Previously submitted to: JMIR Rehabilitation and Assistive Technologies (no longer under consideration since Aug 27, 2018)
Date Submitted: May 15, 2018
Open Peer Review Period: May 17, 2018 - Aug 15, 2018
(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Warning: This is an author submission that is not peer-reviewed or edited.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.
The unmet needs of caregivers of stroke survivors: A review of the content of YouTube videos
Background:
Content produced by caregivers of stroke survivors on online video sharing platforms such as YouTube may be a good source of knowledge regarding caregivers’ unmet needs and caregiving experiences.
Objective:
We aimed to examine content, quantity and quality of YouTube videos that specifically target and discuss the needs and concerns of caregivers of stroke survivors.
Methods:
YouTube was systematically searched using six select search strings. The first 20 videos retrieved from each search string were screened against the eligibility criteria and included if they were: developed by either adult caregivers of stroke survivors and focused on caregivers’ needs and concerns; or professional organisations and depicted first-hand testimonials of the needs and concerns of caregivers of stroke survivors. A pre-determined coding schedule was used to report the rate of unmet needs in each video: (1) Impact of Caregiving on Daily Activities; (2) Relationship; (3) Emotional and Psychological; (4) Comprehensive Stroke care; (5) Information; and (6) Spirituality. General video characteristics were also reported.
Results:
Of the 132 videos screened, 26 individual videos were included in the analysis. Most videos were developed in the USA (61.5%) and featured spouses of stroke survivors (65.47%). The most common types of videos were video blogs (vlogs) in which the main content featured the caregiver(s) diarising their daily thoughts and feelings (n=16, 48.5%). In total, 291 unmet needs were reported by caregivers of stroke survivors, with an average of 11.2 unmet needs per video. The most common unmet needs domain was ‘Impact of Caregiving on Daily Activities’ which made up 44% of the unmet needs reported. The most frequently reported sub-category was ‘Financial Impact’, appearing 24 times in 26 videos (92.3%).
Conclusions:
Content produced by caregivers of stroke survivors on YouTube may be used as a tool for caregivers to provide and receive support through online communication. YouTube videos offer insight into the unmet needs of caregivers of stroke survivors across countries and healthcare systems, and may be used as an additional resource for stroke services to disseminate health information and support to caregivers. Further research is needed to investigate other online platforms to address the unmet needs of caregivers of stroke survivors.
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