The Public As Collaborator:

Crowdsourcing Models for Digital Research Initiatives

Introduction

As online social networking sites reach their golden age, people turn to them to both actively
seek and passively find information to enhance their individualized experiences. People who
have experiences that are uncommon in their real world communities can gain benefits by
turning to online communities to build weak ties and share information. Some parents of
children with special health care needs may be required to stay at home more to care for their
children, and online social networking sites and personal blogs may connect them to others
who share their experiences. Besides such physical isolation, it may not be as easy for parents
of children with disabilities to find parents with similar experiences in their real world
community, as only about six percent of the U.S. population have disabilities.

In order to study how parents of children with disabilities find information through informal
online social networks, the author conducted a review of the relevant literature such a study
must form a foundation on. The author located key findings in three areas of research: literature
on the information behavior and needs of parents of children with disabilities; literature on the
new frontier of online social network analysis and social media; and literature on health-­‐
related online support

groups, whether those groups were formed by formal organizations or blossomed organically.
At the center of these overlapping areas lies the heart of this study’s primary concern.
Information Behavior and Needs of Parents

Parents want to learn from other parents. Adults without children may appear as less
trustworthy information sources due to their lack of personal experience and ability to verify
the accuracy of advice. Several studies confirm that parents of children with disabilities want
to hear from other parents of children with disabilities, making such like-­‐experienced
individuals more trustworthy sources of information and potentially rich sources for empathy.
Mackintosh’s 2005 study on the information sources of parents of children with autism found
that parents believed that the best sources were other parents, and that individuals with lower
incomes and socio-­‐economic status had fewer information resources. Mackintosh’s study
identified websites as a source of information but did not identify social media sites explicitly.
Statically published websites provide a controlled flow of information, whereas social media
sites provide a space for

dynamic interaction and exchange of information in a many-­‐to-­‐many forum. Mackintosh’s

study also found misinformation was a concern of such parent-­‐to-­‐ parent exchange of
information, with no mediation from authoritative health information professionals.

Pain (1999) found that personal communication is the preferred method for information-­‐
gathering parents of children with disabilities, with one parent stating, “There was no substitute
for real people, written information is nice to have as a comfort factor, but you really get your
information from people, talking face to face with them” (p. 303). Pain concluded the purposes
for information, regardless of source, were the following: “to enhance management of the
child,” where certain information improves working with the child on a day-­‐to-­‐day basis
(1999, p. 305); “to help parents cope emotionally,” where empathy from other parents adds
comfort to a diagnosis from an authoritative source; and “to access benefits and services,”
where information shared leads to new opportunities (1999, p. 308).

How do these preferences transform in a world where more and more personal communication
becomes computer-­‐mediated? Huber et al. (2005) and Tillisch (2007) both found the Internet
cited as the most common information source for parents of children with disabilities. Tillisch’s
survey of 1,000 parents found support groups rivaled the Internet for most-­‐used sources of
information, with Huber adding that information seeking is greatest at the time of diagnosis.
Personal communication through online social networking may be the next fruitful place to
study information behavior of parents of children with special health care needs.

Analyzing Computer--Mediated Online Social Networks

As more parents seek information online to help them manage day-­‐to-­‐day needs of their
child with disabilities, cope emotionally, and find services, the scale of computer-­‐mediated
communication and information is growing rapidly. No longer does the computer-­‐mediated
role of information provider rest squarely on the bandwidth of static, one-­‐way communicating
websites. With the birth of a new genre, Web 2.0 and social media, online social networking
sites such as Twitter (launched 2006) and Facebook (launched 2004 and opening to the public
in 2006) have spurred computer-­‐mediated communication and information sharing into a

new era. Facebook has more than 845 million user accounts (Protalinski, 2012), and Twitter
has more than 300 million user accounts (Taylor, 2011). The people behind those accounts may
not all be active users, but the data amassing on social media servers is enough for the Library
of Congress to enter into an agreement with Twitter executives to create an archive of all public
tweets (Raymond, 2010). Such is the value of that publicly contributed data—a status update
being a unit of data—to the future of research. Researchers have already begun to conduct
empirical studies on the large-­‐scale datasets these online social networking sites can provide.
Dodds et al. (2011) used more than 46 billion words comprising roughly five percent of tweets
posted between September 9, 2008, and September 18, 2011, to determine the happiest days of
the seven-­‐day week were Friday through Sunday, the happiest hour, between 5 and 6 a.m.

Researchers of social networks are also turning their attention to the data available on social
media sites. Huberman et al. (2009) cautions that counting the
mere number of friends and followers does not give an accurate portrayal of influence, a much-
­‐debated term among online social networking researchers. Huberman et al. believes networks
hidden among networks can be found by studying who talks to whom, a metric not easily
discoverable through public profiles alone. Burgess (2009) argues that online social networks
can be leveraged to empower women in learning environments, emphasizing that networking
function—linking people together—to build social capital that facilitates access to information
and resources. Burgess warns against believing online networks escape established privilege
structures, cautioning those wanting to turn to a digital environment to be mindful of how
power reinvents itself online.

Scholars researching information behavior and cultural communication patterns find the data
embedded in online social networking sites to be rich and informative, as well. Lerman and
Ghosh’s study (2010) tracked how information spreads through Twitter and Digg. Digg, a user-
­‐submitted news aggregator, became the “denser” platform for these researchers due to the
ease of tracking comments and measuring popularity of submissions. Digg users vote on stories
by clicking a thumbs-­‐up icon or thumbs-­‐down icon so visitors to the website can see how
each submission ranks in popularity. Lerman and Ghosh found that network structure affects
the dynamics of how the information flows from one person to the next. Digg makes following
the popularity of posts on the Wild West of Twitter seem like herding and wrangling cats.

But those retweets can be wrangled. boyd et al. (2010) argue retweeting— where a post by one
Twitter user is seen by another Twitter user and reposted to

the latter user’s profile—can be studied as a conversational practice. The researchers found that
Twitter users retweet posts for specific purposes. The retweet shows engagement in a
conversation and shares information among the listeners. A retweet in and of itself sends the
message that the user is listening. boyd et al. found the other two purposes for retweeting a post
are to indicate agreement publicly (or publicly to one’s approved list of followers if that user
has a private account) and to validate others’ thoughts. This study of retweeting as a
conversational practice demonstrates that attribution, relationship-­‐building, and community
appreciation are important aspects of participating in online social networks.

Chen (2011) came to a similar conclusion that retweeting acts to mediate relationships on
Twitter. Chen found that the more hours users spent on Twitter, the greater the need those users
had to connect with others. Chen confirmed this need for “we-­‐ness” by participants in online
social networks, and that the more active users were, the more likely they were to also feel
connected. Chen’s study focused on uses and gratification theory (U&G) to explore Twitter
users’ need to connect with others. Psychological needs direct communication goals, according
to Chen’s explanation of U&G theory, which requires purposeful decisions on participating
with communication media. Chen states (2011, p. 757),

U&G focuses on social and psychological needs, which generate expectations that lead to
different patterns of media use to gratify these needs (Katz et al., 1974). It is important to note
that Internet communication has in some ways nullified the traditional sender-­‐

receiver model, which makes using U&G even more relevant to online media (Ko, 2000).
People online can choose what media they want to use (Singer, 1998) with a simple click of
the mouse. They can both send and receive messages simultaneously through media such as
Twitter.

Which parents of children with disabilities are turning to strangers in online social networks to
satisfy their information, emotional, and psychological needs?

The Beating Heart of It

The third area of literature that informs a study on online social support networks and
information uses by parents of children with disabilities is literature on health-­‐related online
support groups. This area does not strictly cover online social network or the information
behavior and needs of parents of children with disabilities but overlaps them both. This area of
research covers any number of computer-­‐mediated communication vehicles (email lists, chat
rooms, online discussion forums, wikis, blogs, or the online social networking sites that have
already been discussed) and different mental or physical special health needs.

Miller (2006) conducted a study on social networking sites focused on mental health issues like
RealMentalHealth.com (now HealthyPlace.com), and found anonymity and connections with
other mothers were among the sites’ benefits. Miller also stressed that the information on such
sites were not a substitute for professional help; the need to be adept at computers was another
limitation. Baum (2004) focused on Internet Parent Support Groups (IPSGs) and found several
outcomes that affect the well-­‐being of care providers of children with special health
care needs. Those benefits included finding people with similar challenges; finding information
and guidance; experiencing anonymity; helping others; venting; and finding hope, gratitude,
and experiencing a change in perspective. Baum’s study found parents who participated in
IPSGs felt empowered, and these parents strongly recommended the approach to other parents
and care givers of children with special health care needs. The participants in Baum’s study
were mostly female and, like Miller, Baum found that some needed to adapt to computers but
such a learning curve was not impossible to overcome. Trust was also a critical aspect in
successful IPSG experiences. Although ninety percent of Baum’s participants in the study
recommended joining an IPSG as soon as possible, Baum warns against problems with relying
on them exclusively.

Potential dangers include misinformation, expression of intense feelings that could overwhelm
those struggling with pain and fear, different needs related to different stages of adaptation,
untrained people who may offer therapy or untested products, and occasional pressure to adopt
excessive or distorted group beliefs. (p. 388)

With these warnings taken to heart, Baum found clear support for connecting with other parents
of children with disabilities in an online environment.

Margarlit and Rashkind (2009) performed a content analysis on reactions of mothers of

children with learning disabilities and attention deficit hyperactivity disorder as they mourned
the potential closing of a website that facilitated online community support. Their analysis also
found the interactions through the site empowered mothers through information seeking and
community support. The

analysis in this study found the mothers believed the following was facilitated through this site:
information shared was valid and reliable, information could be adapted more easily to their
needs, current information and research could be translated into a format accessible to them,
information was validated by personal experience, and information could provide different
perspectives. Their statements expressed that they benefited from the online community
through emotional support, empathy, companionship and prevention of loneliness, immediate
support and help, privacy and safety, and through the withholding of judgment. The findings
from this area of literature support the need for more research on the use of online social support
networks for parents of children with special health care needs.
Conclusion

These studies overlap around the topic of using an online social network like Twitter to
organically create a community where parents of children with disabilities may share their
information as well as their empathy. No studies were found to address this subject directly,
suggesting a gap in the literature worthy of study. By gleaning these key findings from the
three areas—literature on the information behavior and needs of parents of children with
disabilities; literature on the new frontier of online social network analysis and social media;
and literature on health-­‐related online support groups—such a study could begin to discover
how parents of children with special health care needs find serendipitous information and build
weak ties through social media.