Youtube How-to-Videos (HtV)
A Well-being Literacy Tool for Promoting Community Integration in Persons with
Disability
Alexander Libin
1,2,3,4
, Manon Maitland Schladen
1,2,4
, Inger Ljungberg
1,2
, Brenda Tsai
1,2,4
,
Ellen Danford
4
and Suzanne Groah
1,3
1
National Rehabilitation Hospital, Washington, DC, U.S.A.
2
MedStar Health Research Institute, Hyattsville, Maryland, U.S.A.
3
Department of Rehabilitation Medicine, Georgetown University, Washington, DC, U.S.A.
4
Well-Being Literacy, Multimedia Education & Psychosocial Research Program (WeLL), MedStar Health,
Washington, DC, U.S.A.
Keywords: Well-being Literacy, Vulnerable Populations, Multimedia Health Education, Youtube as a Social Network,
Self-management Skills, Community Integration.
Abstract: Social media’s power to connect and educate those with chronic conditions opens new avenues for
improving patient self-management. Recent studies have reported increased condition knowledge, patient
satisfaction, and compliance with treatment following social media involvement. A 5-year, consumer-
focused training project conducted at the Rehabilitation Research and Training Center on Spinal Cord Injury
aims to promote self-management skills in persons with SCI in areas of skin care, cardiometabolic risk
reduction, and obesity prevention. The training framework incorporates a YouTube-based, shared video
social network that connects participants with community-based resources necessary to achieve
independence, stability, and community integration. It is anticipated that findings from the project will
increase well-being literacy in individuals with SCI and enable them to self-manage health to function more
independently in their daily lives and integrating back into the community.
1 INTRODUCTION: HISTORY OF
SOCIAL MEDIA IN HEALTH
CARE
Social media has accumulated a powerful history of
promoting and illustrating various aspects of
medical self-management (Agenda, 2013). In recent
years, social media has blossomed to include sites
such as Facebook (2004), Twitter (2006), and
Tumblr (2007) (Shontell, 2012). A Pew Research
Report from August 2013 states that 72% of online
adults utilize social networking (Brenner, 2013). The
popularity of such sites has driven national
organizations, including the American Diabetes
Association and the Veterans Health Administration,
to advertise links to Facebook and Twitter on their
homepages to connect and educate online visitors
(American Diabetes Association, 2013; Veterans
Health Administration, 2013).
In 2012, Goldstein, et al. of the National Kidney
Disease Education Program (NKDEP) reported
successful use of social media to promote education
and health literacy in chronic kidney disease
patients. Over the course of one year, NKDEP’s
Facebook page, Make the Kidney Connection,
garnered 3500 “likes,” while NKDEP’s Twitter
handle gained 375 followers. Facebook was found
to be one of the top 15 referrers to the NKDEP
education webpage in 2012, thus exemplifying
successful social media promotion of healthcare
education (Goldstein et al., 2013).
Similarly a 2013 study by Van der Ejik et al.,
analyzed the use of Online Health Communities
(OHCs) in patient education and connections with
clinicians. The research presented case examples in
the Netherlands of a nationwide online Parkinson
community available to all interested in Parkinson
Disease and the ParkinsonNet community, a closed
professional network of both Parkinson patients and
providers. Over a 12-month period, 54% of both
Parkinson community members and ParkinsonNet
users posted comments or new content.
Implementation of OHCs and Personal Health
607
Libin A., Schladen M., Ljungberg I., Tsai B., Danford E. and Groah S..
Youtube How-to-Videos (HtV) - A Well-being Literacy Tool for Promoting Community Integration in Persons with Disability.
DOI: 10.5220/0004971006070613
In Proceedings of the 6th International Conference on Computer Supported Education (WeLL-2014), pages 607-613
ISBN: 978-989-758-020-8
Copyright
c
2014 SCITEPRESS (Science and Technology Publications, Lda.)
Communities (PHCs: composed of a patient, health
care providers, and caregivers) in clinics were
associated with four improvements in care:
improved sharing of knowledge and skill for health
care providers, smoother collaboration throughout
medical networks, well-supported patient self-
management, and the success of patient-focused
care. Such improvements could increase patient
empowerment and support more successful clinical
outcomes (Van der Ejik, 2013). OHCs, such as
ParkinsonNet or online SCI communities, have
significant potential to improve patient self-
management.
2 HEALTH, WELL-BEING
LITERACY, AND COMMUNITY
INTEGRATION
Health literacy as a foundation for individual and
societal well-being literacy has the potential greatly
increase the effectiveness of medical treatments. A
2006 report by Kutner et al. analyzed the health
literacy of American adults in 2003. The researchers
presented 19,000 American adults with 28 activities
to measure literacy in “clinical, prevention, and
navigation of the health care system” based on
literacy scales: a prose literacy scale, a document
literacy scale, and a quantitative scale. Participants’
literacy was rated “Below Basic,” “Basic,”
“Intermediate,” or “Proficient.” Of the responders,
53% were scored as “Intermediate” in their health
literacy while 12% were rated “Proficient.” A
significant proportion scored “Basic” (22%) or
“Below Basic” (14%) in health literacy. A large
percentage of all respondents, regardless of health
literacy score, accessed the Internet to obtain health
information. Twenty-percent of those with “Below
Basic” scores, 42% with “Basic” scores, 67% with
“Intermediate” scores, and 85% of respondents with
“Proficient” score reported using the Internet to
access information about health (Kutner, 2006).
Given this information, the use of the Internet, and
social media in particular, to increase the health
literacy of American adults is a very viable option
and one that is furthered by the presented in this
publication concerning the work of the Well-being
Literacy via Multimedia Education and Psychosocial
Research Program.
The Well-being Literacy via Multimedia
Education and Psychosocial Research Program
(WeLL) is “centered on promoting everyday life
skills using evidence-based approaches in health and
psychosocial sciences” (Libin, 2013). The purpose
of the WeLL program is to apply psychosocial
research to improve health literacy through new
technology, media, social networks, and artificial
intelligence.
The term HtV (How-To-Videos) was
proposed in the course of developing multimedia
health education for persons with the Spinal Cord
Injury (SCI) as a social network platform for
building the self-management skills for persons with
Spinal Cord Injury (SCI) (Schladen, Libin,
Ljungberg, Tsai, & Groah, 2011) HtV serve as the
basis for a social network platform for building the
self-management skills in Persons with Diabilities
(PWD) relevant to coping with daily challenges.
2.1 YouTube and SCI
With the inception of free video sharing on-line via
the YouTube network in 2005, opportunities for
self-education increased enormously. YouTube is a
popular on-line video community where viewers
discover, watch, and share videos that they have
created. The online network provides an
international forum for people to connect and share
knowledge and information. In September 2013,
YouTube reported over 1 billion unique visitors per
month (Statistics. YouTube, 2013). According to a
2013 Pew Research Study, 31% of American adults
uploaded videos online as compared to 14% in 2009.
Similarly, 78% of American adults watch or
download videos today as compared to 69% of
internet users in 2009 ((Purcell et al., 2013). Such a
popular and growing forum provides an opportunity
to present videos to empower persons with SCI and
other disabilities.
The Rehabilitation Research and Training Center
(RRTC) on Spinal Cord Injury developed “How-to”
videos (HtVs), short videos demonstrating SCI life
skills, and made them freely available on YouTube
(http://www.youtube.com) as part of a consumer-
focused training program. HtVs are offered on
YouTube as an empowering tool for self-
management of physical tasks to increase
independence after SCI or other disabling
conditions. The following study investigates the
utilization of How-to-Videos by patients, therapists,
and communities.
2.2 Purpose of On-line Education
Media for People with SCI
The innovation of an online video social network
like YouTube supports disability self-management
in SCI in two fundamental ways. Video social
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media engage persons with SCI in the development
of highly context-specific enacted knowledge that
aggregates over time to form an accessible record, a
“library” of disability-specific self-management
skills. Freely available social media can also
function as an ad hoc consumer-oriented program
that works with and for persons with SCI as they
self-advocate with health care professionals,
researchers, or community advocates. Disability
self-management can be broadly defined as the
ability to successfully cope with consequences of
chronic health conditions (Bodenheimer et al., 2010;
Libin, 2008). As persons gain experiences in living
with disability their mastery of self-management
grows.
Studies have shown that people who have
long experience of living with disability demonstrate
higher levels of self-management skills in their daily
lives. For instance, mobility and higher physical
activity are associated with effective self-
management in persons with chronic SCI but not in
newly injured individuals (Libin et al., 2010).
In our approach, the use of interactive
technology is conceptualized as a self-management
tool (Libin, 2006; Libin, 2001; Libin, 2006) for
persons with life-long disabilities such as SCI. It
builds upon foundations laid by SCI peer mentoring
and the patient navigation models (
Ljungberg et al.,
2010). Peer mentors are individuals with SCI who
provide emotional support and education to persons
with newly acquired SCI. They use widely accepted
techniques such as peer-to-peer focused
communication based on sharing one’s own
everyday experiences. Patient navigators are
broadly defined as individuals who are from the
patient’s community and have accumulated
specialized knowledge regarding specific health
conditions. An analysis of SCI-specific education
videos posted to YouTube follows.
2.2.1 Research Methodology
SCI therapists and consumers with chronic SCI,
together with the RRTC team, developed a set of
HtVs for the purpose of educating the online SCI
community, including newly injured individuals,
about the skills and techniques necessary to
effectively perform a variety of everyday tasks
(Schladen et al, 2011).
A series of studies was
conducted exploring qualitative and quantitative
aspects of SCI-specific education videos generally
available on YouTube, as well as those specifically
developed by the RRTC team (HtVs). Studies
focused on 3 aspects of the SCI-focused educational
videos: (A) content analysis of SCI-specific
educational videos posted on YouTube, (B)
therapists’ evaluation of SCI HtVs, and (C) analysis
of viewers’ responses to SCI HtVs published on
YouTube.
Figure 1: Screenshot of “How-To: video “How to Cook in
a Wheelchair.”
The screenshot shown in Figure 1 illustrates the
way the HtV is presented on YouTube. It shows an
SCI-Navigator, a person with the C5-6 (level of
severity) SCI, demonstrating how she cooks from a
wheelchair.
2.2.2 Phase a. Content Analysis of YouTube
Videos Focused on SCI
A search query on YouTube using the YouTube
Analytic engine and the key words “’How-To’
videos,” “SCI,” “self-management,” and “patient
education” returned about 10,900 video entries (as
of November 13, 2013). A previous selective
analysis of the first 1,000 search results in 2010
suggested that the first 100 entries were
representative of the content of SCI-specific videos
posted on YouTube between 2006 and 2010. These
100 video titles, content confirmed by reference to
the video’s abstract, were analyzed with regard to
the cross-cutting topics and were further combined
in categories.
Data analysis focused on how SCI inquiries were
addressed by both the individuals who uploaded
videos and their viewers by defining categories that
adequately described the spectrum of SCI-related
videos. The search-generated data were analyzed to
describe the frequency of the identified topics. A list
of topics was analyzed through sorting qualitative
descriptive data (Chwalisz et al, 1996). Each
category was then further divided into several
subcategories specific to the single problem domain.
Categories of SCI-related on-line education videos
emerged as follows based on the frequency of their
appearance on the Web (see Figure 2):
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Figure 2: SCI-related multimedia health literacy videos.
A1. SCI research, inclusive of both recovery
(including the ongoing debate concerning stem
cells, cell-based therapies), and health/wellness
research on quality of life, nutrition, and
accessibility barriers.
A2.Mechanisms of SCI, including understanding
levels of SCI and associated levels of functioning
A3. SCI narraitves, including personal stories
of SCI survivors, sharing family experiences of
coping with SCI
A4. HTVs, with the most frequent topic being
exercise videos (athletic, swimming, adaptive
tennis, and skiing) (see Phase C).
SCI research health literacy videos were the most
viewed videos in the analyzed sample (45%).
Videos on how to understand the link between the
severity of injury and everyday functioning were the
second (27%) most reported. The third most
common category (21%) included videos on
personal stories, or narratives describing day-to-day
challenges for persons with SCI and sharing
experiences of living with disability. The least
frequent category included instrumental or HtVs that
provided various types of guidance on daily task
performance. As was evident from their comments
requesting additional videos showing variations in
demonstration, YouTube viewers found content
more accessible when they were able to view a peer
enacting the task they wished to accomplish.
2.2.3 Phase B: Therapists’ Evaluation of
SCI HtVs
Patient-oriented multimedia products, such as SCI
HtVs, are created in the wider context of clinical,
research, and training practice. For this purpose, 10
HtVs were developed by an occupational therapist
(OT) in collaboration with a senior peer
mentor/educator to model adaptive skills that could
be most effectively and clearly demonstrated by an
individual who actually uses a wheelchair. Videos
depicted techniques a person with SCI might use to
increase independence in driving (transferring to and
from a car), floor transfers (from wheelchair to floor
and back to wheelchair), use of public transportation
(up and down the escalator and riding the metro),
and daily activities such as putting on boots from a
wheelchair and cooking from a wheelchair.
Thirty-one physical therapists (PTs) and OTs
experienced in working with patients with SCI
viewed HtVs on car transfer/driving, floor transfers,
and riding an escalator. Therapists evaluated the
videos and ranked them on a 3-point Likert scale
(where 3 was high and 1 was low) in terms of (a)
utility of the skills they demonstrated, (b)
helpfulness in fostering self-efficacy, and (c)
usefulness in demonstrating skills that otherwise
could not be demonstrated. Thus, each participating
therapist viewed the videos and ranked them with
regard to 1 of the 3 concepts, for example, how a
particular video may promote a feeling of self-
efficacy or how a specific video could be useful in
the everyday routine of a person with SCI.
Data analysis using Kendall’s W test
demonstrated that the floor transfer video was
associated with the concept of fostering self-efficacy
(M=2.30, P=0.37) and showed a similar trend with
the perception of utility of skills (M = 2.42, P =
.057), while the escalator video was associated with
adaptation to the environment, though non-
significantly (M = 2.23, P = .33). Analysis of open-
ended questions demonstrated that clinicians
considered the videos to be an important addition to
patient self-management education.
2.2.4 Phase C. Community Response to SCI
HtVs
Initially the study evaluated viewers’ responses to 10
SCI HtVs on YouTube using the YouTube statistic
utility, Analytics. Since this initial analysis in 2010,
the Healthy Tomorrow YouTube channel developed
as part of our project and use as a platform for
posting HtV, has grown to include 47 videos.
Topics treated in these videos included “How to Do
Pressure Reliefs in a Wheelchair and “How to Cook
in a Wheelchair,” themes highly germane to the
ultimate knowledge translation objectives of the
RRTC, as well as more eclectic, general interest
topics such as “How to Take off Boots” and “How
to Transfer from Wheelchair to Bed and Bed
Mobility.” More recently, the Healthy Tomorrow
Channel has introduced HtVs for weight-lifting and
other gym activities.
The new data were analysed to show the
community response to HtVs during the 30-day
period, October 13 through November 11, 2013.
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Views ranged from nearly 1,400 to just under 100,
demonstrating that all SCI life skills may not all be
of uniform interest. The video demonstrating the
more basic life skill of transferring from wheelchair
to bed and bed mobility was by far the most
engaging of any of the HtVs. It captured nearly 400
more views than the next most popular video, one
that showed how to transfer from wheelchair to
floor.
In fact, since its publication in September 2009,
the wheelchair-to-bed transfer and bed mobility
video has demonstrated a constant rate of daily
access as reported for November 10, 2013, which
was 55 views. More investigation is needed, but the
relative popularity of a very basic life skill
(transferring from wheelchair to bed) versus an
unusual and “edgy” life skill (going down the
escalator in a wheelchair) suggests that most HtV
viewers are persons with SCI, persons with other
mobility disabilities, or family and friends. We
hypothesize that a person without a disability who
accesses HtVs out of curiosity would be more drawn
to dramatic and unusual skills demonstrations, such
as riding an escalator in a wheelchair. Comments
posted and subscription requests further suggest that
most of the viewers of HtVs were persons with SCI,
family, or friends. Most HtVs focused on SCI life
skills were “discovered” on YouTube by referral
from related videos. In October and November 2013,
seventy-four percent of the persons who engaged the
wheelchair-to-bed HtV found it through a related
YouTube referral.
This number is significant when we realize that
referral from other videos is not the only way
persons connect with one another in the YouTube
community. We associated key words
with this popular video: “wheelchair,” “SCI,” “bed
mobility,” “transfer,” “peer mentor,” “spinal cord
injury,” “NRH,” and “disability awareness.” Only a
small minority (11.6%) of viewers arrived at the
wheelchair-to-bed video by searching one of these
key words inside of YouTube. An even smaller
number (0.5%) found the HtV from the Google
search engine outside of YouTube. Rather it was
YouTube’s own “interest engine” that connected
interested people with our demonstration of
wheelchair-to-bed transfer. YouTube utilities
“observe” users’ patterns of interest and viewing and
suggest other community resources. Most viewers,
therefore connected with the wheelchair-to-bed HtV
without explicitly knowing that they wanted to.
Long-term viewing patterns were sinusoidal,
suggesting that viewers alerted one another to the
videos’ existence. Viewing accelerated and then
dropped; subsequently, the pattern repeated. HtVs
dealing with the RRTC themes of diet and skin
management skills (ie, the videos on how to cook
from a wheelchair and how to do pressure reliefs in
a wheelchair) appear to have about the same number
of referrals from related videos as does the most
popular wheelchair-to-bed transfer video. In fact,
every referral to the RRTC-themed videos, without
exception, was made from our popular wheelchair-
to-bed HtV. The power of referral in connecting
people with SCI with information that they may not
initially find engaging is a topic for continued
investigation.
Among the data returned by the YouTube web
statistics utility, Analytics, was the geographic
location of view requests. In the lifetime statistics of
the channel, viewers were located largely in the
United States (31.4%), but a significant number of
views originated in Europe, especially in Germany
(11.5%), and in South America and Asia. The appeal
of HtVs, narrated in English, to persons who likely
are not native speakers suggests the utility of video
demonstration of skills.
According to a survey conducted by the Pew
Internet & American Life Project, 91% of
Americans own a handheld device (cell phone, smart
phone), Of individuals who own mobile devices,
40% have used it to access social networking on-line
(Duggan, 2013; Brenner, 2013). As use of the
mobile Web grows, persons with disabilities are
likely to be a percentage of those users. During
October and November of 2013, YouTube
documented a median value of 16.1% of HtV views
as originating from mobile phones, while 11.0%
originated from tablets. This is a four-fold
percentage increase in mobile device viewing since
2010. One video theme, however, represented by
“How to do One Arm Cable Bicep Row/Curl with a
Cable Machine” garnered a remarkable 30% of its
views from persons believed to be using mobile
devices. This unusual rate of mobile access coupled
with the mobile theme of the HtV suggests persons
who accessed this video from their handhelds may
have been looking for real-time support in solving
problems they were encountering while exercising at
the gym. Alternatively, they may have specifically
invoked the HtV from a mobile device to use it as a
reference while practicing the skills it demonstrated
at the gym.
2.2.5 Discussion: Persons with Disability
Interests in Social Media
Each of the 3 phases of study described in this
article create a tentative profile of SCI interests as
YoutubeHow-to-Videos(HtV)-AWell-beingLiteracyToolforPromotingCommunityIntegrationinPersonswith
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they present across the social media site, YouTube.
A dichotomy of cure versus care can be used to
describe the results of the content analysis. SCI
research educational videos were the most common
videos in the analyzed sample (45%). Videos on
how to understand the link between the severity of
injury and everyday functioning were the second
(27%) most reported. The third category (21%)
included videos on personal stories, or narratives,
describing day-to-day challenges for persons with
SCI and sharing experiences of living with
disability. Finally, the least frequent category
included instrumental videos, or HtVs, that provided
various types of guidance on daily task performance.
You-Tube viewers found content more accessible
when they were able to view a peer enacting the
same task they wished to accomplish, as
demonstrated by a preponderance of comments
asking for additional videos showing variations in
demonstration.
Findings from Phase B of the research on
clinician’s perceptions of how HtVs might benefit
persons with SCI by addressing such specific areas
of self-management as “developing a sense of self-
efficacy” or “mastering the SCI-specific skills”
support a patient-centered paradigm of care; with
reduced length of stay in inpatient rehabilitation,
mobility and function videos can play an important
role to increase independence in individuals with
SCI.
Further, data from Phase B regarding
associations between specific features of HtV and
self-management for disability concepts are
validated by the analysis of the view volume in
Phase 3 of the study. The most stable Web-driven
behavioral patterns were those that can be described
as a combination of the video content, such as
mastery of SCI-specific skills necessary to
effectively function in everyday situations, and a
high frequency of viewing volume.
3 CONCLUSIONS:
PEER-TO-PEER KNOWLEDGE
MOBILIZATION AS
COMMUNITY INTEGRATION
A peer-to-peer knowledge mobilization approach
promotes self-management of health and community
integration after an individual has been impacted by
a traumatic event. A library or repository of
multimedia health literacy on-line HtVs available
free of charge through support groups, rehabilitation
programs, and on-line forums will provide a variety
of models for individuals with an SCI for learning
new ways to carry out activities of daily living. The
HtV paradigm in multimedia-based education for
health care needs to advance a new methodology
based on a more individualized, disability-specific
approach while employing videos as learning tools.
ACKNOWLEDGEMENTS
This project is funded in part by National Institute
on Disability and Rehabilitation Research (NIDRR)
grant H133B031114, Rehabilitation Research and
Training Center on SCI: Promoting Health and
Preventing Complications through Exercise, and by
NIDRR grant H133N060028, The National Capital
Spinal Cord Injury Model System.
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