“Doctors can read about it, they can know about it, but they've never lived with it”: How parents use social media throughout the diagnostic odyssey
Open accessAbstract
Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post‐diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi‐structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team‐based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the “right” community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
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.
Integrity signals
Registry
Cites
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.
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?
Most parents and caregivers discussed online information with health care providers, but some experienced negative responses.
“Most parents and caregivers discussed information they had found online with their health care providers; however, some experienced negative responses from health care professionals [14,15,19,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Theme 2) state that most parents had not discussed their social media use with healthcare providers—the opposite of the claim that most discussed information found online. The passage reports that a few parents perceived a negative stigma, but does not describe them receiving negative responses from providers. (LLM, conf=0.90)
Checked by a reasoning model — may be wrong.
Experimental — accuracy not yet measuredFacebook is the most commonly used social media platform among parents and caregivers of children with rare genetic diseases.
“especially Facebook (Meta Platforms, Inc), particularly the group function.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Sample characteristics) report that all 14 parents used Facebook, more than any other platform, and that groups related to their child’s symptoms were primarily on Facebook. The study concerns parents of children with undiagnosed diseases, so it does not establish that Facebook is the most commonly used platform among parents and caregivers of children with rare genetic diseases generally. (LLM, conf=0.86)
Experimental — accuracy not yet measuredFacebook was found to have the largest proportion of support groups compared to other sites.
“Facebook was the most commonly used platform and was found to have the largest proportion of support groups compared to other sites [14,16,21].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Sample characteristics) say all 14 parents used Facebook and that groups related to their child’s symptoms were primarily on Facebook. This supports Facebook’s prominence among the parents interviewed, but the paper does not compare the proportions of support groups hosted across sites. (LLM, conf=0.85)
Experimental — accuracy not yet measuredGroup members were sharing information on treatments, including medication, procedures, novel treatments, and alternative therapies.
“Overall, 3 studies [14,24,25] noted that group members were sharing information on treatments, including medication, procedures, novel treatments, and alternative therapies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Theme 2; page not provided) describe group members sharing information about seizure medications, CBD, supplements, and advanced or alternative treatments. Our copy does not show group members sharing information about medical procedures, so that part of the list is not supported by this source. (LLM, conf=0.86)
Experimental — accuracy not yet measuredMost studies found that between 80% and 100% of parents are engaging in online support groups.
“Most studies found that between 80% and 100% of parents are engaging in online support groups [14,16,19,20].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Sample characteristics) report that 13 of 14 interviewed parents (93%) belonged to a social media group related to their child’s symptoms, which falls within the claimed range. This paper provides one study’s finding; it does not establish that most studies found rates between 80% and 100%. (LLM, conf=0.86)
Experimental — accuracy not yet measured
Parents are more comfortable joining and posting in private groups.
“Two studies [14,20] that reviewed parental privacy concerns showed that parents are more comfortable joining and posting in private groups”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
In Results, Theme 4, parents were generally more comfortable posting in smaller, targeted groups with tighter privacy settings. The same passage says group privacy settings did not seem to affect whether they would join, so the claim about being more comfortable joining private groups is not supported. (LLM, conf=0.91)
Experimental — accuracy not yet measuredParents prefer to receive medical and prognostic information from clinicians.
“On the other hand, 2 studies [14,22] found parents prefer to receive medical and prognostic information from clinicians.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
In Results, Theme 2 (page unavailable), the paper says most parents preferred medical information from providers because they considered it more reliable. It does not establish the same preference for prognostic information; the Introduction instead describes families learning about a child’s future and prognosis from other families. (LLM, conf=0.88)
Experimental — accuracy not yet measured60% of parents were uncomfortable sharing in public groups.
“and 60% of them were uncomfortable sharing in public groups”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
In Results, Theme 4 (page unavailable), the paper says parents were generally more comfortable posting in smaller groups with tighter privacy settings. It does not report that 60% were uncomfortable sharing in public groups; the percentage and that specific characterization are unsupported. (LLM, conf=0.87)
Experimental — accuracy not yet measuredMost respondents in one study did not discuss social media use with health care professionals due to negative stigma.
“One study [14] noted that most of their respondents did not discuss social media use with health care professionals due to the negative stigma associated with using social media for information.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results (Theme 2; page not supplied) say most parents had not discussed their social media use with healthcare providers. But only a few mentioned negative stigma, while others gave different views or described embarrassment; the paper does not say stigma was the reason most did not discuss it. (LLM, conf=0.90)
Experimental — accuracy not yet measuredParents whose children were undiagnosed or had very rare diseases often struggled to find the right groups to connect with, and feelings of isolation remained.
“Parents whose children were undiagnosed or had very rare diseases often struggled to find the right groups to connect with, and so feelings of isolation remained [14].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results, Theme 1 (page unavailable), describe parents of undiagnosed children struggling to find suitable groups and experiencing isolation. The claim also extends that difficulty and continuing isolation to parents of children with very rare diagnosed diseases; the same section instead describes recently diagnosed parents finding diagnosis-specific groups and gaining a sense of belonging. (LLM, conf=0.88)
Experimental — accuracy not yet measuredNine included studies collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.
“9 studies [14-16,18,19,22-24,26] collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Around 5 included study cohorts were based in the United States, 1 in Canada, and 2 in Europe.
“Around 5 [14-16,24,26] study cohorts were based in the United States, 1 [22] in Canada, and 2 [19,23] in Europe.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Connecting with people outside the family who share similar medical experiences or symptoms can provide emotional support and practical advice.
“Connecting with people outside the family who share similar medical experiences or symptoms can provide emotional support and practical advice, which are often invaluable for families navigating the complexities of rare diseases [14].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Instagram was used by over half of parents, but was also used for personal story-sharing accounts rather than discussion forums.
“One study [14] reported that Instagram was used by over half of parents, but was also used for personal story-sharing accounts rather than discussion forums.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Almost half of the included studies reported that parents were sharing their child's personal experiences and stories within these groups.
“Almost half of the included studies reported that parents were sharing their child’s personal experiences and stories within these groups [14,18,20,21,24].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents sought or shared practical information on caring for a child with a rare genetic disease in 9 included studies.
“Practical information on caring for a child with a rare genetic disease was sought or shared by parents in 9 [14-16,18,21-25] of the included studies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The rarity of some diseases means providers cannot offer adequate information on the diagnosis.
“Four studies [14,16,23,26] also highlighted that the rarity of some diseases means providers cannot offer adequate information on the diagnosis, and therefore, parents rely more heavily on online communication for information.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents may join several, more symptom-specific groups, but they sometimes feel like outsiders.
“In such situations, parents may join several, more symptom-specific groups, but they sometimes feel like outsiders [14].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Sometimes the urgent need for information can override privacy concerns.
“However, 1 study [14] highlighted that sometimes the urgent need for information can override these privacy concerns.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Personal experiences shared on social media with positive outcomes provided parents with hope for their own child in the future.
“Personal experiences shared on social media with positive outcomes also provided parents with hope for their own child in the future [14,18,22].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents of children with rare diseases rely more heavily on online communication for information.
“Four studies [14,16,23,26] also highlighted that the rarity of some diseases means providers cannot offer adequate information on the diagnosis, and therefore, parents rely more heavily on online communication for information.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Emotional support seeking and connection with other families was a main reason parents joined online support networks, found in 7 reviewed studies.
“Another main reason for joining online support networks was emotional support seeking and connection with other families, as found in 7 [14-16,19,20,23,26] of the reviewed studies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Engagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children.
“However, several studies also noted that engagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children [14,16,19,22,23,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Social isolation is common among parents of children with rare genetic diseases, especially before diagnosis.
“Social isolation is common among parents of children with rare genetic diseases, especially when they have not yet received a diagnosis, as highlighted by 3 studies [14,15,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents are able to access information via social media wherever and whenever they need it and receive faster answers online than from health care providers.
“Three studies [14,15,22] brought focus to the accessibility of information via social media, with parents able to access it wherever and whenever they need it and receive faster answers to questions online than if they awaited input from health care providers.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents recognized the emotional toll of social media and are careful about what they share to prevent troubling other families.
“One study [14] stated that parents recognized the emotional toll of social media and are careful about what they share to prevent troubling other families.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Parents acknowledged balancing consuming too much irrelevant information with staying up to date to avoid missing important information.
“Parents acknowledged the balance of consuming too much information that may not be relevant while ensuring that they stay up to date with posts to avoid missing important information [14].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
Private groups had triple the members.
“with private groups having triple the members.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [14]
The Results section, Theme 4 (page unavailable), says parents were more comfortable posting in smaller, more targeted groups with tighter privacy settings. It does not report group membership counts or compare private groups’ membership with other groups; searches for a threefold membership difference found no such passage. (LLM, conf=0.76)
Experimental — accuracy not yet measured
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
Basics of Qualitative Research: Grounded Theory Procedures and Techniques.
Ellis, C., Strauss, A., & Corbin, J. M. (1992) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2074814 · Cited by 29,279 · see citing works
The Impact of Social Media on Children, Adolescents, and Families
O'Keeffe, G. S., Clarke-Pearson, K., & Council on Communications and Media (2011) · Pediatrics · doi:10.1542/peds.2011-0054 · Cited by 1,987 · see citing works
Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database
Nguengang Wakap, S., Lambert, D. M., Olry, A., Rodwell, C., Gueydan, C., Lanneau, V., Murphy, D., Le Cam, Y., & Rath, A. (2020) · European Journal of Human Genetics · doi:10.1038/s41431-019-0508-0 · Cited by 1,752 · see citing works
van Uden‐Kraan, C. F., Drossaert, C. H. C., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. F. J. (2008) · Qualitative Health Research · doi:10.1177/1049732307313429 · Cited by 465 · see citing works
Effect of Genetic Diagnosis on Patients with Previously Undiagnosed Disease
Splinter, K., Adams, D. R., Bacino, C. A., Bellen, H. J., Bernstein, J. A., Cheatle-Jarvela, A. M., Eng, C. M., Esteves, C., Gahl, W. A., Hamid, R., et al. (2018) · New England Journal of Medicine · doi:10.1056/nejmoa1714458 · Cited by 359 · see citing works
Self-citationThe supportive care needs of parents caring for a child with a rare disease: A scoping review
Pelentsov, L. J., Laws, T. A., & Esterman, A. J. (2015) · Disability and Health Journal · doi:10.1016/j.dhjo.2015.03.009 · Cited by 312 · see citing works
Courbier, S., Dimond, R., & Bros‐Facer, V. (2019) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-019-1123-4 · Cited by 145 · see citing works
DeHoff, B. A., Staten, L. K., Rodgers, R. C., & Denne, S. C. (2016) · Journal of Medical Internet Research · doi:10.2196/jmir.6722 · Cited by 143 · see citing works
Rosenthal, E. T., Biesecker, L. G., & Biesecker, B. B. (2001) · American Journal of Medical Genetics · doi:10.1002/ajmg.1527 · Cited by 120 · see citing works
Gundersen, T. (2010) · Sociology of Health & Illness · doi:10.1111/j.1467-9566.2010.01277.x · Cited by 96 · see citing works
Jacobs, R., Boyd, L., Brennan, K., Sinha, C., & Giuliani, S. (2016) · Journal of Pediatric Surgery · doi:10.1016/j.jpedsurg.2016.07.008 · Cited by 91 · see citing works
The support needs of parents having a child with a chronic kidney disease: a focus group study
Geense, W. W., van Gaal, B. G. I., Knoll, J. L., Cornelissen, E. A. M., & van Achterberg, T. (2017) · Child Care Health and Development · doi:10.1111/cch.12476 · Cited by 91 · see citing works
Lipinski, S. E., Lipinski, M. J., Biesecker, L. G., & Biesecker, B. B. (2006) · American Journal of Medical Genetics Part C Seminars in Medical Genetics · doi:10.1002/ajmg.c.30107 · Cited by 86 · see citing works
McConkie‐Rosell, A., Hooper, S. R., Peña, L., Schoch, K., Spillmann, R. C., Jiang, Y., Cope, H., Undiagnosed Diseases Network, Palmer, C. G. S., & Shashi, V. (2018) · Journal of Genetic Counseling · doi:10.1007/s10897-017-0193-5 · Cited by 77 · see citing works
Self-citationLiving Without a Diagnosis: The Parental Experience
Lewis, C., Skirton, H., & Jones, R. (2010) · Genetic Testing and Molecular Biomarkers · doi:10.1089/gtmb.2010.0061 · Cited by 73 · cited 1× · see citing works
“…clinical decision- making, and also limited social support from other patients and families who have undergone similar medical challenges (Germeni et al., 2018; Lewis et al., 2010; Lipinski et al., 2006; Pelentsov et al., 2015; Rosenthal et al., 2001; Skinner & Schaffer, 2006; Yanes et al., 2017).”
BackgroundHow Parents Search, Interpret, and Evaluate Genetic Information Obtained from the Internet
Roche, M. I., & Skinner, D. (2008) · Journal of Genetic Counseling · doi:10.1007/s10897-008-9198-4 · Cited by 52 · see citing works
Ethics and Privacy in Social Media Research for Mental Health
Nicholas, J., Onie, S., & Larsen, M. E. (2020) · Current Psychiatry Reports · doi:10.1007/s11920-020-01205-9 · Cited by 47 · see citing works
Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition
Yanes, T., Humphreys, L., McInerney-Leo, A. M., & Biesecker, B. B. (2016) · Journal of Genetic Counseling · doi:10.1007/s10897-016-0060-9 · Cited by 46 · see citing works
Dhar, V. K., Kim, Y., Graff, J. T., Jung, A. D., Garrett, J., Dick, L. E., Harris, J., & Shah, S. A. (2017) · Surgery · doi:10.1016/j.surg.2017.09.056 · Cited by 46 · see citing works
Germeni, E., Vallini, I., Bianchetti, M. G., & Schulz, P. J. (2018) · European Journal of Pediatrics · doi:10.1007/s00431-017-3085-7 · Cited by 46 · see citing works
Parental Sharing on the Internet
Keith, B., & Steinberg, S. (2017) · Archives of Pediatrics and Adolescent Medicine · doi:10.1001/jamapediatrics.2016.5059 · Cited by 46 · see citing works
Barton, K. S., Wingerson, A., Barzilay, J. R., & Tabor, H. K. (2019) · Journal of Community Genetics · doi:10.1007/s12687-018-0400-6 · Cited by 44 · see citing works
Self-citationFamilies and Genetic Diagnoses in the Genomic and Internet Age
Skinner, D., & Schaffer, R. (2006) · Infants & Young Children · doi:10.1097/00001163-200601000-00003 · Cited by 38 · see citing works
Stub, T., Quandt, S. A., Kristoffersen, A. E., Jong, M. C., & Arcury, T. A. (2021) · BMC Complementary Medicine and Therapies · doi:10.1186/s12906-021-03253-x · Cited by 34 · see citing works
Children’s Reactions to Media Coverage of War
Pfefferbaum, B. J., Tucker, P. M., Varma, V., Varma, Y., Nitiéma, P., & Newman, E. (2020) · Current Psychiatry Reports · doi:10.1007/s11920-020-01165-0 · Cited by 32 · see citing works
Complementary and integrative medicine in epilepsy: What patients and physicians perceive
Asadi‐Pooya, A. A., Homayoun, M., & Sharifi, S. (2019) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2019.106545 · Cited by 23 · see citing works
A New Approach to Rare Diseases of Children: The Undiagnosed Diseases Network
Reuter, C. M., Brimble, E., DeFilippo, C., Dries, A. M., Enns, G. M., Ashley, E. A., Bernstein, J. A., Fisher, P. G., & Wheeler, M. T. (2018) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2017.12.029 · Cited by 15 · see citing works
Self-citationAkré, C., Polvinen, J., Ullrich, N. J., & Rich, M. (2018) · Journal of Genetic Counseling · doi:10.1007/s10897-018-0213-0 · Cited by 12 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Throckmorton‐Belzer, L., Wright, S. M., Goodwin, E. J., Singh, M. N., & Carter, B. S. (2022) · Children · doi:10.3390/children9070933 · Cited by 69 · see citing works
Parenting Information on Social Media: Systematic Literature Review
Mertens, E., Ye, G., Beuckels, E., & Hudders, L. (2024) · JMIR Pediatrics and Parenting · doi:10.2196/55372 · Cited by 59 · see citing works
Genome sequencing as a first-line diagnostic test for hospitalized infants
Bowling, K. M., Thompson, M. L., Finnila, C. R., Hiatt, S. M., Latner, D. R., Amaral, M. D., Lawlor, J. M. J., East, K. M., Cochran, M. E., Greve, V., et al. (2021) · Genetics in Medicine · doi:10.1016/j.gim.2021.11.020 · Cited by 56 · see citing works
Halley, M. C., Young, J. L., Fernández, L., Kohler, J. N., Undiagnosed Diseases Network, Bernstein, J. A., Wheeler, M. T., & Tabor, H. K. (2022) · American Journal of Medical Genetics Part A · doi:10.1002/ajmg.a.62619 · Cited by 40 · see citing works
Self-citationSocial support in a parenting Facebook group during the COVID ‐19 pandemic
Hooper, A. L., Schweiker, C., & Kerch, C. J. (2022) · Family Relations · doi:10.1111/fare.12804 · Cited by 21 · see citing works
Yabumoto, M., Miller, E. G., Rao, A., Tabor, H. K., Ormond, K. E., & Halley, M. C. (2022) · Journal of Medical Internet Research · doi:10.2196/42084 · Cited by 15 · see citing works
Self-citationDoyle, T. A., Vershaw, S. L., Conboy, E., & Halverson, C. M. E. (2024) · JMIR Human Factors · doi:10.2196/57833 · Cited by 14 · see citing works
Exploring the role of digital tools in rare disease management: An interview‐based study
Chang, A., Huang, S. D., Benjamin, D. J., Schmidt, J., Palmer, C. G. S., & Garrison, N. A. (2024) · Journal of Genetic Counseling · doi:10.1002/jgc4.1908 · Cited by 13 · see citing works
Social media use by patients with hypermobile Ehlers–Danlos syndrome
Halverson, C. M. E., Doyle, T. A., & Vershaw, S. L. (2024) · Molecular Genetics & Genomic Medicine · doi:10.1002/mgg3.2467 · Cited by 10 · see citing works
Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review
Davis, C., Bogaert, L., Powell, J., & Low, K. (2025) · Journal of Medical Internet Research · doi:10.2196/77087 · Cited by 8 · see citing works
“Around 11 articles [14-16,18-25] were A review of the reference lists of included articles by both authors identified 1 additional article [26], leading to a total of 12 included articles [14-16 , 18-26”
InfluentialHalley, M. C., Young, J. L., Tang, C., Mintz, K. T., Lucas-Griffin, S., Maghiro, A., Ashley, E. A., Tabor, H. K., Acosta, M. T., Adam, M. P., et al. (2023) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2023.113537 · Cited by 8 · see citing works
Self-citationMothers’ lived experience of caring for children with inborn errors of amino acid metabolism
Shirdelzade, S., Ramezani, M., Eshraghi, P., & Heydari, A. (2023) · BMC Pediatrics · doi:10.1186/s12887-023-03946-x · Cited by 7 · see citing works
Rare disease narratives on social media: A content analysis
Park, H. J., Scott, C., Smith, H. S., & Wojcik, M. H. (2025) · Genetics in Medicine Open · doi:10.1016/j.gimo.2025.102844 · Cited by 6 · see citing works
Legg, D., Meisel, A., Stein, M., Gerischer, L. M., Herdick, M. L., Krüger, D., Mergenthaler, P., Masanneck, L., & Lehnerer, S. (2024) · Frontiers in Neurology · doi:10.3389/fneur.2024.1474347 · Cited by 5 · see citing works
Low, K. J., Treneman‐Evans, G., Wynn, S. L., Ingram, J. C., & powell, J. A. (2025) · JMIR Pediatrics and Parenting · doi:10.2196/76526 · Cited by 3 · see citing works
Dayimu, N., Leng, L., & Jilili, M. (2026) · BMC Psychology · doi:10.1186/s40359-026-04318-7 · Cited by 2 · see citing works
Maceda, E. B. G., Abadingo, M. E., Asor, B. B., Cases, R. K., Supan, R. J. G., Anarna, K. S., Libo-on, P. C. A., Vesagas, T. D. C., & Ma-Am Joy R. Tumulak, M. (2024) · Acta Medica Philippina · doi:10.47895/amp.vi0.8737 · Cited by 1 · see citing works
Green, K. S., Johnson, A., Brophy‐Herb, H. E., Cook, J. L., Barron, C. C., Kim, L., Perkins, H. A., Stacks, A. M., Vallotton, C. D., & Borelli, J. L. (2025) · Journal of Early Childhood Research · doi:10.1177/1476718x251318890 · Cited by 1 · see citing works
Abouhala, S., del Rosario, M., Holm, I. A., & Wojcik, M. H. (2025) · Genetics in Medicine Open · doi:10.1016/j.gimo.2025.103490 · Cited by 1 · see citing works
Schwalk, D., Ali, A., Chandereng, T., Regier, D. S., & Lyon, M. E. (2026) · Disabilities · doi:10.3390/disabilities6040071 · Cited by 1 · see citing works
Delgama, D., Galvin, K. L., Gray, K. M., & Leigh, J. (2025) · Cochlear Implants International · doi:10.1080/14670100.2025.2520674 · Cited by 1 · see citing works
Mintz, K. T., Altamirano, E. N., Halley, M. C., Barton, K. S., Cho, M. K., Bernstein, J. A., Carter, J. N., Abdenur, J. E., Acosta, M. T., Adams, D. R., et al. (2026) · Genetics in Medicine · doi:10.1016/j.gim.2026.102663 · Cited by 1 · see citing works
Self-citationChavez, M. L. L., & Manaois, J. G. (2025) · INTERNATIONAL JOURNAL OF SOCIAL SCIENCE AND EDUCATION RESEARCH STUDIES · doi:10.55677/ijssers/v05i04y2025-02
Redes sociodigitales y calidad de vida en los pacientes con enfermedades raras
Campos, J. D., & Brun, M. P. (2025) · INDEX COMUNICACIÓN · doi:10.62008/ixc/15/02redes
Integrating rare diseases into Africa’s digital health strategies
Gamba, S. F., & Magili, M. (2025) · PLOS Digital Health · doi:10.1371/journal.pdig.0001073
Halverson, C. M. E., Vershaw, S. L., Francomano, C. A., & Doyle, T. A. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-109681
Shirdelzade, S., Ramezani, M., Eshraghi, P., & Heydari, A. (2023) · Figshare · doi:10.6084/m9.figshare.23354269
Smith, A., & Vassar, R. L. (2025) · Annals of the Child Neurology Society · doi:10.1002/cns3.70048
Integrative Literature Review on the Lived Experiences of Parents of Children with a Rare Disease
Guillari, A., Ballfusha, K., Palazzo, C., Martino, M. D., & Giordano, V. (2026) · Healthcare · doi:10.3390/healthcare14111437
Soriano‐Martin, P. J., Ruiz‐González, C., Alias-Castillo, A. J., Román, P., Martinez‐Ortigosa, A., Bertini-Pérez, D., & Font‐Jiménez, I. (2026) · Journal of Nursing Management · doi:10.1155/jonm/6754802
Exploring autism parenting, social support, and stigma in a Reddit community
Harrell-Webber, A., Rohde, J. A., & Wright, K. B. (2026) · Frontiers in Communication · doi:10.3389/fcomm.2026.1813037
Smith, M., Wang, Q., Pierce, K., Marsilio, K., Wakefield, C. E., Howell, K. B., Palmer, E. E., & Kelada, L. (2026) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2026.111185
Wetzel, S., Mann, S. P., & Rosenberger, F. A. (2026) · Journal of Inherited Metabolic Disease · doi:10.1002/jimd.70236
Burgun, A., Khnaisser, C., Dault, R., & Éthier, J. (2026) · PLOS Digital Health · doi:10.1371/journal.pdig.0001240
Kurtça, V. E. (2026) · Journal of Technology in Behavioral Science · doi:10.1007/s41347-026-00738-9
- Authors
- Deuitch, N. T., Beckman, E., Halley, M. C., Young, J. L., Reuter, C. M., Kohler, J., Bernstein, J. A., Wheeler, M. T., Undiagnosed Diseases Network, Ormond, K. E., & Tabor, H. K.
- Affiliations
- Stanford Medicine (US)
- Corresponding author
- Tabor, Holly K.
- ORCID
- Venue
- Journal of Genetic Counseling
- Publisher
- Wiley
- Published
- 2021-06-06
- Volume
- 30
- Issue
- 6
- Pages
- 1707-1718
- ISSN
- 1059-7700 (ISSN-L)
- 1573-3599
- PMC
- PMC8777467
- OpenAlex
- W3170966150
- Cited by
- 34
- References
- 28
- Citations by year
- 2026: 9 · 2025: 10 · 2024: 6 · 2023: 3 · 2022: 4 · 2021: 2
- FWCI
- 4.21
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Genetic Counseling (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Society of Genetic Counselors
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genomics and Rare Diseases
- Keywords
- social media use, diagnostic odyssey, undiagnosed disease, parents of children, Undiagnosed Diseases Network, online communities, social support, emotional support, information seeking, privacy concerns, data sharing, rare diseases
- MeSH terms
- Child, Family, Humans, Parents, Social Support, Sequence Analysis, Qualitative Research, Social Media
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
