analyzed by an interdisciplinary team. Results: A total of 32 adults completed interviews. Participant ages ranged from 27 to 74 years. The majority (n=28, 88%) were female, occupied multiple TBD roles (eg, patient and parent), and had undergone genetic testing. Most engaged in web-based information-seeking (n=29, 91%) and TBD-specific social media (n=26, 81%). Participants found web-based resources useful for information-seeking but reported privacy concerns and frustration with forming supportive relationships. Most participants described ambivalence toward web-based resource use, citing tensions between hunger for information versus distrust, empowerment versus overwhelm, disclosure versus privacy, and accessibility versus connection. Fluctuations in web-based support use arose from perceived harms, information saturation, or decreased relevance over the course of TBD illness experience. Conclusions: Individuals with TBDs and their caregivers reported frequent use of web-based informational and emotional support. However, ambivalence about the benefits and liabilities of web-based resources and persistent medical uncertainty may impact the adoption of and adherence to web-based support among patients with TBD and caregivers. Our findings suggest web-based 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. This study suggests web-based resources will be most effective in the TBD context when they achieve the following features: (1) offer a variety of ways to engage (eg, active and passive), (2) provide privacy protections in moderated “safe spaces” designed for personal disclosure, (3) offer separate venues for informational versus emotional support, (4) combine web-based relationship formation with opportunities for in-person gathering, (5) provide information that is reliable, easy to access, and informed by medical professionals, (6) remain mindful of user distress, and (7) are responsive to variations in levels and types of engagement. Additionally, advocacy organizations may wish to avoid traditional social media platforms when designing safe spaces for web-based emotional support, instead pivoting to internet-based tools that minimize privacy threats and limit the perpetual public availability of shared information.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.2196/64343

Cites

80 of 80 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Some rare diseases are diagnosed in adulthood, and diagnosis was an initiating factor in seeking online support and information in these patients, similar to caregivers.

    “However, some rare diseases are diagnosed in adulthood, and diagnosis was highlighted as an initiating factor in seeking online support and information in these patients, similarly to the pattern seen in caregivers [33,34].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [34]

    The Results (Overview; no page available) say most participants initiated web-based resource use after diagnosis to find information and disease-specific support groups. The study included adult patients and caregivers, but the cited passages do not establish that the patients who described this pattern were diagnosed in adulthood or report the pattern separately for patients and caregivers. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • Patients search for other people with similar conditions to connect with and want to feel part of a community.

    “Patients search for other people with similar conditions to connect with and want to feel part of a community [31-35].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [34]

  • Privacy concerns and distrust of information online were significant concerns raised by patients regarding social media use for health information.

    “Privacy concerns and distrust of information online were significant concerns raised by patients regarding social media use for health information [34,36,37].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [34]

  • Patients with rare genetic diseases use social media to overcome boundaries including geographical dispersion, limited medical expertise, and connection with peers.

    “Patients with rare genetic diseases use social media to overcome the same boundaries that were found by parents in this review, including geographical dispersion, limited medical expertise, and connection with peers [34].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [34]

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

1 of the 81 references couldn’t be matched to a known paper.

Research works printed but not linked: 3

  1. [56]Saldana J The Coding Manual for Qualitative Researchers 2016 London SAGE 339
  2. [67]General USS Social Media and Youth Mental Health: the U.S. Surgeon General's Advisory 2023 Washington, DC US Department of Health and Human Services 2023 37721985
  3. [78]Erikson EH Identity, Youth, and Crisis. 1st Edition 1968 New York W. W. Norton 336

Cited by

Sorted by citations

Related

Authors
Pearce, E. E., Majid, A., Brown, T., Shepherd, R. F., Rising, C., Wilsnack, C., Thompson, A. S., Gilkey, M. B., Ribisl, K. M., Lazard, A. J., Han, P. K., Werner-Lin, A., Hutson, S. P., & Savage, S. A.
Affiliations
  • National Institutes of Health (US)
  • University of North Carolina at Chapel Hill (US)
Corresponding author
Pearce, Emily Eidenier
ORCID
Venue
JMIR Formative Research
Publisher
JMIR Publications Inc.
Published
2024-12-16
Volume
8
Pages
e64343
ISSN
2561-326X (ISSN-L)
DOI
10.2196/64343
PMC
PMC11686027
OpenAlex
W4403552644
Cited by
2
References
81
Citations by year
2025: 2
FWCI
1.17
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • JMIR Formative Research (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
  • National Institutes of Health
  • National Cancer Institute
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Social Sciences › Health › Social Media in Health Education
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
Keywords
telomere biology disorders, online support, online information seeking, social media, caregivers, rare genetic disorders, psychosocial support, privacy concerns, disclosure, clinical uncertainty, online communities, patient experience, patient-provider relationship, genetic testing, cancer risk, information overload, patient empowerment, patient engagement
MeSH terms
Adult, Aged, Female, Humans, Male, Middle Aged, Social Support, Telomere, Caregivers, Internet, Qualitative Research, Information Seeking Behavior

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review