Facebook medical support groups: the communication privacy management perspective
| Date | 09 February 2022 |
| Pages | 664-684 |
| DOI | https://doi.org/10.1108/AJIM-10-2021-0298 |
| Published date | 09 February 2022 |
| Subject Matter | Library & information science,Information behaviour & retrieval,Information & knowledge management,Information management & governance,Information management |
| Author | Carmel Avizohar,Tali Gazit,Noa Aharony |
Facebook medical support groups:
the communication privacy
management perspective
Carmel Avizohar, Tali Gazit and Noa Aharony
Information Science, Bar-Ilan University, Ramat Gan, Israel
Abstract
Purpose –Exploring the considerations that guide and influence members of Facebook medical support
groups to disclose private information.
Design/methodology/approach –The sample included 293 participants, aged 18–85 years, who answered
an online survey, 155 members of Facebook medical support groups and 138 members of other Facebook
groups.
Findings –Members of medical support groups attach greater importance to privacy policy, give greater
value to privacy and reveal more private information, compared to members of other groups. Members of
medical support groups tend to feel that they receive more support and feel that the privacy policy preserves
their privacy much more. These feelings are associated with greater self-disclosure of groups’members.
Originality/value –The research insights will help medical support groups’members and admins to put into
action the fundamental right to privacy and build a set of rules tailored to their individual and group needs.
Keywords Privacy, Support groups, Self-disclosure, Facebook
Paper type Research paper
Introduction
Online health communities are groups of common stakeholders who provide access to
information regarding specific diseases and treatments, experiences and insights (Johnston
et al., 2013). Social networks contain support groups for almost every disease and medical
condition (Leonard et al., 2015), and many who seek medical information address them for
information on practical strategies, advice and personal stories (Naveh and Bronstein, 2019).
Members of support groups frequently disclose private information, as those groups
are designed to share personal experiences and to provide social support and help (Yang
et al., 2019a,b). An inclusive definition for private information can be found at the General
persons with regard to the processing of their personal data should ... respect their
fundamental rights and freedoms, in particular their right to the protection of personal
data. This regulation is intended to contribute to the accomplishment of an area of
freedom, security and justice and of an economic union, to economic and social progress, to
the strengthening and the convergence of the economies within the internal market, and to
the well-being of natural persons”(European Parliament and European Council, 2016,
section 2). For many years, self-disclosure was perceived as an intimate and private thing;
however, Facebook has changed this perception as well as the way one chooses to disclose
information (Waters and Ackerman, 2011). Private information reaches the news feed of
hundreds or thousands of members, who share ownership of the information, and this is a
normal Facebook activity, that is considered less normative in face-to-face meetings
(Bostwick, 2018). Members of Facebook medical support groups disclose intimate details
on their daily life as a strategy for receiving information and support (Bronstein, 2014).
Since these groups contain private and highly sensitive information the chances of
invasion of privacy are high (Kordzadeh et al., 2016), including collecting and sharing
personal data without consent (Liu et al., 2017).
AJIM
75,4
664
The current issue and full text archive of this journal is available on Emerald Insight at:
https://www.emerald.com/insight/2050-3806.htm
Received 18 October 2021
Revised 14 December 2021
Accepted 26 January 2022
Aslib Journal of Information
Management
Vol. 75 No. 4, 2023
pp. 664-684
© Emerald Publishing Limited
2050-3806
DOI 10.1108/AJIM-10-2021-0298
Recognizing the importance of privacy considerations, Dinev and Hart (2006) used a
privacy calculus perspective, which is relevant whenever engagement involves some degree
of privacy risk. The privacy calculus theory posits that online self-disclosure is a product of
three influences: privacy concerns, anticipation of benefits and trusting beliefs. Based on
these elements of a privacy calculus, they found that the cumulative influence of trust and
anticipation of benefits are important factors that can outweigh privacy concerns perceptions
in the decision to disclose personal information when an individual uses the internet (Dinev
and Hart, 2006). However, the positive impact of trust on self-disclosure is stronger in
individualistic cultures than in collectivistic ones (Krasnova et al., 2012).
Many believe in their right to regulate environment’s access to their private information to
prevent unauthorized use and breach of privacy. Communication privacy management
(CPM) theory proposes heuristic rules and assumptions by which a person decides whether to
share private information, with whom and when (Petronio, 2002). The present study is based
on this theory and, through this perspective, examines the management of private
information in medical support groups on Facebook.
Various studies have been conducted on privacy (Alkire et al., 2019;Acquisti et al., 2015),
Facebook support groups (Mustafa et al., 2015;Farzan and Jonassaint, 2017) and private
information management (Erickson, 2006), but to the best of our knowledge, no research has
yet combined all these fields together. The purpose of the present study is to learn about the
considerations that guide and influence members of Facebook medical support groups to
disclose private information. The research insights may reinforce members’awareness of
privacy and the importance of managing and controlling private information and help group
administrators handle information and knowledge in a way that encourages qualitative
participation and optimally protects members’privacy. Hence, the research’s questions are:
(1) Is there a difference between members of medical support groups and members of
other groups in terms of privacy and perceived support?
(2) What are the factors that explain self-disclosure in Facebook medical support
groups?
Theoretical background
An online support group is defined as a virtual social space where people meet to receive and
provide information or support, learn, or find associates (Preece, 2001), through an interaction
characterized by requests, information sharing, opinions’expression and suggestions’
making (Paskewitz and Beck, 2018).
Different studies on support groups focus on face-to-face as well as computer-mediated
support, for example, support search strategies (Buehler et al., 2019) or types of support for
Facebook groups (Taiminen and Taiminen, 2016). The present study will focus on privacy
issues of members of online medical support groups.
Medical support groups
Online medical support groups do not provide professional, structured care, but rather serve
as an arena to share feelings and thoughts (Gazit and Amichai-Hamburger, 2020). This
exchange of information allows members to leverage groups’collective wisdom for their
benefit and acquire knowledge on treatment methods, medical experts in specific fields and
relevant information needed to make informed decisions (Johnston et al., 2013). The discourse
in the groups improves decisi on-making processes among m embers, as they have
sophisticated ways of gathering information, where they can gain a better understanding
of the nature of their distress and learn from others’experiences (Barak et al., 2008).
Facebook
medical
support groups
665
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