YouTube as a resource for evaluating the unmet needs of caregivers of stroke survivors

Abstract

Content produced by caregivers of stroke survivors on the online video-sharing platform YouTube may be a good source of knowledge regarding caregivers’ unmet needs. We aimed to examine the content, quantity and quality of YouTube videos that target and discuss the needs and concerns of caregivers of stroke survivors. YouTube was systematically searched using six search strings, and the first 20 videos retrieved from each search were screened against the inclusion criteria. A pre-determined coding schedule was used to report the rate of unmet needs in each video. Twenty-six videos were included in the analysis. In total, 291 unmet needs were reported by caregivers of stroke survivors, an average of 11.2 unmet needs per video. The most common unmet needs domain was ‘Impact of Caregiving on Daily Activities’ (44%). Most videos were developed in the United States (61.5%) and featured spouses of stroke survivors (65.47%). 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 and may be used as an additional resource for stroke services to support caregivers.

The Effectiveness of Social Media Support for Caregivers: A Systematic Review

“…By using a purpose sampling, the participants' choices in terms of gender, age, education level and duration of care varied widely, ensuring the diversity of the sample and contributing to the in-depth and extensive exploration of caregivers' experience needs [39] . Similarly, an online survey that examined caregivers' unmet needs had the highest changes in daily living that affected caregivers [40] . Among the factors affecting daily life activities of caregivers (n = 26), 76.9% were influenced by lifestyle and schedule, 65.4% by balancing their own needs and care, and 46.2% by assisting patients to deal with daily needs, such as preparing food, 38.5 % by coping with an impact on work and 34.6 % by helping to take care of own physical and mental health.…”

“…Financial needs are the main needs that affect the daily life activities of caregivers, because psychological functions are related to material items, so economic pressure may increase the burden of caregivers [40] . At the same time, the lack of funds for equipment makes it difficult to care for patients [37] .…”

“…At the same time, the lack of funds for equipment makes it difficult to care for patients [37] . 92.3% of caregivers (n = 26) reported economic needs, and income loss of caregivers and patients was the main cause of economic problems, followed by treatment costs and transportation costs [40] . Some caregivers also require additional needs, such as meals and transportation [28] .…”

“…14.4% of caregivers (n = 38) used SM to request information on symptoms, treatment options and costs associated with the illness [42] . 57.7% of caregivers (n = 26) hope to know what will happen in the future, how to manage the illness of patient and how to provide care for the patient, and 46.2% of caregivers hope to know how to access health services to provide comprehensive care for the patient [40] . There are also caregivers who describe them lack of knowledge of patient care, making it difficult to provide comfortable care for patients [37] .…”

“…Caregivers recorded an emotional breakdown during a 2-year care experience and described their needs [40] . In addition, the caregiver feels ignored, lonely or disappointed, because others do not understand their feelings as a caregiver.…”