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Clinical Update
Health Social Networks as Online Life Support Groups for Patients
With Cardiovascular Diseases
Edhelmira Lima Medina
1
, Orlando Loques Filho
1
, Cláudio Tinoco Mesquita
2
Instituto de Computação - Universidade Federal Fluminense
1
; Hospital Universitário Antônio Pedro - Universidade Federal Fluminense
2
,
Niterói, RJ - Brasil
Keywords
Cardiovascular Diseases; Social Network; Discussion
Forums; Information Services; Information Exchange.
Mailing Address: Edhelmira Lima Medina •
Av. Visconde do Rio Branco, 51, Centro. Postal Code 24020-000,Niterói, RJ - Brasil
E-mail: edhyly@ic.uff.br, edhelime@gmail.com
Manuscript received December 10, 2012; revised manuscript December 19,
2012; accepted March 14, 2013.
DOI: 10.5935/abc.20130161
Abstract
The number of patients who use the internet in search
for information that might improve their health conditions
has increased. Among them, those looking for virtual
environments to share experiences, doubts, opinions, and
emotions, and to foster relationships aimed at giving and
getting support stand out. Therefore, there is an increasing
need to assess how those environments can affect the
patients’ health.
This study was aimed at identifying scientific studies on
the proliferation and impact of virtual communities, known
as health social networks or online support groups, directed
to cardiovascular diseases, which might be useful to patients
with certain conditions, providing them with information
and emotional support. A systematic review of the literature
was conducted with articles published from 2007 to 2012,
related to cardiovascular diseases and collected from the
following databases: PubMed; Association for Computing
Machinery (ACM); and Institute of Electrical and Electronics
Engineers (IEEE). Four articles meeting the inclusion criteria
were selected.
The results were interesting and relevant from the health
viewpoint, identifying therapeutic benefits, such as provision
of emotional support, greater compliance to treatment, and
information sharing on diseases and on life experiences.
Introduction
Every year, two million new individuals are diagnosed
with cardiovascular disease worldwide
1
. Patients living
with that chronic condition, in addition to careful
monitoring of their health status, need emotional support
to cope with problems hard to treat. In this context,
health social networks
2
are virtual environments where
online support groups constitute an alternative aimed
at creating relationships between patients with similar
interests (Figure 1).
According to the International Telecommunication Union
(ITU)
*
, currently more than one billion people use social
networks worldwide. Brazil ranks fourth among countries with
the greatest participation in those networks, according to the
study by comScore
**
. In the context of social networks, there
are groups of patients, who look for specific environments
to share experiences, doubts, opinions, and even emotions.
Consequently, there is an urgent need to investigate how such
environments influence health aspects. Aiming at filling that
gap, we selected several studies
3-5
that highlight the following
factors that can be used to identify the benefits originating
from the participation in those groups: opportunity to improve
quality of life; analysis of behavior and emotions; analysis of
contents; and therapeutic support.
There is a great proliferation of health-oriented
online support groups, and Brazil is one of the major
users of social networks; however, studies on such
groups are scarce. Technology dissemination and the
increasing number of patients with chronic diseases
have motivated the appearance of such groups in Brazil.
Orkut, one of the major relationship sites in Brazil, has
several communities of patients with a large number of
users, such as “Hypertension/High Blood Pressure”, with
almost 3,000 participants, and “Diabetes”, with over
20,000 participants. This shows the potential and demand
for that type of online environment.
Thus, this article was mainly aimed at reporting the
results of a literature review on the use of online support
groups in therapeutic scenarios and at identifying their
influences and impacts (positive or negative) on patients
with cardiovascular disease.
Methods
Because this study focus on cardiac disease, a systematic review
of the literature was conducted with articles published from 2007
to 2012 and collected from the following databases: PubMed;
(ACM)
***
and (IEEE)
****
. The search for scientific articles was
restricted to those assessing the use of ‘health social networks’ by
people with cardiovascular problems, but no result was obtained
with the expression ‘health social networks’. Thus, the keyword
‘online support groups’ was used.
*
ITU - International Telecommunication Union (report “Trends in
Telecommunication Reform”).
**
comScore - http://www.comscore.com/ - specialized in measuring the digital
world and digital marketing intelligence - accessed in October 2012.
***
ACM (Association for Computing Machinery).
****
IEEE (Institute of Electrical and Electronic Engineer) are relevant references
in the areas related to Computing Science
e39
Clinical Update
Medina et al.
Health social networks
Arq Bras Cardiol. 2013;101(2):e39-e45
Figure 1 – General model of a social health network.4
server
database
Social Network
Devices
Internet
Connection
Patient
Interactions
Timeline
Moderator
– Blogs
– Wikis
– Comments
– Messages
The following terms were searched: social network;
support groups; virtual communities; and online patient
social network. They were searched isolated or associated
with the following health descriptors that are part of the
Medical Subject Headings (MeSH) vocabulary: heart;
cardiac failure; cardiovascular disease; hypertension
patients; and health. In the PubMed database, the search
was performed solely with the terms ‘online support groups’
and ‘health virtual communities’, with no association with
other descriptors, because PubMed is a database on life
sciences and biomedical topics.
In IEEEXplore, the terms ‘social network’ and ‘health
online’ were used for the search. In the ACM database,
all descriptors were searched and associated so that the
major term, ‘online support groups’, was combined with the
following health descriptors: diseases; medicine; patients;
heart; and health. The exclusion criteria comprised articles
with incomplete information and articles not related to
cardiovascular diseases.
Results
Four articles, which met the inclusion criteria, were
selected and are summarized in Table 1. Those articles
provide information on online support groups, which is
one of the variation labels of the health social network for
patients with cardiovascular diseases. It is worth noting that
no article written in Portuguese was identified for analysis.
We describe each of those four articles.
HeartNet website
A pioneer study on the impact of online communities
for people with heart conditions was conducted in 2007 by
Bonniface et al
6
. The National Heart Foundation (WA division)
and the Edith Cowan University developed the HeartNet
website, a virtual community, in the format of a discussion
forum, aimed at assessing whether those virtual environments
influence or encourage the practice of empathy between
their members.
The samples (approximately 600 members) consisted of
individuals with the same disease, same education level,
same social class, and similar ages. Based on those data,
and using qualitative and social techniques (observation
and analysis of interviews), the study identified six major
characteristics detected from the communication between
participants, specifically:
Mutual support: characterizes the interaction of receiving
and exchanging information between patients and identifies
a sense of empathy of the emotional type. This is based on
the fact that some patients had provided information about
their own experiences, which served as an answer to doubts
or questions of new members. The latter were committed
to motivate the former regarding their health care. The aim
is to receive support during one’s time of need from those
whom one had supported before. According to the authors,
the expressions “well done, hang in there or good luck” were
frequent motivation comments. Find below a fragment of a
comment from one patient reported in the HeartNet article
6
.
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Health social networks
Arq Bras Cardiol. 2013;101(2):e39-e45
Table 1 – Articles selected (PubMed, ACM and IEEE) on online support groups for patients with cardiovascular problems
Article/Publishing vehicle Objective Results
Bonniface L, Green L., Finding a new kind of knowledge on
the HeartNET website. Journal compilation. Health Info Libr
J. 2007;24 Suppl. 1:67-76.
To assess the impact of an online
community of patients with cardiovascular
diseases regarding the development of
empathy and reciprocity.
The participants’ postings showed that the search for information led
them to a place where they felt comfortable asking difcult questions
and acquiring knowledge and experience from other members.
Lindsay S, Smith S, Bellaby P, Baker R. The health impact
of an online heart disease support group: a comparison
of moderated versus unmoderated. Health Educ Res.
2009;24(4):646-54.
To assess the inuence of a controlled
environment on changes in behavior and
health management of patients.
Experiments conducted for nine months, divided into two phases,
demonstrated that environments controlled by a moderator have
greater inuence on online support group participants (adoption of
good health practices) as compared to uncontrolled ones.
Hess RF, Weinland JA, Beebe K. ‘I am not alone’: Survey
of Women with Peripartum Cardiomyopathy and Their
Participation in an Online Support Group. Comput Inform
Nurs. 2010;28(4)215-21.
To determine the benets of participation in
an online support group based on a survey
of active members.
According to a survey, interacting in a virtual community resulted in
several benets, mainly hope and motivation to continue treatment.
Hess RF, Weinland JA. The Life-Changing Impact of
Peripartum Cardiomyopathy: An Analysis of Online Postings.
MCN Am J Matern Child Nurs. 2012;37(4):241-6.
To describe the contents of postings made on
a social network from the following viewpoints:
physiological, psychological, sociocultural,
spiritual and personal development.
The following postings were identied: discussion of symptoms;
exchange of advice; interactions with health providers;
uncertainty about subsequent pregnancies; expressions of
spirituality; and possibility of recovery from heart disease.
“…I know what you are going through and I promise
you, every day is an improvement. Very gentle hugs to you:)
Remember to push through the pain to breathe deeper.
It’s worth it.”
Support seeking as self-help: was identified in some
messages of participants, which evidenced that, although
no direct answers were given to one’s posts, the comments
usually ended with an acknowledgment. According to the
authors, it might be that participants somehow felt that
their words were being heard by others. Here is a fragment
of Dixie’s post:
“… Thank you, I needed to get that out. Phew, a few more
healing tears. All good stuff I suppose. Thanks guys it did help
to write about all that.”
Support giving as stored currency or debt paying: this item
is related to the culture of reciprocity. Reciprocity occurred
when patients returned and engaged to the site right after
concluding their treatments (having cured their diseases). This
implies that patients become aware of the importance of their
participations and assume a responsible attitude, repaying
the support received inside the group. Here is a fragment of
Margo’s post:
“… I might be fit and healthy now but in 5 years’ time I
might need that site again and if we don’t support it and it’s
not there I’m back to square one.”
Moderating information: considered an important
characteristic in a website where members post medical-
related information. This is control of information by the
group’s moderator, essential in order to reduce health risks
associated with misleading information or misinformed
opinions, identified in the postings.
The dilemma of sharing: this characteristic is associated
with two types of behavior detected in the group: the first
contradictory feeling was willing to share one’s own health
problems and, at the same time, the desire for privacy (internal
dialogue). Here is a fragment of Cherie’s post:
“… I of [have] got to the point of thinking well maybe I
don’t really want to talk about [my heart disease] ... ’cause it’s
you know ... I don’t want to overly dwell on it and ... but I’m
probably more motivated to help others who haven’t gone
through the process…”
The second behavior relates to the patient’s actions
inside the group, as a supporter (ie, one’s problem is smaller
than those of the others), or as a receiver (ie, aimed at
drawing as much attention as possible as a victim of disease).
The latter was considered a negative online competition,
because that behavior could discourage the participation
of other members.
However, the analysis of all interactions could not conclude
they were all beneficial for the participants. Situations implying
the contrary were identified, being named by the authors as
‘support as bad debt’.
Support as bad debt: related directly to the dissatisfaction
caused by the lack of reciprocity in posts. This type of
dissatisfaction made some patients feel frustrated or
discouraged to continue participating in the group.
The analysis of those characteristics showed that the
online support group influenced certain changes in the
behavior of the patients. The fact that some of them
took their time to answer questions, post messages and
open discussions was considered an act of philanthropy.
According to the book “The Gift Economy” by David Cheal,
that act is known as “gift economy”, a concept from social
sciences referring to the ‘culture of gift’, and, in online
support groups, the time dedicated is considered a gift
given to people.
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Clinical Update
Medina et al.
Health social networks
Arq Bras Cardiol. 2013;101(2):e39-e45
Finally, the analysis of interventions of the online
support group members suggests a change in the quality
of life of the patients/members regarding their emotions,
because the interventions helped to reduce the patients/
members’ isolation, allowed their access to a condensed
set of information, and provided mechanisms to allow
them to profit from experiences about certain diseases,
later resulting in social benefit. It is worth noting that those
characteristics were subjectively assessed in a previous
study
7
by the same author in 2006, half of them being
recognized as therapeutic and beneficial to the patients’
quality of life.
Moderated and unmoderated support group
In 2009, Lindsay et al
8
carried out a comparative
study between a moderated online support group and an
unmoderated online support group, both focusing patients
with cardiovascular problems. The aim of that study was
to assess the influence of a controlled environment on the
health behavior of patients. The moderators (professionals
in charge) encouraged the participation of patients, posting
questions and topics of interest, aiming at facilitating the
collaboration process, and, thus, fostering learning in an
active and effective form. In addition, the moderators should
monitor the discussions, aiming at creating a comfortable
and friendly environment among participants.
That study sample comprised 108 patients from a
deprived area of Greater Manchester in the United
Kingdom. Each participant received a computer and a
one-year free access to the Internet. The study lasted nine
months, and the assessment was divided into two phases.
The first phase (controlled) lasted six months and was
followed up by a moderator involved in a strategic function,
with the establishment of limits and objectives of discussion
for the group. In that phase, the participants communicated
in two ways: either direct access to the forum or sending
individual messages, the communication between pairs
being identified. The second phase (non-controlled) lasted
the remaining three months, and the interventions of the
members were frequently anonymous.
To identify the real situation of the participants of the
online support group, a questionnaire was used in both
phases. The questionnaire included the following topics:
history of residence, work and job; health conditions; and
health care insurance. To identify changes in behavior, tests
were applied on a weekly basis until study completion.
Such tests related to exercises serving as indicators in the
analysis of results. The exercises considered the frequency
of patient’s participation/interaction in the group, smoking
(number of cigarettes), diet control (measured by the
consumption of food poor in fat), and number of health
care visits.
The study showed that, during the first phase, there
was higher participation in the support group, reflected
in the tests. In the second phase, right after the moderator
withdrew his support, no significant changes were
observed, but it is worth noting that several members
decided to interact anonymously (only private messages
sent to partners). Thus, the monitored or unmonitored
environment did not affect the participants’ behavior
definitively.
It is worth noting that during the first phase (controlled
phase), the indicators ‘diet’ and ‘medical visits’ decreased
mildly, but the trend did not persist in the second phase,
which might be interpreted as a benefit from participating in
that type of online support group with a moderator.
Finally, the authors recognized that, in those online
health communities, moderators play a key role in the
communication process and in maintaining good health
practices, thus reducing medical visits, from which the
elderly could also benefit.
Peripartum Cardiomyopathy Group I
In 2010, Hess et al
9
published a study on the
advantages and disadvantages of the participation of
women diagnosed with peripartum cardiomyopathy
(PPCM) in online support groups. After receiving ethical
approval from the Human Research Committee of
Malone University, Canton, Ohio, USA, those authors
required access to the data (email and personal data) of
participants of the online PPCM group to its moderator.
An invitation was posted in the online group to participation
in the project, to which 23 women answered positively.
Each participant received the following three documents:
survey on the characteristics of the online support group;
patient’s consent; and a demographic questionnaire.
The survey sent was an adaptation from the dissertation
of Agnew LS, 2001 (title: “Características e benefícios de
Grupos de Suporte Online para pacientes com Câncer”).
The survey consisted of 20 open-ended questions focusing the
following topics: how women found out the specific online
group; the frequency of communication and participation in
the group; how they interacted with other members; what
was learned in the group; conversation topics; how the online
group changed their lives; and if the group was considered
part of their families. From their answers, the following
could be identified: emotional reactions (sadness, fear,
repulsiveness, and anger); sentimental reactions (pessimism,
hope, and courage); psychological behaviors originating from
the situation they were experiencing; and psychological
disorders, such as depression and anxiety.
The participants have also highlighted some benefits,
such as getting and sharing information on their disease,
exchanging stories, being understood by other women, and
gaining hope. The latter benefit was the most appealing,
because participants stated that it was good to know
there were people cheering for their health improvement.
However, there was less consensus about the impact of group
interaction on their quality of life.
The demographic questionnaire also revealed interesting
information on social condition, marital status, educational
level, and age group (19-34 years). The result of that
questionnaire showed that participants easily sought/found
information in the internet, which led them to participate
in the group.
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Medina et al.
Health social networks
Arq Bras Cardiol. 2013;101(2):e39-e45
Finally, the analysis of the posts revealed the concern of
the women about their diseases, death risk, and pregnancy.
Successful stories of women who overcame their diseases and
could have children were classified as hopeful and a positive
experience for the group participants.
Peripartum Cardiomyopathy Group II
In 2012, Hess et al
10
conducted another study with
156 patients with PPCM, who generated 247 posts in the
PPCM group created in MySpace. The objective was to
identify in the content posted the following Neuman Systems
Model variables: physiological, psychological, sociocultural
and spiritual aspects; and personal development.
In the postings and for each aspect, the following were
identified: discussion of symptoms; exchange of advice;
interactions with health providers; uncertainty about
subsequent pregnancies; expressions of spirituality; and
possibility of recovery from PPMC.
In addition, that last study assessed the relationship
between patients and health professionals and the
dissatisfactions caused by mistaken diagnoses or uncertainties,
which caused stress to patients. In addition, nurse practice
implications and the help they could provide to patients and
their families as professional facilitators in an online group
were analyzed.
Discussion
Nowadays, patients and their families use the internet
as a technological ally to understand the health-disease
process, to get information about symptoms, medications,
and therapeutic approaches, and to discuss common
preoccupations with other patients. In Brazil, health themes
are already present in virtual communities and have an
increasing potential. However, most virtual environments
neither are specialized in health themes nor propitiate an
ideal environment for patients to establish relationships with
people affected by the same health issue.
Several implications and potential benefits originating
from the participation and interaction of patients in
online support groups could be identified from the
articles analyzed as follows: benefits from therapeutic
treatments
11-13
; opportunity of a social life to patients who
live in isolation; benefits resulting from the experiences of
others; and, maybe the most important, the possibility to
get emotional support. It is worth noting, in the groups,
the presence of moderators (specialists), who help to take
advantage of/control/assess the quality of the information
that circulates. That type of participant can be a key
resource in the process of interpretation and adaptation
of the information created in those virtual environments.
However, analyzing and managing large amounts
of data, distinguishing between reliable and unreliable
sources, are complex tasks. In addition, they do not
systematically identify behaviors
13
or psychological
disorders of participants, and can cause omission or loss of
relevant information. In this context, intelligent programs
are appropriate resources to extract knowledge by using
techniques, such as data mining and analysis of feelings;
the latter would be useful to identify hidden behaviors,
such as anguish, sadness and anxiety, related to the
patients’ diseases.
Finally, the results about the impact of those virtual
environments on health are promising because such virtual
environments can act as additional therapies and contribute
to reduce psychological disorders, such as anxiety,
depression and stress. Nevertheless, the risks for emotionally
sensitive patients that can result from communicating and
exposing information in such environments should be more
extensively analyzed and understood.
Conclusions
Online support groups are a large repository of quality
information related to general and specific diseases,
such as cardiovascular diseases, and an appropriate
environment to foster or create a support community
between participants.
Based on the experiences of the cases studied and
with the help of computing tools, a project focused on
patients with heart failure was developed and is shown
in Appendix I.
Acknowledgements
The authors thank CAPES and FAPERJ for partially financing
this study.
Appendix I
Motivated by the promising advantages of online
support groups, our research team along with Cardiology
professionals of the Hospital Universitário Antonio Pedro
(HUAP), from the city of Niterói, developed a social health
network called “Minha Saúde”
*
(my health, in Portuguese),
aimed at people with heart failure. That social health network
was created to provide patients and physicians with a virtual
space to share information, treatments, and experiences,
and, mainly, where they could give and receive support to
cope with their health preoccupations.
That social health network, in addition to the typical
modules to store and manage clinical profiles, chat, post,
create groups and make acquaintance, counts on a ‘care plan’
module, through which patients connected to the internet
(desktop, laptop, tablet, cell phone) can control their health
by inputting physiological data (blood pressure, temperature,
weight, heart rate), daily activities (running, cycling, walking),
emotional states and current situations or symptoms (fainting,
swollen feet, headache, tinnitus).
It is worth noting the possibility of collecting physiological
data directly from medical devices by use of wireless
communication. All data collected are stored in a repository
*
“Minha Saúde” social network available at http://www.minhasaude.org
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Medina et al.
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Arq Bras Cardiol. 2013;101(2):e39-e45
and can be shared with the Intelligent Computing
System of Home Health Support [in Portuguese, sistema
Computacional Inteligente de Assistência Domiciliar à
Saúde (SCIADS)]
14
. That enables the remote monitoring of
the patients’ health conditions, supporting the physician’s
decision making when necessary.
Finally, it is worth noting that the “Minha Saúde” project
was approved by the Committee on Ethics and Research of
the Universidade Federal Fluminense (protocol Nº 126.219).
Its major objective is to assess the impact of social health
networks on the behavior and quality of life of patients with
heart failure at the HUAP.
Author contributions
Conception and design of the research and Writing of
the manuscript: Medina EL, Loques Filho OG, Mesquita
CT; Acquisition of data and Analysis and interpretation of
the data: Medina EL, Mesquita CT; Obtaining funding and
Critical revision of the manuscript for intellectual content:
Loques Filho OG.
Potential Conflict of Interest
No potential conflict of interest relevant to this article was
reported.
Sources of Funding
This study was partially funded by Fundação Carlos Chagas
Filho de Amparo à Pesquisa do estado do Rio de Janeiro.
Study Association
This article is part of the thesis of master submitted
by Edhelmira Lima Medina from Universidade Federal
Fluminense.
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