Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Aug 30, 2019
Open Peer Review Period: Aug 30, 2019 - Oct 15, 2019
Date Accepted: Oct 25, 2019
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: A Qualitative Descriptive Study
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 many challenges in providing care, which may include lacking access to information about the condition, feeling distressed, and experiencing social isolation. Internet-based technologies (IBT) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBT have not been explored.
Objective:
The objective of this study was to explore the views of OI caregivers on the uses of IBT to support them in caring for their children with brittle bones.
Methods:
A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montréal, Canada. Interviews were used to explore each caregiver’s views on the applicability of IBT in supporting their caregiving needs. The interviews were transcribed and thematically analyzed.
Results:
Eighteen caregivers participated. The caregivers shared that IBT was 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 the IBT content. Concerns regarding IBT varied somewhat with caregivers’ geographies. Caregivers offered suggestions and strategies for how IBT can be optimized for caregiving.
Conclusions:
Family caregivers of children with OI face many challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. The results of this study suggest that OI caregivers are using IBT to overcome some of these challenges and to support their unique caregiving needs. Findings from the present study contribute to the literature showcasing how caregivers of children with unique needs view IBT and use it to support their caregiving activities. Participants’ IBT strategies may prove beneficial to other caregivers. Participants’ suggestions for IBT services can inform the development of future IBT targeting similar populations. Clinical Trial: Not applicable.
Citation
The author of this paper has made a PDF available, but requires the user to login, or create an account.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.