ArticleJournal of medical Internet research2019
Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.
Article in Journal of medical Internet research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
13 citing papers in PubMed, 24 citations in OpenAlex.
- Parental needs and experiences with e-Health applications in chronic pediatric care - a scoping review.BMC pediatrics · 2026Article
- Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study.JMIR human factors · 2026Article
- Transforming clinical trials in rare genetic diseases through telemedicine.Journal of community genetics · 2026Review
- Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review.Journal of medical Internet research · 2025Article
- The parental care-seeking behavior of children with osteogenesis imperfecta based on the Anderson's model: a qualitative study.BMC nursing · 2025Article
- Qualitative investigation of school experiences in children with osteogenesis imperfecta.Children's health care : journal of the Association for the Care of Children's Health · 2024Article
- Osteogenesis Imperfecta: A study of the patient journey in 13 European countries.Orphanet journal of rare diseases · 2024Article
- Caregiver Burden, Parenting Stress and Coping Strategies: The Experience of Parents of Children and Adolescents with Osteogenesis Imperfecta.Healthcare (Basel, Switzerland) · 2024Article
- Impact of caregiver's eHealth literacy, financial well-being, and mental health on quality of life of pediatric patients with osteogenesis imperfecta.Health and quality of life outcomes · 2023Article
- The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study.JMIR research protocols · 2023Article
- The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review.Orphanet journal of rare diseases · 2023Article
- Needs of people with rare diseases that can be supported by electronic resources: a scoping review.BMJ open · 2022Article
- Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
backgroundOsteogenesis 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.
objectiveThis study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI.
methodsA 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.
resultsA 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.
conclusionsFamily 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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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.