Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study
Open accessPublished version of a preprint
Abstract
BACKGROUND: Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored. OBJECTIVE: This study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI. METHODS: A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada. Interviews were used to explore each caregiver's views on the applicability of IBTs in supporting their caregiving needs. The interviews were transcribed verbatim and thematically analyzed. RESULTS: A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving (such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving), OI medical information seeking, and OI social networking. However, they also revealed concerns about the health consequences of IBT use and the quality of IBT content. Concerns regarding IBTs varied somewhat with caregivers' geographies. Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving. CONCLUSIONS: Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. OI caregivers use IBTs to overcome some of these challenges and to support their specific caregiving needs. These findings contribute to the paucity of knowledge by offering varied IBT strategies to support caregiving activities, which may be beneficial for other caregivers. Participants' suggestions for IBT services can inform the development of new resources for OI caregivers and potentially for other caregivers of children living with rare conditions.
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The group function is a significant reason for Facebook's popularity among parents and caregivers.
“A significant reason for Facebook’s popularity was the group function, allowing communities to create online spaces to discuss and share information [19,22].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
In Results, under “Facilitating Osteogenesis Imperfecta Social Networking” (page not provided), caregivers describe using social media to meet other OI families and share care advice; one mother calls the OI Parents Facebook group a major help. This supports the value of a group space for these caregivers, but the paper does not establish that the group function is a significant reason for Facebook’s popularity among parents and caregivers generally. (LLM, conf=0.82)
Experimental — accuracy not yet measuredDay-to-day care information and guidance were often shared, such as the practicalities of medication administration.
“Day-to-day care information and guidance were often shared, such as the practicalities of medication administration [22,24].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
The Results section reports that OI caregivers exchanged practical day-to-day care advice online, including tips after fractures and how to splint a fracture (page not specified). It does not describe sharing guidance on the practicalities of medication administration. (LLM, conf=0.85)
Experimental — accuracy not yet measuredParents 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 [22]
The Results section (page unavailable) says OI caregivers could get answers from online caregivers faster than by seeking input from health care providers, particularly for practical questions such as splinting a fracture. It describes social media as a source of information, but does not establish that parents can access it wherever and whenever they need it; the Discussion notes that its usefulness depends on internet access. (LLM, conf=0.84)
Experimental — accuracy not yet measuredSocial media groups served as a powerful space for emotional and social support among parents, with some developing offline relationships.
“Social media groups also served as a powerful space for emotional and social support among parents, so much so that some developed offline relationships [22].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
The Results section, under “Facilitating Osteogenesis Imperfecta Social Networking” (page unavailable), reports that caregivers—primarily mothers—formed strong connections through OI social media, and one mother described the OI Parents Facebook group as a major help. This supports the social-support claim, but the passages do not say that those connections became offline relationships. (LLM, conf=0.86)
Experimental — accuracy not yet measuredEngagement 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 [22]
The Results section (page unavailable) reports concern about negative mental-health effects of too much screen time, including a mother who stopped following an OI parents’ group because its posts felt all-consuming. It also says caregivers often encountered worst-case scenarios online that did not apply to their children. The paper does not specifically link information overload or witnessing other children’s negative outcomes to increased parental anxiety. (LLM, conf=0.83)
Experimental — accuracy not yet measured
Over half of respondents in two studies viewed online support groups as positive.
“The overall impact of online support groups was assessed by 2 studies [16,22], both of which reported that over half of respondents viewed them as positive.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
The Results section reports that 14 of 18 caregivers had a generally positive view of internet-based technologies used in caring for a child with osteogenesis imperfecta. It also describes favorable experiences with online groups, but the 14-of-18 figure concerns technologies broadly, not respondents’ assessment of online support groups specifically. This verdict addresses only the cited Castro et al. study, not the other study in the sentence. (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 [22]
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 [22]
Four included studies commented on the sharing of information by parents via these groups.
“Not only are parents accessing information via these groups, but also 4 studies [18,21,22,24] commented on the sharing of information.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
YouTube was associated mainly with personal story sharing.
“YouTube, as mentioned in 3 studies [16,22,26], was associated mainly with personal story sharing”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
Parents find YouTube videos hopeful and inspirational.
“with 1 study [22] reporting that parents find YouTube videos hopeful and inspirational.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
Some caregivers were more interested in answering others' questions than having their own answered.
“Some caregivers were more interested in answering others’ questions than having their own answered [22].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
Parents 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 [22]
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 [22]
Parents use social media for medical information finding.
“Eight studies [16,20-26] showed parental use of social media for medical information finding.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
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 [22]
Two included studies used open questions with some inferred relation to outcomes.
“Further, 2 studies [22,26] used open questions, but with some inferred relation to outcomes.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [22]
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- Authors
- Castro, A. R., Chougui, K., Bilodeau, C., & Tsimicalis, A.
- Affiliations
- Shriners Hospitals for Children - Canada (CA)
- Corresponding author
- Tsimicalis, Argerie
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2019-12-18
- Volume
- 21
- Issue
- 12
- Pages
- e15924
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC6939279
- OpenAlex
- W2981949648
- Cited by
- 23
- References
- 33
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 6 · 2023: 6 · 2022: 3 · 2021: 1 · 2020: 1
- FWCI
- 1.70
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- eScholarship@McGill (McGill) (submittedVersion, cc-by)
- Funders
- Canadian Institutes of Health Research
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- osteogenesis imperfecta, family caregivers, internet technologies, caregiver support, health information seeking, social networking, social isolation, caregiver distress, online health information quality
- MeSH terms
- Adolescent, Adult, Canada, Child, Child, Preschool, Female, Humans, Infant, Infant, Newborn, Interviews as Topic, Male, Middle Aged, Osteogenesis Imperfecta, Self Care, Caregivers, Internet, Young Adult
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