Rational and Cultural Self-Disclosure through Social Media in
People Living with HIV/AIDS
Argyo Demartoto, Bhisma Murti and Siti Zunariyah
Universitas Sebelas Maret, Surakarta, Indonesia
Keywords: Rational, Self-Disclosure, Social Media.
Abstract: Stigma and discriminative treatment by community leads the People Living with HIV/AIDS or PLWHA to
hide their HIV status. This research aimed to analyze rational and cultural self-disclosure through social media
in People Living with HIV/AIDS. This qualitative research employed computer-mediated discourse analysis.
This research joined Facebook group and collected data through online observation on site
www.victoryplusaids.org, explored activity and network, including utilizing search, user list, statistics and
tags facilities on March 20-25, 2017, and in-depth interview with the members related to conversation content,
cause, advantage and disadvantage of self-disclosure in social media. Social media becomes a space for
PLWHA for sharing feeling, perception, opinion through writing and photograph of their activities. Culture,
self-confidence, wish of not burdening others, and need for protection became the matter of consideration for
self-disclosure. PLWHA are no longer burdened with secret, obtain social support, and easy access to health
service. However, from personal risk, relationship and professionalism aspect, they are isolated by their friend,
declined by partner, and loss their job. Viewed from the content of site, other PWLHA and community can
educate more and increase knowledge on HIV/AIDS, and respect the rights of PLWHA.
1 INTRODUCTION
People living with HIV/AIDS (PLWHA) are faced
with difficult situation (Qiao et al., 2015). Hiding
disease condition results in a very annoying inner
sorrow due to the burden of securing secret, while
revealing their HIV status also results in such
problems as declination (Majumdar and Mazaleni,
2010; Chaudoir et al., 2011; Rouleau, 2012).
One factors leading an individual to do self-
disclosure is who the listener is to whom he/she will
give information; so that he/she tend to share with the
trustable one, close to him/her and he/she likes such
as member family, friend and healthcare workers
(Chaudoir et al., 2010; Yonah et al., 2014; Devito,
2016; Bird and Voisin, 2013). Therefore, self-
disclosure is important to be starting point for
PLWHAs to express their thought and feeling, to
improve the self-confidence, and to build relation
with others, thereby finding out information about the
disease, whether its symptom, transmission method,
risk factor or treatment (Yadav, 2010; Stutterheim et
al., 2016). As a part of society, PLWHAs are
inseparable from media exposure that is context-
sensitive because every society has distinctive culture
to interpret a variety of symbols in its life.
One of media activity forms is media literacy, a
set of perspectives that we actively expose ourselves
to the media to interpret the meaning of the messages
we encounter. We build our perspectives from
knowledge structures. To build our knowledge
structures, we need tools and raw material. These
tools are our skills. The raw material is information
from the media and the real world. Active use means
that we are aware of the messages and are consciously
interacting with them (Potter, 2004; Luft, 1970). New
media as those form that combine the three Cs:
Computing and Information Technology (IT),
Communication Network, digitized media and
information content (Flew, 2014; Potter, 2016).
The application types of new media are varying
including Twitter, Facebook, Instagram, Path, Line,
and WhatsApp. Through social media, interpersonal
communication is established, and socialization and
information exchange can be done, as feeling can be
shared, psychological expression can be revealed, and
photo and video can be shared (Martens, 2010;
Qualman, 2012). Understanding the content of media
as a text gives us an ability of connecting culture to
Demartoto, A., Murti, B. and Zunariyah, S.
Rational and Cultural Self-Disclosure through Social Media in People Living with HIV/AIDS.
In Proceedings of the 1st International Conference on Educational Sciences (ICES 2017) - Volume 1, pages 239-242
ISBN: 978-989-758-314-8
Copyright © 2018 by SCITEPRESS – Science and Technology Publications, Lda. All r ights reserved
239

life, enjoying, conceiving and appreciating it
(Silverblatt, 1995; Rosenbaum et al., 2008; Jacquinot
et al., 2008). So, being opened and participative will
be useful to living along with PLWHAs. In this
context, rationality plays an important part because
the human’s source of knowledge is mind or idea
(Wawrzyniak et al., 2013; Baran, 2014; Thompson et
al., 2015).
In some pages like www.spiritia.com, and
www.victoryplusaids.org, PLWHAs become the
main locus of media literacy activity, thereby can be
connected to everyone including the newly known
one and separated physically. The development of
relation is analogized with onion explaining how
people interact with each other by peeling their own
information layers. Its dimension breadth is
discussion topic, while its depth is which information
layer can be revealed to other (Altman and Taylor,
1973; Littlejohn and Foss, 201; Griffin, 2011).
PLWHAs’ experience with performing self-
disclosure through social media becomes the state of
art of this research.
2 METHODS
This qualitative research employed c computer-
mediated discourse analysis approach (Herring, 2001;
Schiffrin et al., 2001; Phillips and Hardy 2002). The
author joined the Facebook group and collected data
through online observation on site
www.victoryplusaids.org, exploring its activity and
network, and utilizing search, user list, statistics and
tags facilities from March 20-27, 2017, but focusing
on the status content and conversation uploaded by 8
PLWHAs revealing their experience in detail, related
to their HIV status, disease symptom, and risk factor
through https://www.facebook.com/ Victory-PLUS-
240409562760006/.
They are 2 housewives (A1 and A2), a female
sex worker (B), a high risk man (C), an IDU (injection
drug user) (D), a gay (E), a transsexual (F), and a peer
educator (G) recommended by the Chair Person of
Victory Plus Peer Group, Yogyakarta Indonesia,
corresponding to the objective of research. The author
also interviewed the informant related to cause,
advantage and disadvantage of their self-disclosure.
This research has been approved by Ethical
Committee of Social and Political Sciences Faculty of
Sebelas Maret University.
3 RESULTS AND DISCUSSION
The result of investigation on self-disclosure status
content of PLWHAs through victoryplusaids.org and
https://www.facebook.com/Victory-PLUS-2404095
62760006/ is divided into 3 categories: PLWHA’s
knowledge, attitude, and action related to their HIV
status. PLWHAs’ knowledge on HIV/AIDS is
varying. A1 said that HIV/AIDS is an infectious,
frightening, and life threatening disease. [A1,
uploaded on March 20, 2017]. A2 stated that my
physical health condition is impaired, and even
clinical symptoms of other disease arises such as
eating pattern, skin, visual impairment, fever, and
limp [A2, uploaded on March 20, 2017].
Meanwhile B argued that I am really suffering
from and in misery. I am so sad and cannot believe
that I develop HIV [B, uploaded on March 21, 2017].
C and D wrote in their account as follows, on March
22, 2017, I am afraid of transmitting this disease to
my wife and to die suddenly. In addition, I am sad for
my neighbors treat me cynically and keep far away
from me [C, uploaded on March 22, 2017]. I hate and
regret my deed. [D, uploaded on March 22, 2017].
E and F said that they are submitted and shy, they
said I am submitted because I am helpless and
hopeless [E, uploaded on March 22, 2017]. As the one
developing HIV/AIDS, of course, I feel shy but I do
not know what I should do… [F, uploaded on March
22, 2017]. Meanwhile, G wrote, this disease really
burdens me because I always think about it any time
[G, uploaded on March 23, 2017].
Regarding the PLWHAs’ attitude to their HIV
status, A1, A2, and B suggest as follows. When I
think about this disease, I am much stressed. [A1,
uploaded on March 24, 2017]. Actually I want to
escape from this physical and mental distress, and to
live happily but, I have been infected HIV/AIDS, so I
can do nothing. [A2, uploaded on March 24, 2017]. I
hope my health is not getting worse, and I will be
cured and healthy. [B, uploaded on March 24, 2017].
Because C, D, E, F and G want to escape from
their physical and psychological distress, they state as
follows. Where can I get Voluntary Counseling and
Testing (VCT)? [C, D and E uploaded on March 24,
2017]. I went to VCT in Public Health Center
(Puskesmas) of Wirobrajan Yogyakarta at 09.00
today [E, uploaded on March 24, 2017]. Where is
mobile VCT located? Can I take HIV test when
mobile VCT is conducted? Where can I access anti-
retroviral? [C, D, E, F, and G, uploaded on March 25,
2017].
Through Facebook, PLWHAs get response from
some receivers such as family, peer, peer group,
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healthcare workers, HIV/AIDS activists, including
the newly known one. The response from healthcare
workers such as physicians, VCT counselors and
nurses is suggested by A1, A2 and C in their account.
B gets support and attention from his/her
coworkers, he/she wrote in his/her status as follows:
Thank you my colleagues for your support, indeed
although I am PLWHA, I should keep doing
activities, working and being healthy [B, uploaded on
March 25, 2017].
D and F obtaining support from their parents and
brother/sister uploaded their photograph not
reluctantly while writing: I feel secure and have life
expectancy because my family always cares about me
[D and F, uploaded on March 25, 2017]. E as peer
educator and G participating actively in Prevention of
Mother to Child Transmission (PMTCT) get response
from Victory Plus Peer Group and PMTCT members.
They uploaded photographs during conducting VCT
mobile and HIV/AIDS socialization activities in
Wirobrajan Yogyakarta.
Considering the result of interview, it can be
found that the advantages of opening HIV status are,
among others: no longer burdened with secret, can
question and receive emotional support, and can
access health treatment and take medication more
easily. Some PLWHAs state that the disadvantages of
opening HIV status are: avoided by friends, refused
by partner and losing job, mixed feelings, ignoring
others due to deathly disease, and assuming that any
symptoms are related to HIV, afraid of assembling
with others due to security, and the likely risk of
experiencing physical and/or mental mistreatment.
So, it is generally related to discrimination and
negative stigma against PLWHA.
PLWHAs performing self-disclosure through
social media take the advantages and the
disadvantages into account, present and past
experiences, and their personality. Cultural and
personal factors affecting the PLWHAs to open their
HIV status are self-confidence, not willing to burden
others, needing protection from social pressure, self-
denial as one way of solving problem, fatalism, and
distrusting others or system. Asking for support
actually makes an individual seems to be sick and
weak, but he/she really needs it. External factors
affecting the decision of self-disclosure are family,
social support and VCT counselor, PMTCT Team
and physician.
One of PLWHAs’ inner distresses comes from
fear and others’ negative assessment when they
disclose their disease condition. Self-disclosure
through social media generates an expectation to be
free from physical and mental distresses, due to
receiving information about disease, emotional
support, and medication help. It affects PLWHAs’
action to deal with distress by finding out, looking for
support, telling about the condition encountered,
taking medications and consuming drug accessed in
pharmacy (yadav, 2010). Generally, the decision of
self-disclosure is not made alone, but by asking for
support first from the trustable ones who always care
about, support, and treat them well like family, friend,
Victory Plus peer support group, and healthcare
workers.
Considering the content of status and
conversation, it can be found that through self-
disclosure, PLWHAs get advice from healthcare
workers to keep taking medications, emotional
support, and access to easy medication and treatment,
and opportunity of expressing thinking and feeling
(Wawrzyniak et al., 2013; Thompson et al., 2015).
Self-disclosure makes PLWHAs getting correct
information about HIV/AIDS thereby changing their
misunderstanding on the transmission method,
protecting partners and the beloved one, conducting
PMTCT, and improving the consciousness of the
importance of medication (Chaudoir et al., 2010;
Yonah et al., 2014).
Thus, PLWHAs feel free from pressure, feel
better and having future. Emotional support can help
them receiving the condition they encounter, reduce
fear and withdrawal from society. It means that it
helps relieving psychological stress and potentially
changing the life to the positive one (Qiao et al., 2015;
Chaudoir et al., 2011; Lugalla et al., 2012). Family,
friend, peer support group, and healthcare workers
contribute to generating the PLWHAs’ spirit to do
some activities that can improve their life quality by
taking medications, joining peer support group, and
helping others. The participation of PLWHAs in Peer
Support Group can reduce their fear, depression,
loneliness and isolation, because environment
support PLWHAs to express feeling. Sharing
experience through social media makes PLWHA
feeling not alone, better, and forgetting their sickness
(Flew, 2014; Martens, 2010; Rosenbaum et al., 2008).
4 CONCLUSIONS
As social media users, PLWHAs conduct self-
disclosure by disclosing their feeling, perception and
opinion through writing, and sharing some
photographs related to HIV status in their account. It
becomes a source of social learning that we should
remain to be alerted to HIV/AIDs.
Rational and Cultural Self-Disclosure through Social Media in People Living with HIV/AIDS
241

ACKNOWLEDGEMENTS
This work was supported by grants from the Ministry
of Research, Technology and Higher Education,
Indonesia Number :873 /UN27.21/PP/2017 to Argyo
Demartoto, Bhisma Murti and Siti Zunariyah.
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