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Health Social Networks as Online Life Support Groups for Patients With Cardiovascular Diseases


Abstract and Figures

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.
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Clinical Update
Health Social Networks as Online Life Support Groups for Patients
With Cardiovascular Diseases
Edhelmira Lima Medina
, Orlando Loques Filho
, Cláudio Tinoco Mesquita
Instituto de Computação - Universidade Federal Fluminense
; Hospital Universitário Antônio Pedro - Universidade Federal Fluminense
Niterói, RJ - Brasil
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
Manuscript received December 10, 2012; revised manuscript December 19,
2012; accepted March 14, 2013.
DOI: 10.5935/abc.20130161
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.
Every year, two million new individuals are diagnosed
with cardiovascular disease worldwide
. 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
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
, 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
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.
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;
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 - - 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
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
Social Network
– 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.
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
. 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
Clinical Update
Medina et al.
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 difcult 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.
To assess the inuence 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 inuence 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 benets 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 benets, 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 identied: 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.
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
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
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
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
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.
Clinical Update
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
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.
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
; 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
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.
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.
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
Clinical Update
Medina et al.
Health social networks
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)]
. 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
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
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Clinical Update
Medina et al.
Health social networks
Arq Bras Cardiol. 2013;101(2):e39-e45
... Privacy is probably definitely a big one […] let's say for instance a hypothetical website where you had a user and you had your name and someone from school finds it and takes it to school and 'oh Alice has got Chlamydia' and it's like it goes around the school like a joke. ( Group 11,[16][17][18][19][20] Yeah there is no 100% guarantee that the information that you provide is not being stored somewhere or seen by someone who is not supposed to see it, or kept on a server and like sent to China or something. (Group 4, 16-20 years) These participants' apprehension of sharing personal information online highlights a general awareness of online scams and that sometimes there is a lack of certainty of who the author of some text is, how reliable the information is and where the data will be stored. ...
... Having it so accessible. (Group 11,[16][17][18][19][20] ...
... I think technology could help in[LOCATION] as like more of an outreach thing because we are so rural and we are so separated from a lot of the big kind of city centres that have a lot more kind of like medical awareness […] And I feel like technology can contribute to [LOCATION] by like opening that a lot more and letting some of those new ideas come in too […] like I reckon especially things with mental health which is still unfortunately quite stigmatised here. (Group 11,[16][17][18][19][20] ...
Full-text available
Objectives Examine attitudes to using online health and wellness services, and determine what barriers may exist to this in two rural communities in New Zealand. Design A thematic analysis informed by a social constructivist paradigm explored the attitudes of youth and adults to give voice to these communities. Eighteen focus groups—nine in each region—were held for an hour each, with between three and nine participants in each group. Setting Two rural areas at the Northern and Southern ends of New Zealand were chosen. In each area, we partnered with a local health centre providing primary care services. Three localities were identified within each region where we conducted the data collection. Participants Participants were youth aged 12–15 years, aged 16–20 years and adults over 21 years. Overall, 74 females and 40 males were recruited. Recruitment occurred through schools, community organisations or personal contacts of the facilitators, who were youth workers in their respective communities. Ethnicity of the participants was representative of each area, with a higher percentage of Māori participants in Northland. Results Eight themes were identified which described participants’ attitudes to technology use in healthcare. Themes covered accessibility, cost, independence, anonymity and awareness issues: technology makes health information easily accessible; access to technology can be limited in rural communities; technology can reduce the cost of healthcare but it is too expensive for some; technology increases independence and autonomy of people’s own health; independent healthcare decisions come with risks; anonymity encourages people to seek help online; technology can help raise awareness and provide peer-support for people with health issues; technology impacts on social relationships. Conclusions Participants—particularly youth—were generally positive about the role of technology in healthcare delivery, and interested in ways technology could improve autonomy and access to health and wellness services.
... Sur les 11 examens pris en compte, sept ont signalé des effets mixtes sur les résultats sanitaires et les comportements liés à la santé (voir les détails ci-dessous). Les quatre autres ont fait état d'avantages, comme la satisfaction, la détection de renseignements et le soutien social 8,[31][32][33] . ...
... Un examen réalisé par Medina et coll. 32 (score de 3 à l'outil AMSTAR) a traité des plateformes de médias sociaux en ligne à l'intention des personnes ayant une maladie cardiovasculaire et décrit l'amélioration du régime et de la qualité de vie chez celles qui utilisaient ces plateformes. L'examen de Chang et coll. ...
... Aucun effet nuisible signalé. Les limites comprenaient la fiabilité médiocre, les préoccupations en matière de qualité, l'absence de respect de la vie privée, l'ignorance des risques de la divulgation de renseignements, les conseils nuisibles ou inexacts, la surcharge de l'information, l'incertitude par rapport à la fac¸on d'appliquer l'information selon les situations personnelles, la plus grande efficacité de certains médias quant 32 ont décrit le mécontentement ou l'insatisfaction des participants causés par un mauvais diagnostic ou un manque d'information ou de soutien, ce qui constitue une limite des médias sociaux. Nef et coll. ...
Introduction L’utilisation des médias sociaux en matière de santé publique et de promotion de la santé est en croissance, car ces outils permettent d’éliminer les barrières géographiques et physiques à l’accès aux services et aux soins de santé. Cependant, ils sont une source potentielle d’inégalité en matière de santé car une partie de la population n’y a pas accès ou ne les utilise pas. Cet article a comme objectif d’évaluer les effets des interventions interactives dans les médias sociaux sur les résultats sanitaires, les changements de comportement et l’équité en matière de santé. Méthodologie Nous avons réalisé une synthèse rapide d’examens systématiques axés sur des interventions favorables aux interactions réciproques, que ce soit les forums de discussion, les réseaux sociaux (comme Facebook et Twitter), les blogues, les applications liées aux communautés électroniques ou le partage de contenu multimédia. Nous avons eu recours à une stratégie de recherche fine pour sélectionner les examens systématiques. Résultats Onze examens systématiques ont répondu à nos critères d’inclusion. La plupart des interventions visées par ces examens visaient des groupes de discussion en ligne ou des outils similaires. Ces interventions étaient isolées ou conjointes à d’autres. Sept examens ont fait état d’effets mixtes sur les résultats sanitaires et les comportements sains. On n’a constaté aucune analyse détaillée des caractéristiques liées aux inconvénients, notamment un statut socioéconomique plus faible ou l’âge. Par contre, certaines études ciblées ont montré que les interventions dans les médias sociaux étaient efficaces pour certaines populations précises sur le plan de l’âge, du statut socioéconomique, de l’ethnicité et du lieu de résidence. Quatre examens ont fait état d’avantages qualitatifs, comme la satisfaction, le recueil d’information et l’amélioration du soutien social. Conclusion Les interventions dans les médias sociaux se sont avérées efficaces pour certaines populations susceptibles d’être désavantagées (jeunes, aînés, personnes à faible statut socioéconomique et population rurale), ce qui prouve leur efficacité potentielle pour l’avancement de l’équité en matière de santé. La confirmation de cette efficacité nécessiterait toutefois une étude approfondie. Plusieurs examens ont soulevé la question de l’acceptabilité des interventions dans les médias sociaux. Seulement quatre études se sont penchées sur le niveau d’utilisation de l’intervention et elles ont toutes dévoilé un faible niveau d’utilisation. Il faudra réaliser d’autres travaux de recherche sur les plateformes des principaux médias sociaux actuels, particulièrement auprès des populations risquant d’être désavantagées, afin d’évaluer leurs effets sur les résultats sanitaires et l’équité en matière de santé.
... Segundo a literatura [6,8,11], existe uma considerável atenção nas redes sociais de sáude. Relata-se que a participação de pacientes nestes ambientes traz benefícios psicológicos e emocionais [9,11,19,20], tais como redução do isolamento, motivando o autocuidado, instilando esperança e aumentando qualidade de vida. ...
... Segundo a literatura [6,8,11], existe uma considerável atenção nas redes sociais de sáude. Relata-se que a participação de pacientes nestes ambientes traz benefícios psicológicos e emocionais [9,11,19,20], tais como redução do isolamento, motivando o autocuidado, instilando esperança e aumentando qualidade de vida. Embora a qualidade de vida esteja sujeita a outros fatores do cotidiano, o fato dos pacientes não se sentirem sozinhos com suas doenças aumenta suas expectativas de melhora. ...
... Com o intuito de confirmar as premissas citadas nos diferentes estudos de caso deste artigo, realizamos uma análise das informações compartilhadas dentro da OHSN Minha Saúde, protótipo desenvolvido pelo nosso grupo de pesquisa e que forma parte do projeto SCIADS [1]. Este ambiente colaborativo on-line, conforme mostrado na Figura 2, está focado em pacientes com problemas cardiovasculares [11,12]. Já o segundo questionário era relacionado à satisfação com a vida. ...
Conference Paper
Nos dias de hoje, as redes sociais de saúde favorecem a comunicação entre pessoas que sofrem de alguma doença crônica ou tem um familiar, amigo ou conhecido que estão passando pela mesma situação de saúde. Estes ambientes virtuais, podem ser considerados aliados importantes para esclarecer dúvidas, compartilhar experiências, procurar novos tratamentos e criar relacionamentos para dar ou receber apoio emocional. Nesse sentido, há uma crescente necessidade de estudar como estes ambientes podem repercutir na saúde dos pacientes. Este artigo tem por objetivo identificar na literatura científica estudos sobre a proliferação e impacto dos grupos de suporte online nas Redes Sociais de Saúde, que podem ser úteis aos pacientes com doenças crônicas, permitindo-lhes obter informação e apoio emocional. Além disso, relatamos o estudo de caso sobre o Minha Saúde, que é uma rede social para pacientes com insuficiência cardíaca. A análise da informação compartilhada nesta rede revela comportamentos interessantes dos participantes que servirão para futuros trabalhos como a análise de sentimentos.
... [12] Some studies have also shown that patients with heart failure use social network such as Facebook, Instagram, WhatsApp, and Telegram and share their experiences with other users. [13] In their study, Antonicelli et al. found that most of elderly congestive heart failure patients use social networks to receive health information regarding their disease, nutrition, physical activity, and medication. Furthermore, the use of social networks resulted in reducing readmissions and increasing the regular use of drugs by the elderly. ...
... In line with this finding, the results of the study of Medina et al. also showed that most patients with cardiovascular conditions used social networks such as Facebook, Instagram, WhatsApp, and Telegram and were willing to interact with physicians, counselors, and other patients through these networks to share their information and experiences. [13] Therefore, it is recommended that healthcare professionals be familiar with sites and channels providing valid information on COVID-19 prevention, or create social network channels or design online health information websites about gaining the knowledge of the signs and symptoms of COVID-19 and modes of transmission, awareness of impacts and outcomes of COVID-19 exacerbating the disease, performing daily physical activities, following a prescribed medication regimen, use of effective drugs after observing COVID-19 symptoms, etc., for their patients. Our results also showed that the type of activity and participation and in the social network had a significant effect on the self-care behavior of heart failure patients so that the highest mean self-care behavior was related to heart failure patients seeking out scientific, nutritional, and medical information regarding COVID-19 on social network and patients seeking out issues and news of COVID-19 ranked second in terms of mean self-care behavior. ...
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Background: Patients with heart failure are one of the high-risk groups for coronary artery. Distance education of self-care behaviors can be effective in preventing the disease. The aim of this study was to investigate the effect of social networks in explaining the awareness of cardiovascular patients' self-care behaviors toward COVID-19. Materials and methods: In the present survey study, 227 patients with a history of heart failure were selected from Shahid Rajaei Hospital in Tehran by the available sampling method (May to July 2020). Data collection tools were the standard European Self-Care Behavior Questionnaire for heart failure and the Dorty Elizabeth Orem self-care model. Data were analyzed using SPSS Version 22. Results: The results of the Pearson correlation coefficient showed a positive and relatively strong linear relationship between the variable of the degree of persistence in the use of networks with the eight dimensions of self-care behavior except psychological emotion control (r = -0.39, P = 0.315). Furthermore, a significant weak inverse relationship between the dimension of "cooperation with physicians and treatment staff" (r = -0.22, P = 0.129). Moreover, psychological support (r = -0/034, P = 0.446) was observed with the use of networks. Multivariate regression analysis revealed that the type of activity and participation in networks has a greater share and effect in increasing the score of self-care behavior of 0.55. Conclusions: Since the use of networks has a positive effect on patients' self-care behavior, the use of these networks is recommended as a community-based approach in the health system and to improve health and health outcomes.
... Online interventions may be useful to encourage the participants to adhere to the diet, and work as a reminder of the importance of the intervention. The use of online support groups were found to be effective in lifestyle modifications (43,44). In fact, in our study, students in the intervention group were very active in participating in the WhatsApp support group used in this intervention. ...
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Background/Aim: To evaluate the effectiveness of a nutrition education intervention to limit added sugar intake among undergraduate female students. Material and Methods: This is a quasi-experimental pretest-posttest control group study that was conducted among 46 healthy participants who were selected in random (23 each in intervention and control groups). All participants were undergraduate students at Taibah University, Madinah, Saudi Arabia. The intervention included two face-to-face educational sessions and weekly messages during the 8-week study period provided information about the definition, health consequences of excessive intake, food sources, label reading, and healthy alternatives to foods containing high amounts of added sugar. Dependent variables were dietary data and anthropometrics. Independent variable was the group assignment. Results: In the intervention group, reduction of 58.3% of added sugar intake occurred , and added sugar contributed to 4.95% of the total energy. In the control group, it contributed to 10.7% of the total energy. Conclusion: The nutrition education intervention was effective in reducing over half the students' added sugar consumption in the intervention group. The used nutrition education intervention could be adopted effectively in the community to limit added sugar intake.
... When using social-media-based interventions, these benefits have shown to improve nutritional status, such as improved weight management and dietary fat consumption [54,55]. These benefits are not isolated to only nutrition education, with improvements being seen in smoking cessation rates, quality of life scores, reduced medical visits, along with reduced rates of suicidal ideation and improved symptoms of cancer-related depression [56][57][58][59]. However, these benefits appear to be isolated to private discussion groups rather than public social media posts. ...
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Health promoters have been unable to reach and engage people on social media (SM) to the extent that food industry brands and lifestyle personalities have. The objective of this study was to identify the SM post strategies associated with higher engagement in nutrition and food-related posts using a retrospective content analysis. The six most engaging posts from both Facebook and Instagram's 10 most successful nutrition and food-related accounts were analysed across four fields. Subjective and objective post strategies were coded on 736 posts, and associations with engagement were explored using the Least Absolute Shrinkage and Selection Operator (LASSO). Lifestyle personalities recorded the highest absolute engagement, while health promoters recorded the highest engagement relative to follower count. Strategies associated with higher Facebook engagement included using hashtags and prompting engagement through announcements, while on Instagram, higher engagement was associated with higher caption counts, providing health information links, prompting engagement through strategies that require an action, and using humorous strategies. Strategies associated with lower Instagram engagement included reposted content, general encouragement to eat strategies, encouragement to exercise strategies, not inducing any emotion/hedonic sensations, and providing a negative tone. Health promoters should adapt SM posts to the different SM platforms and utilise strategies associated with higher engagement to engage with their audience on SM.
... Online support groups for several medical conditions have progressively evolved with the expansion of Internet use. [1][2][3][4] A Cochrane review evaluated the effect of online breast cancer support groups on women's emotional distress, uncertainty, anxiety, depression, and quality of life. It included online support groups in six trials that lasted 6 to 30 weeks and included eight to 15 members. ...
... Plusieurs travaux ont montré que l'absence de soignants dans les forums facilite le partage d'expériences entre les internautes et fournit ainsi des contenus propres aux ressentis des patients (Harry et al., 2008 ;Medina et al., 2013). Nous avons donc sélectionné deux forums francophones dédiés au diabète : LesDiabétiques 3 et FemmesDiabétiques 4 . ...
Les forums de discussion en santé sont des sources précieuses pour l’éducation thérapeutique. Il est ainsi possible d’étudier le comportement des contributeurs mais aussi leur compréhension de la maladie et leurs besoins face à leurs problèmes de santé. Cependant, l’analyse des échanges et des comportements nécessite de disposer d’informations démographiques sur les intervenants. Nous présentons une approche combinant des lexiques et des ressources terminologiques à des classifieurs supervisés pour identifier la tranche d’âge, le genre des utilisateurs, leur maladie et la relation entre l’auteur du message et le patient. Notre approche est testée sur des forums de discussion en français liés au diabète. Les résultats obtenus sont variables suivant les informations recherchées. L’identification du genre et de la tranche d’âge est de bonne qualité tandis que l’extraction de la maladie ou du statut du contributeur est plus difficile mais encourageante.
... When seeking sources of information and support other than during appointments with physicians, many persons living with, or affected by, chronic disease turn to the Internet. Scholars have investigated online support groups, including those concerned with cardiovascular disease, kidney disease, and Huntington's disease (Coulson, Buchanan, and Aubeeluck 2007;Medina, Loques, and Mesquita 2013;Nicholas et al. 2009). More particularly, others have considered online networks for parents of children with chronic diseases (Nordfeldt, Ängarne-Lindberg, Nordwall, and Krevers 2013;Swallow et al. 2012). ...
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Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as "incompatible with life," physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community-including learning from blogs and online forums- employ palliative care practices, and seek more accurate, descriptive language that is compatible with care.
Les dernières années ont vu se développer les forums de santé en ligne, lieux virtuels d’échange d’informations consacrés au thème de la santé ou de la maladie. Considérés comme un média d’apprentissage informel, certains ont la particularité d’être indépendants des lieux de soins car modérés par des patients. Les échanges y sont plus authentiques, car moins soumis à la désirabilité sociale. Actuellement, au regard de leurs propriétés formatrices, l’autoformation paraît pertinente pour analyser le processus d’apprentissage sur les forums. Pour mieux comprendre le fonctionnement et l’intérêt de ces forums, ce travail vise à en identifier les circonstances et les conditions d’utilisation par les internautes, et à caractériser l’apprentissage au moyen de ces forums. Dans une approche rétrospective et qualitative, l’auteur a choisi des méthodes de recueil et d’analyse mixtes. En effet, l’analyse qualitative de 30 entretiens réalisés avec des internautes complète l’analyse quantitative de 1319 messages postés par 40 utilisateurs du même forum. Leur exploration porte sur le profil des utilisateurs, les raisons, le moment et la manière d’utilisation du forum, les contenus abordés, l’utilisation des informations échangées, et les formes et modes d’apprentissage. Ce média constitue pour les utilisateurs un outil complet, respectueux de leur rythme et de leurs besoins d’apprentissage. Les résultats relèvent des traces d’apprentissage intentionnel ainsi que de plusieurs niveaux d’apprentissage en simultané et cela en dépit de l’absence des soignants et du fait que le forum n’est pas spécifiquement conçu pour l’apprentissage. Ce constat soutient l’hypothèse qu’une partie des apprentissages est liée à son utilisation et qu’il est un moyen propice à l’autoformation. Il est complémentaire des programmes d’éducation thérapeutique du patient et pourraient se rapporter à l’éducation thérapeutique de suivi et de renforcement. Les résultats soulignent l’importance du développement de l’esprit critique vis-à-vis des informations en tant que compétence d’adaptation chez les patients. Ils invitent à réfléchir quant aux rôles et moyens des intervenants officiels des forums que sont les modérateurs dans ce processus d’évolution cognitive.
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INTRODUÇÃO: A identificação dos fatores de risco pré-operatórios na cirurgia valvar visa à melhoria do resultado cirúrgico por meio da neutralização de fatores relacionados à mortalidade aumentada. Este estudo tem por objetivo identificar fatores de risco para mortalidade hospitalar em pacientes submetidos a implante de prótese valvar mecânica. MÉTODOS: Estudo prospectivo com aquisição retrospectiva de dados com 335 pacientes consecutivamente submetidos ao implante de prótese mecânica St Jude Medical, entre dezembro de 1994 e setembro de 2005, no Instituto de Cardiologia do RS, sendo 158 aórticos, 146 mitrais e 31 mitro-aórticos. Foi analisada a relação da mortalidade hospitalar com características demográficas e operatórias dos pacientes: sexo, idade, índice de massa corporal, classe funcional (NYHA), fração de ejeção, lesão valvar, hipertensão arterial sistêmica, diabete melito, creatinina, arritmia cardíaca, cirurgia cardíaca prévia, revascularização miocárdica, plastia tricúspide concomitante e caráter da cirurgia (eletivo, de urgência ou de emergência). Utilizada regressão logística para identificar os fatores de risco e quantificada sua influência pelo cálculo de odds-ratio. RESULTADOS: Ocorreram 13 (3,88%) óbitos hospitalares. Características relacionadas à mortalidade aumentada foram creatinina sérica (P
Conference Paper
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To address the needs of cancer patients and their caregivers, Microsoft Research and the Fred Hutchinson Cancer Research Center developed HutchWorld, an online community environment, to provide computer-mediated social and informational support. In a controlled clinical study, we deployed HutchWorld to bone marrow transplant patients and their caregivers and assessed the impact of Internet access and HutchWorld on their quality of life. We found that Internet access and the use of HutchWorld helped to buffer study participants against reductions in life satisfaction and social support following the transplant procedure. In particular, participants used the Internet to seek out support from family and friends
Conference Paper
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This article presents a preliminary study on the emotional world of health online communities. Using sentiment analysis and natural language processing techniques, this study aims to (1) examine the strength of various kinds of emotions (positivity, optimism, negativity, anxiety, anger, and sadness) in online health forum discussions, and (2) compare the emotional status and expression of forum participants under different roles, such as askers and answerers, men and women, and caregivers and patients. This study is expected to improve the understanding of the emotional communication in online health communities.
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An epilepsy community was developed on to share data between patients to improve their outcomes by finding other patients like them. In a 14-day response period, 221 patients with epilepsy (mean age: 40 years, SD: 12, range: 17-72, 66% female) completed a survey about benefits they perceived. Prior to using the site, a third of respondents (30%) did not know anyone else with epilepsy with whom they could talk; of these, 63% now had at least one other patient with whom they could connect. Perceived benefits included: finding another patient experiencing the same symptoms (59%), gaining a better understanding of seizures (58%), and learning more about symptoms or treatments (55%). Number of benefits was associated with number of relationships with other patients, F(4,216)=8.173, P<0.001). Patients with epilepsy reported an array of perceived benefits similar to those reported by populations with other diseases. Controlled sharing of health data may have the potential to improve disease self-management of people with epilepsy.
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This paper investigates the usefulness of a modest-budget website set up to support people recovering from heart-related incidents through a combination of all or some of the following: surgery, drugs, and lifestyle change. Online communities have been shown to offer support for their members. Ideally, the members of this experimental site would eventually constitute an online community. Effective interaction and personal communication indicate that an online community is developing. The opposite is also true: declining and aborted exchanges might indicate a failure to establish community. This paper reports on the first eight weeks of the experimental website HeartNET. As a result of findings during phase one, researchers are radically rethinking the second phase of the research project. Even so, the early findings include some evidence of effective communication and hint that phase two may see the emergence of online community.
Surveys show an increased reliance on physician and patient social networks, which promise to transform healthcare management. But challenges such as privacy and data accuracy remain.
Peripartum cardiomyopathy (PPCM), a form of acute heart failure, is a life-altering condition affecting thousands of pregnant or postpartum women. Little is known about the overall impact of PPCM on women's lives. To describe the contents of postings made on the My Space® PPCM support group Web site by women diagnosed with PPCM. A mixed methods design. Two hundred and forty-seven postings made by 156 people from 2005 to 2008 were copied from the Web site. Key words and phrases were sorted into categories, quantified, and then arranged into themes using the five interacting variables of the Neuman Systems Model: physiological, psychological, sociocultural, spiritual, and developmental. Six themes identified in the postings were discussion of symptomology, exchange of advice, interactions with healthcare providers, uncertainty about subsequent pregnancies, expressions of spirituality, and recovery from heart failure. Misdiagnosis and subsequent pregnancies were major stressors that have implications for nursing practice and future research. Nurses can help women with PPCM and their families reconstitute their lives to a new normal by providing reliable information and counseling on treatment, prognosis, and family planning.
The Web empowers a diverse population of users and this is reflected in both the demography and interests of today’s on-line communities. Many of these communities provide an essential social function by enabling people with medical or personal problems to discuss their concerns with others. Physicians can provide the facts, but other patients can tell you what it really feels like and what to expect next, in a way that only someone with personal experience can. A study of the messages from an on-line medical support group shows that empathy is an essential ingredient in participants’ discussions. Better tools are needed to empower patients to help themselves by finding information and contacting other patients in bulletin board communities. Suggestions about the nature of these tools are discussed. In particular, supporting a balance between empathic and factual communication is stressed.
Peripartum cardiomyopathy is a devastating condition in which women without a previously identified heart condition experience heart failure in the ninth month of pregnancy or in the first 5 months after delivery of a baby. Online support groups are virtual communities for people affected by the same social or health issue. No literature exists on the benefits of women involved in an online support group for peripartum cardiomyopathy. The purpose of this descriptive study was to determine the benefits of participation in the online support group for peripartum cardiomyopathy based on a survey of active members of the group. All contacts between researchers and respondents were through e-mail. A survey of open-ended and Likert-type questions was used. Twelve women, aged 19 to 34 years, participated; all had a diagnosis of peripartum cardiomyopathy. This online support group is a vital resource for women with peripartum cardiomyopathy. Benefits to participation in the online support group included getting and sharing information, exchanging stories, being understood by other women, and gaining hope. Nurse practice implications include referring patients to reputable Web sites and support groups and serving as a professional facilitator in an online group.