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  <front>
    <journal-meta>
      <journal-id journal-id-type="publisher-id">abc</journal-id>
      <journal-title-group>
        <journal-title>Arquivos Brasileiros de Cardiologia</journal-title>
        <abbrev-journal-title abbrev-type="publisher">Arq. Bras. Cardiol.</abbrev-journal-title>
      </journal-title-group>
      <issn pub-type="ppub">0066-782X</issn>
      <issn pub-type="epub">1678-4170</issn>
      <publisher>
        <publisher-name>Sociedade Brasileira de Cardiologia - SBC</publisher-name>
        <publisher-loc>S&#227;o Paulo, SP, Brazil</publisher-loc>
      </publisher>
    </journal-meta>
    <article-meta>
      <article-id pub-id-type="publisher-id" specific-use="scielo-v3">Y53mQh7dcWkhnGZXJYsjKyp</article-id>
      <article-id pub-id-type="publisher-id" specific-use="scielo-v2">S0066-782X2013002800020</article-id>
      <article-id pub-id-type="publisher-id" specific-use="scielo-v1">S0066-782X(13)10100200020</article-id>
      <article-id pub-id-type="doi">10.5935/abc.20130161</article-id>
      <article-categories>
        <subj-group subj-group-type="heading">
          <subject>Atualiza&#231;&#227;o Cl&#237;nica</subject>
        </subj-group>
      </article-categories>
      <title-group>
        <article-title>Redes sociais de sa&#250;de como grupos de suporte online na vida de pacientes com doen&#231;as cardiovasculares</article-title>
      </title-group>
      <contrib-group>
        <contrib contrib-type="author">
          <name>
            <surname>Medina</surname>
            <given-names>Edhelmira Lima</given-names>
          </name>
          <xref ref-type="aff" rid="aff01"/>
        </contrib>
        <contrib contrib-type="author">
          <name>
            <surname>Loques Filho</surname>
            <given-names>Orlando</given-names>
          </name>
          <xref ref-type="aff" rid="aff01"/>
        </contrib>
        <contrib contrib-type="author">
          <name>
            <surname>Mesquita</surname>
            <given-names>Cl&#225;udio Tinoco</given-names>
          </name>
          <xref ref-type="aff" rid="aff02"/>
        </contrib>
      </contrib-group>
      <aff id="aff01">
        <addr-line>
          <named-content content-type="state">Rio de Janeiro</named-content>
        </addr-line>
        <institution content-type="orgname">Universidade Federal Fluminense</institution>
        <institution content-type="orgdiv1">Instituto de Computa&#231;&#227;o </institution>
        <country country="BR">Brazil</country>
      </aff>
      <aff id="aff02">
        <addr-line>
          <named-content content-type="city">Niter&#243;i</named-content>
          <named-content content-type="state">Rio de Janeiro</named-content>
        </addr-line>
        <institution content-type="orgname">Universidade Federal Fluminense</institution>
        <institution content-type="orgdiv1">Hospital Universit&#225;rio Ant&#244;nio Pedro </institution>
        <country country="BR">Brazil</country>
      </aff>
      <pub-date date-type="collection" publication-format="electronic">
        <month>08</month>
        <year>2013</year>
      </pub-date>
      <volume>101</volume>
      <issue>2</issue>
      <fpage>e39</fpage>
      <lpage>e45</lpage>
      <history>
        <date date-type="received">
          <day>10</day>
          <month>12</month>
          <year>2012</year>
        </date>
        <date date-type="accepted">
          <day>14</day>
          <month>03</month>
          <year>2013</year>
        </date>
        <date date-type="rev-recd">
          <day>19</day>
          <month>12</month>
          <year>2012</year>
        </date>
      </history>
      <permissions>
        <license license-type="open-access" xlink:href="http://creativecommons.org/licenses/by-nc/4.0/" xml:lang="en">
          <license-p>This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.</license-p>
        </license>
      </permissions>
      <abstract>
        <p>Existe um aumento no conjunto de pacientes que utilizam a internet em busca de informa&#231;&#245;es que possam melhorar suas condi&#231;&#245;es de sa&#250;de. Nele, distinguem-se pacientes que procuram ambientes virtuais para expor experi&#234;ncias, d&#250;vidas, opini&#245;es, emo&#231;&#245;es e inclusive criar relacionamentos visando dar ou receber apoio. Nesse sentido, h&#225; uma crescente necessidade de estudar como estes ambientes podem repercutir na sa&#250;de dos pacientes. Este artigo tem por objetivo identificar na literatura cient&#237;fica estudos sobre a prolifera&#231;&#227;o e impacto das comunidades virtuais conhecidas como Redes Sociais de Sa&#250;de ou Grupos de Suporte Online, voltados para doen&#231;as cardiovasculares, que podem ser &#250;teis aos pacientes com determinadas doen&#231;as, permitindo-lhes obter informa&#231;&#227;o e apoio emocional. Para o levantamento bibliogr&#225;fico, foi realizada revis&#227;o sistem&#225;tica da literatura com artigos publicados entre 2007-2012, nas bases de dados PubMed, Association for Computing Machinery e Institute of Electrical and Electronic Engineer, que se encontram relacionados com o tema proposto, e foram selecionados quatro artigos, segundo os crit&#233;rios de inclus&#227;o dos m&#233;todos. Os resultados encontrados revelam dados interessantes, relevantes segundo o aspecto de sa&#250;de, os quais podem trazer alguns benef&#237;cios terap&#234;uticos, destacando: provis&#227;o de suporte emocional, maior ades&#227;o ao tratamento, compartilhamento de informa&#231;&#227;o sobre as doen&#231;as e obten&#231;&#227;o de experi&#234;ncias de vida.</p>
      </abstract>
      <kwd-group xml:lang="pt" kwd-group-type="author-generated">
        <kwd>Doen&#231;as Cardiovasculares</kwd>
        <kwd>Rede Social</kwd>
        <kwd>F&#243;runs de Discuss&#227;o</kwd>
        <kwd>Servi&#231;os de Informa&#231;&#227;o</kwd>
        <kwd>Troca de Informa&#231;&#245;es</kwd>
      </kwd-group>
      <pub-date publication-format="electronic" date-type="pub">
        <day>09</day>
        <month>09</month>
        <year>2013</year>
      </pub-date>
    </article-meta>
  </front>
  <body>
    <p>
      <bold>ATUALIZA&#199;&#195;O CL&#205;NICA</bold>
    </p>
    <p>
      <bold>Redes sociais de sa&#250;de como grupos de suporte online na vida de pacientes com doen&#231;as cardiovasculares</bold>
    </p>
    <p>
      <bold>Edhelmira Lima Medina<sup>I</sup>; Orlando Loques Filho<sup>I</sup>; Cl&#225;udio Tinoco Mesquita<sup>II</sup></bold>
    </p>
    <p><sup>I</sup>Instituto de Computa&#231;&#227;o - Universidade Federal Fluminense </p>
    <p><sup>II</sup>Hospital Universit&#225;rio Ant&#244;nio Pedro - Universidade Federal Fluminense, Niter&#243;i, RJ - Brasil</p>
    <p>
      <xref ref-type="corresp" rid="end">Correspond&#234;ncia</xref>
    </p>
    <p>
      <bold>RESUMO</bold>
    </p>
    <p>Existe um aumento no conjunto de pacientes que utilizam a internet em busca de informa&#231;&#245;es que possam melhorar suas condi&#231;&#245;es de sa&#250;de. Nele, distinguem-se pacientes que procuram ambientes virtuais para expor experi&#234;ncias, d&#250;vidas, opini&#245;es, emo&#231;&#245;es e inclusive criar relacionamentos visando dar ou receber apoio. Nesse sentido, h&#225; uma crescente necessidade de estudar como estes ambientes podem repercutir na sa&#250;de dos pacientes. </p>
    <p> Este artigo tem por objetivo identificar na literatura cient&#237;fica estudos sobre a prolifera&#231;&#227;o e impacto das comunidades virtuais conhecidas como Redes Sociais de Sa&#250;de ou Grupos de Suporte <italic>Online</italic>, voltados para doen&#231;as cardiovasculares, que podem ser &#250;teis aos pacientes com determinadas doen&#231;as, permitindo-lhes obter informa&#231;&#227;o e apoio emocional. Para o levantamento bibliogr&#225;fico, foi realizada revis&#227;o sistem&#225;tica da literatura com artigos publicados entre 2007-2012, nas bases de dados PubMed, <italic>Association for Computing Machinery e Institute of Electrical and Electronic Engineer</italic>, que se encontram relacionados com o tema proposto, e foram selecionados quatro artigos, segundo os crit&#233;rios de inclus&#227;o dos m&#233;todos. </p>
    <p> Os resultados encontrados revelam dados interessantes, relevantes segundo o aspecto de sa&#250;de, os quais podem trazer alguns benef&#237;cios terap&#234;uticos, destacando: provis&#227;o de suporte emocional, maior ades&#227;o ao tratamento, compartilhamento de informa&#231;&#227;o sobre as doen&#231;as e obten&#231;&#227;o de experi&#234;ncias de vida.</p>
    <p><bold>Palavras-chave:</bold> Doen&#231;as Cardiovasculares, Rede Social, F&#243;runs de Discuss&#227;o, Servi&#231;os de Informa&#231;&#227;o, Troca de Informa&#231;&#245;es.</p>
    <p>
      <bold>Introdu&#231;&#227;o</bold>
    </p>
    <p>No mundo, cerca de dois milh&#245;es de novos indiv&#237;duos s&#227;o diagnosticados com doen&#231;as cardiovasculares a cada ano<sup>1</sup>. Os pacientes que convivem com essa doen&#231;a cr&#244;nica, al&#233;m de necessitarem de um monitoramento detalhado de seu estado de sa&#250;de, precisam de apoio emocional para lidar com problemas de dif&#237;cil tratamento. Nesse sentido, Redes Sociais de Sa&#250;de<sup>2</sup> s&#227;o ambientes virtuais onde se formam Grupos de Suporte <italic>Online</italic> e apresentam-se como uma alternativa para a busca de participa&#231;&#227;o em grupos, que visem criar relacionamentos do paciente com outras pessoas de interesses afins (<xref ref-type="fig" rid="a20fig01">Figura 1</xref>).</p>
    <p content-type="asset">
      <fig id="a20fig01">
        <graphic xlink:href="1678-4170-abc-101-02-0e39-30161-gf01.jpg"/></fig>
    </p>
    <p>De acordo com a UIT<xref ref-type="fn" rid="fn1a"><sup>1</sup></xref>, atualmente mais que um bilh&#227;o de pessoas utiliza as Redes Sociais no mundo. O Brasil ocupa o quarto lugar entre os pa&#237;ses com maior participa&#231;&#227;o nas Redes Sociais, segundo estudo da <italic>comScore</italic><xref ref-type="fn" rid="fn2a"><sup>2</sup></xref>. No contexto das Redes Sociais, distinguem-se conjuntos de indiv&#237;duos, compostos por pacientes, que procuram por ambientes espec&#237;ficos para expor experi&#234;ncias, d&#250;vidas, opini&#245;es e at&#233; emo&#231;&#245;es. Consequentemente, existe a necessidade urgente de investigar como esses ambientes influenciam nos aspectos da sa&#250;de. Procurando cobrir essa lacuna, selecionamos diversos trabalhos<sup>3-5</sup>, que destacam aspectos como: oportunidade para melhorar a qualidade de vida; an&#225;lise de comportamento e emo&#231;&#245;es; an&#225;lise de conte&#250;dos; oferecimento de suporte terap&#234;utico; etc., fatores que podem ser utilizados para identificar os benef&#237;cios advindos da participa&#231;&#227;o nesses grupos.</p>
    <p>Embora exista uma grande prolifera&#231;&#227;o de Grupos de Suporte <italic>Online</italic> orientados &#224; sa&#250;de e o Brasil figure entre os maiores usu&#225;rios de Redes Sociais, o estudo deles &#233; pouco abordado. Contudo, a divulga&#231;&#227;o da tecnologia e o crescimento do n&#250;mero de pacientes com doen&#231;as cr&#244;nicas v&#234;m motivando o aparecimento de propostas destes grupos no contexto nacional. Por exemplo, o Orkut, um dos maiores sites de relacionamento no Brasil, possui diversas comunidades de pacientes com grande n&#250;mero de usu&#225;rios, tais como: "Hipertens&#227;o / Press&#227;o Alta", com quase tr&#234;s mil participantes, e "Diabetes", com mais de 20 mil participantes. Isso mostra o potencial e a demanda desse tipo de ambiente <italic>online</italic>.</p>
    <p>Desta forma, os principais objetivos deste artigo s&#227;o apresentar resultados de uma revis&#227;o da literatura sobre a utiliza&#231;&#227;o de Grupos de Suporte <italic>Online</italic> em contextos terap&#234;uticos e identificar suas influ&#234;ncias e impactos (positivos ou negativos) em pacientes com doen&#231;as cardiovasculares.</p>
    <p>
      <bold>M&#233;todos</bold>
    </p>
    <p>Como o estudo est&#225; focado na tem&#225;tica de doen&#231;as card&#237;acas, fez-se uma revis&#227;o sistem&#225;tica da literatura, com artigos publicados no per&#237;odo de 2007 a 2012, coletados nas seguintes bases de dados: PubMed, ACM<xref ref-type="fn" rid="fn3a"><sup><italic>3</italic></sup></xref> e IEEE<xref ref-type="fn" rid="fn4a"><sup>4</sup></xref>. A busca por artigos cient&#237;ficos foi espec&#237;fica &#224;queles que fazem o estudo da utiliza&#231;&#227;o de Redes Sociais de Sa&#250;de em pessoas com problemas cardiovasculares, por&#233;m, nenhum resultado foi obtido com essa palavra-chave e se optou por utilizar Grupos de Suporte <italic>Online</italic>.</p>
    <p>Foram utilizados termos como: <italic>social network, support groups, virtual communities</italic>, o<italic>nline patient social network</italic>, relacionando-os com os seguintes descritores de sa&#250;de: <italic>heart, cardiac failure, cardiovascular disease, hypertension patients, </italic>e <italic>health</italic>, de forma singular e associada. Todos esses termos de sa&#250;de fazem parte do vocabul&#225;rio <italic>Medical Subject Headings</italic> (MeSH). Para a base PubMed, a busca foi realizada apenas utilizando o termo <italic>online support groups e heatlh virtual communities, </italic>sem os associar aos outros descritores, por se tratar de uma base sobre sa&#250;de.</p>
    <p>J&#225; na IEEEXplore, foram relacionados os termos <italic>social network</italic> e <italic>health online</italic> para a pesquisa<italic>.</italic> Por fim, na base ACM, a busca relacionou todos os descritores, associando-os de forma que o termo principal, <italic>online support groups</italic>, fosse combinado aos descritores de sa&#250;de <italic>diseases</italic>, <italic>medicine</italic>, <italic>patients, heart</italic> e <italic>health. </italic>Por outro lado, os crit&#233;rios de exclus&#227;o considerados s&#227;o: os artigos que n&#227;o apresentem informa&#231;&#227;o completa; os artigos n&#227;o relacionados com doen&#231;as cardiovasculares.</p>
    <p>
      <bold>Resultados</bold>
    </p>
    <p>De acordo com os crit&#233;rios de inclus&#227;o definidos, foram selecionados quatro artigos cujos resumos encontram-se na <xref ref-type="table" rid="a20tab01">Tabela 1</xref>. Estes artigos apresentam informa&#231;&#245;es sobre Grupos de Suporte <italic>Online</italic>, que &#233; uma das etiquetas de varia&#231;&#227;o de Rede Social de Sa&#250;de para pacientes com doen&#231;as cardiovasculares. Nota-se que nenhum artigo em l&#237;ngua portuguesa foi localizado para an&#225;lise. A seguir, descrevemos cada um deles.</p>
    <p content-type="asset">
      <table-wrap id="a20tab01">
        <graphic xlink:href="1678-4170-abc-101-02-0e39-30161-gt01.jpg"/></table-wrap>
    </p>
    <p>
      <bold>Grupo de Suporte HeartNet</bold>
    </p>
    <p>Um estudo pioneiro sobre o impacto das comunidades <italic>online</italic> de pacientes com problemas card&#237;acos foi realizado em 2007 por Bonniface e cols.<sup>6</sup>. A<italic> National Heart Foundation</italic> (WA <italic>Division</italic>) desenvolveu um Grupo de Suporte <italic>Online</italic> em parceria com a <italic>Edith Cowan University</italic>. Esta comunidade virtual, com formato de f&#243;rum de discuss&#227;o chamado de "<italic>HeartNe</italic>t", teve como objetivo avaliar se esses ambientes virtuais influenciam ou incentivam a pr&#225;tica do sentimento de empatia entre seus membros.</p>
    <p>As amostras utilizadas (cerca de 600 membros) foram pessoas com a mesma doen&#231;a, mesmo n&#237;vel de instru&#231;&#227;o, mesma classe social e idades similares. A partir desses dados, fazendo uso de t&#233;cnicas qualitativas e sociais (i.e. observa&#231;&#227;o e an&#225;lise em entrevistas), o trabalho identificou seis caracter&#237;sticas principais detectadas dentro das conversas dos participantes, especificamente:</p>
    <p>O suporte m&#250;tuo (<italic>Mutual support</italic>): caracteriza a intera&#231;&#227;o de receber e trocar informa&#231;&#227;o entre pacientes e identifica um sentimento da empatia do tipo emocional. Isto est&#225; baseado no fato de que alguns pacientes submeteram informa&#231;&#227;o das suas pr&#243;prias experi&#234;ncias, e estas serviram como resposta &#224;s d&#250;vidas ou perguntas dos pacientes seguidores. Estes &#250;ltimos assumiam o compromisso de motivar os antecessores no cuidado de suas sa&#250;des. Segundo os autores as frases "<italic>well done, hang in there or good luck</italic>" eram frequentes como coment&#225;rio de motiva&#231;&#227;o. Por exemplo, abaixo um fragmento do coment&#225;rio de um dos pacientes que est&#225; citado na publica&#231;&#227;o do artigo<sup>6 </sup>de HeartNet.</p>
    <p>
      <italic>"... 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."</italic>
      <xref ref-type="fn" rid="fn5a">
        <sup>5</sup>
      </xref>
    </p>
    <p>A autoajuda (<italic>Support seeking as self-help</italic>): foi identificada em algumas mensagens dos participantes, onde se pode perceber que, apesar de n&#227;o receberem respostas diretas aos coment&#225;rios por eles publicados, terminam em geral com uma frase de agradecimento. Segundo os autores, isso significava que os participantes de alguma forma perceberam que estavam sendo ouvidos. Por exemplo, aqui um fragmento do coment&#225;rio de Dixie:</p>
    <p>
      <italic>"... 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."</italic>
      <xref ref-type="fn" rid="fn6a">
        <sup>6</sup>
      </xref>
    </p>
    <p>Dar apoio como forma de pagamento (<italic>Support giving as stored currency or debt paying</italic>): esse item est&#225; relacionado com a cultura de reciprocidade. Significa que os sentimentos de reciprocidade davam-se no momento em que os pacientes retornaram/voltaram ao f&#243;rum logo ap&#243;s terem conclu&#237;do seus tratamentos (terem curado suas <italic>doen&#231;as</italic>). Esses fatos implicam que os pacientes ficaram cientes da import&#226;ncia de suas participa&#231;&#245;es e assumiram uma atitude de responsabilidade, retribuindo o apoio recebido dentro do grupo. Por exemplo, aqui o coment&#225;rio de Margo:</p>
    <p>
      <italic>"... 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."</italic>
      <xref ref-type="fn" rid="fn7a">
        <sup>7</sup>
      </xref>
    </p>
    <p>Moderar informa&#231;&#245;es (<italic>Moderating information</italic>): considerado tamb&#233;m como uma caracter&#237;stica importante detectada dentre os resultados. Trata-se do controle da informa&#231;&#227;o que o moderador do grupo possuiu e que, basicamente, estava focado em reduzir riscos associados com opini&#245;es err&#244;neas ou mal intencionadas, identificadas nas conversas dos pacientes.</p>
    <p>Dilema de compartilhar (<italic>dilemma of sharing</italic>): essa caracter&#237;stica associa dois tipos de comportamentos detectados no grupo: o primeiro comportamento contradit&#243;rio era o fato de compartilhar problemas de sa&#250;de e, ao mesmo tempo, desejar manter a privacidade (di&#225;logo interno). Por exemplo, vejamos aqui a postagem de Cherie:</p>
    <p>
      <italic>"...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..."</italic>
      <xref ref-type="fn" rid="fn8a">
        <sup>8</sup>
      </xref>
    </p>
    <p>O segundo comportamento era relacionado &#224; atua&#231;&#227;o do paciente dentro do grupo, no sentido de fornecedor de suporte (ou seja, o problema dele era menor do que os outros), ou como receptor (ou seja, visando atrair maior aten&#231;&#227;o como v&#237;tima da doen&#231;a). Este &#250;ltimo caso foi considerado como uma concorr&#234;ncia negativa, j&#225; que esse comportamento poderia resultar no des&#226;nimo das participa&#231;&#245;es dos outros membros do grupo.</p>
    <p>Entretanto, analisando todas as intera&#231;&#245;es n&#227;o se p&#244;de concluir que todas eram ben&#233;ficas para os participantes. Foi identificado que existiram situa&#231;&#245;es que implicavam o contr&#225;rio, o que foi nomeado pelos autores como uma caracter&#237;stica de suporte n&#227;o correspondido.</p>
    <p>Suporte n&#227;o correspondido (<italic>support as bad debt</italic>): relacionado diretamente com a insatisfa&#231;&#227;o causada pela falta de reciprocidade nas mensagens. Esse tipo de insatisfa&#231;&#227;o levou alguns pacientes a sentirem frustra&#231;&#227;o, ou desmotiva&#231;&#227;o, para continuar participando do grupo.</p>
    <p>Da an&#225;lise dessas caracter&#237;sticas, notou-se que o Grupo de Suporte <italic>Online</italic> teve influ&#234;ncia em certas mudan&#231;as do comportamento dos pacientes. Por exemplo, o fato de que alguns deles disponibilizaram parte de seu tempo para responder quest&#245;es, publicar mensagens e abrir discuss&#245;es, foi considerado como um ato de filantropia. Conforme o trabalho "<italic>The Gift Economy</italic>" de David Cheal, este ato &#233; conhecido como a "economia do dom", que &#233; um conceito das ci&#234;ncias sociais que se refere &#224; cultura da d&#225;diva, sendo em Grupos de Suporte <italic>Online</italic>, o tempo dedicado como um bem doado &#224;s pessoas.</p>
    <p>Finalmente, a an&#225;lise das interven&#231;&#245;es dos participantes no grupo <italic>online</italic> sugere uma mudan&#231;a na qualidade de vida dos pacientes no sentido emocional, visto que ajudou a diminuir o isolamento dos pacientes, permitiu que acessassem um conjunto condensado de informa&#231;&#245;es e ofereceu mecanismos para aproveitar as experi&#234;ncias sobre determinadas doen&#231;as, o que resultou posteriormente em benef&#237;cio social. Tamb&#233;m &#233; preciso mencionar que essas caracter&#237;sticas foram avaliadas de forma subjetiva em um trabalho anterior<sup>7</sup> do mesmo autor no ano 2006, sendo a metade delas reconhecida como terap&#234;utica e ben&#233;fica para a qualidade de vida dos pacientes.</p>
    <p>
      <bold>Grupo de Suporte Controlado e n&#227;o Controlado</bold>
    </p>
    <p>J&#225; em 2009, Lindsay e cols.<sup>8</sup> desenvolveram um estudo comparativo, incluindo um Grupo de Suporte <italic>Online</italic> controlado (com a participa&#231;&#227;o de um moderador) e n&#227;o controlado (sem moderador), ambos focados em pacientes com problemas cardiovasculares. O objetivo deste estudo foi analisar a influ&#234;ncia de um ambiente controlado nas mudan&#231;as de comportamento ou conduta de sa&#250;de dos pacientes. Os moderadores (profissionais encarregados) estimularam a participa&#231;&#227;o dos pacientes, postando quest&#245;es e t&#243;picos de interesse visando facilitar o processo de colabora&#231;&#227;o e, desta forma, fomentar a aprendizagem de uma forma mais ativa e eficaz. Al&#233;m disso, eles (os moderadores) tinham a fun&#231;&#227;o de monitorar as discuss&#245;es, procurando criar um ambiente confort&#225;vel e cordial entre os participantes.</p>
    <p>O estudo teve como amostra 108 pacientes e realizou-se em uma comunidade pobre da Greater Manchester no Reino Unido. Foi concedido a cada participante um computador com a assinatura de um ano de acesso &#224; Internet. A pesquisa teve a dura&#231;&#227;o de nove meses e a avalia&#231;&#227;o foi dividida em duas fases. A primeira fase (controlada) durou seis meses e foi acompanhada por um moderador envolvido em uma fun&#231;&#227;o estrat&#233;gica, com limites e objetivos de discuss&#227;o estabelecidos no projeto para o grupo. Nessa fase, os participantes usaram duas formas de comunicar-se: uma usando diretamente o f&#243;rum e a outra atrav&#233;s do envio de mensagens individuais, sendo identificada a comunica&#231;&#227;o entre os pares. A segunda fase (n&#227;o controlada) durou os tr&#234;s meses restantes, sendo as interven&#231;&#245;es dos membros muitas vezes an&#244;nimas.</p>
    <p>Para identificar a situa&#231;&#227;o real dos participantes do Grupo de Suporte <italic>Online</italic> se utilizou um mesmo question&#225;rio nas duas fases. Este question&#225;rio incluiu perguntas sobre: hist&#243;rico de resid&#234;ncia, trabalho ou emprego, condi&#231;&#245;es de sa&#250;de e uso de planos de sa&#250;de. Para identificar as mudan&#231;as de comportamento ou conduta, foram aplicados testes semanalmente at&#233; o final do estudo. Estes testes estavam relacionados com exerc&#237;cios que serviram como indicadores na an&#225;lise dos resultados. Os exerc&#237;cios apresentados levavam em conta o n&#250;mero de vezes da participa&#231;&#227;o/intera&#231;&#227;o do paciente no grupo, grau de tabagismo (calculado pelo n&#250;mero de cigarros consumidos), controle de dieta (medido pelo consumo de alimentos pobres em gordura) e pelo n&#250;mero de vezes que os pacientes requereram uma consulta m&#233;dica.</p>
    <p>O estudo mostrou que, durante a primeira fase, houve um alto grau de participa&#231;&#227;o e suporte do grupo, refletido nos testes. J&#225; na segunda fase, logo ap&#243;s a sa&#237;da do moderador, n&#227;o se observaram mudan&#231;as significativas, mas deve ser mencionado que v&#225;rios participantes decidiram interagir utilizando o anonimato (s&#243; enviando mensagens privadas aos parceiros). Portanto, o fato de ter um ambiente controlado ou n&#227;o controlado n&#227;o afetou a conduta dos participantes de forma definitiva.</p>
    <p>Destacamos que durante a primeira fase (projeto controlado), os indicadores de dieta e consultas m&#233;dicas foram diminuindo levemente, mas a tend&#234;ncia n&#227;o se manteve igual na segunda fase, o que pode ser interpretado como um benef&#237;cio positivo de participar deste tipo de Grupos de Suporte <italic>Online </italic>com a presen&#231;a de um moderador.</p>
    <p>Finalmente, os autores reconheceram que o papel dos moderadores nesses ambientes &#233; chave para o processo de comunica&#231;&#227;o e tamb&#233;m para a sustentabilidade de boas condutas de sa&#250;de e, desta forma, reduzir as visitas ao m&#233;dico, benef&#237;cio que tamb&#233;m poderia ser aproveitado por idosos.</p>
    <p>
      <bold>Grupo de Miocardiopatia Periparto I</bold>
    </p>
    <p>Em 2010, Hess e cols.<sup>9</sup> foi publicado um estudo sobre as vantagens e desvantagens da participa&#231;&#227;o de mulheres diagnosticadas com miocardiopatia periparto (PPCM) em Grupos de Suporte <italic>Online</italic>. Os autores se enquadraram numa aprova&#231;&#227;o &#233;tica da <italic>Human Research Committee of Malone University, Canton, Ohio, EUA</italic>. Com esta aprova&#231;&#227;o se solicitou ao moderador do grupo <italic>online</italic> de PPCM o acesso aos dados das participantes (email e dados pessoais) e foi publicado no grupo um convite para a participa&#231;&#227;o do projeto. Desses convites, foram recebidas respostas de 23 mulheres que aceitaram participar do estudo; cada uma delas recebeu tr&#234;s documentos, especificamente: enquete sobre caracter&#237;sticas do Grupo de Suporte <italic>Online</italic>, consentimento da paciente e um question&#225;rio demogr&#225;fico.</p>
    <p>A enquete enviada foi uma adapta&#231;&#227;o da tese da Agnew LS do ano 2001, intitulada "Caracter&#237;sticas e benef&#237;cios de Grupos de Suporte Online para pacientes com C&#226;ncer". As 20 perguntas feitas foram do tipo aberta e estavam focadas nos seguintes temas: como elas conseguiram encontrar esse grupo; a frequ&#234;ncia de comunica&#231;&#227;o e participa&#231;&#227;o no grupo; como elas interagiam com outros membros; o que foi aprendido no grupo; quais eram os temas de conversa; como o grupo mudou suas vidas; se o grupo era considerado parte de sua fam&#237;lia; etc. Das respostas, foi poss&#237;vel distinguir: rea&#231;&#245;es emocionais (tristeza, medo, nojo e raiva), sentimentais (pessimismo, esperan&#231;a e coragem), comportamentos psicol&#243;gicos advindos da situa&#231;&#227;o que estavam passando, al&#233;m de transtornos como depress&#227;o e ansiedade.</p>
    <p>Os participantes tamb&#233;m ressaltaram alguns benef&#237;cios, como: obten&#231;&#227;o e compartilhamento de informa&#231;&#245;es sobre experi&#234;ncias da doen&#231;a, interc&#226;mbio de hist&#243;rias, compreens&#227;o e empatia. Neste ponto, o que mais chamou a aten&#231;&#227;o foi o coment&#225;rio de ganho de esperan&#231;a, j&#225; que elas mencionaram que era bom saber que existiam pessoas que torciam pela melhora das suas condi&#231;&#245;es de sa&#250;de. Por&#233;m, houve menor consenso sobre como o impacto de interagir no grupo influenciou nas suas qualidades de vida.</p>
    <p>O question&#225;rio demogr&#225;fico tamb&#233;m revelou informa&#231;&#245;es interessantes sobre as condi&#231;&#245;es sociais, estado civil, grau de instru&#231;&#227;o, faixa de idade (entre 19-34 anos), etc. O resultado deste question&#225;rio mostrou que as participantes encontraram/buscaram facilmente informa&#231;&#245;es na internet, o que as levou finalmente a fazer parte desse grupo.</p>
    <p>Finalmente, das an&#225;lises dos coment&#225;rios destacam-se as preocupa&#231;&#245;es que elas sentiam sobre suas doen&#231;as, risco de morte e gravidez. Hist&#243;rias de sucesso de mulheres que superaram a enfermidade e conseguiram ter filhos foram classificados como uma esperan&#231;a e uma experi&#234;ncia positiva para as participantes do grupo.</p>
    <p>
      <bold>Grupo de Miocardiopatia Periparto II</bold>
    </p>
    <p>Em 2012, Hess e cols.<sup>10</sup> apresentaram outro estudo com participantes com a mesma doen&#231;a acima mencionada, mas dessa vez usando uma amostra de 156 pacientes, os quais geraram 247 <italic>posts</italic> no grupo de PPCM criado em <italic>MySpace</italic>. O objetivo foi identificar no conte&#250;do postado aspectos fisiol&#243;gicos, psicol&#243;gicos, socioculturais, espirituais e de desenvolvimento pessoal (reconhecidos como vari&#225;veis do <italic>Neuman Systems Model</italic>).</p>
    <p>Para cada aspecto se distinguiu nas postagens: sintomas, troca de conselhos, intera&#231;&#245;es com os profissionais de sa&#250;de, incertezas sobre possibilidade de gravidez posterior, express&#245;es de espiritualidade e grau de possibilidade de recupera&#231;&#227;o da PPMC.</p>
    <p>Al&#233;m disso, nesse &#250;ltimo trabalho, explicitou-se o grau de relacionamento que as pacientes tiveram com os profissionais da sa&#250;de e as insatisfa&#231;&#245;es causadas por diagn&#243;sticos errados ou por incertezas, que causaram estresse &#224;s pacientes. Tamb&#233;m foi feita uma an&#225;lise sobre as implica&#231;&#245;es e a ajuda que os profissionais de enfermagem poderiam oferecer n&#227;o somente &#224;s pacientes, mas tamb&#233;m a seus familiares.</p>
    <p>
      <bold>Discuss&#227;o</bold>
    </p>
    <p>Atualmente, pacientes e familiares usam a internet como um aliado tecnol&#243;gico para compreender o processo sa&#250;de-doen&#231;a, informar-se sobre sintomas, medicamentos, abordagens terap&#234;uticas e discutir preocupa&#231;&#245;es em comum com outros pacientes. No Brasil, o tema de sa&#250;de em comunidades virtuais j&#225; est&#225; medianamente presente, com potencial de crescimento. Contudo, a maioria desses ambientes virtuais n&#227;o &#233; especializada em temas espec&#237;ficos de sa&#250;de, nem propiciam um ambiente ideal para os pacientes estabelecerem relacionamentos com seus assemelhados centrados numa doen&#231;a comum.</p>
    <p>Dos artigos analisados, foi poss&#237;vel perceber diversas implica&#231;&#245;es e potenciais benef&#237;cios advindos da participa&#231;&#227;o (e intera&#231;&#227;o) de pacientes em Grupos de Suporte <italic>Online, </italic>especificamente: benef&#237;cios de tratamento terap&#234;utico<sup>11-13</sup>, oportunidade de vida social a pacientes que vivem isolados, benef&#237;cios resultantes das experi&#234;ncias de outros e, talvez o mais importante, a possibilidade de apoio emocional. Aqui, vale destacar a presen&#231;a de moderadores (especialistas) nos grupos que ajudam a aproveitar/controlar/avaliar a qualidade da informa&#231;&#227;o que circula. Esse tipo de participante pode constituir um recurso chave no processo de interpreta&#231;&#227;o e adapta&#231;&#227;o da informa&#231;&#227;o criada nesses ambientes virtuais.</p>
    <p>Por outro lado, analisar e administrar grandes quantidades de dados, distinguindo-se entre fontes confi&#225;veis e n&#227;o confi&#225;veis, constituem uma tarefa complexa. Al&#233;m disso, n&#227;o permitem identificar sistematicamente comportamentos<sup>13</sup> ou transtornos psicol&#243;gicos dos participantes, podendo ocasionar a omiss&#227;o ou perda de informa&#231;&#245;es relevantes. Neste contexto, <italic>softwares</italic> inteligentes s&#227;o recursos adequados para extrair conhecimento utilizando t&#233;cnicas como minera&#231;&#227;o de dados (<italic>data mining</italic>) e an&#225;lises de sentimentos; essa &#250;ltima seria &#250;til para identificar comportamentos ocultos, tais como afli&#231;&#227;o, tristeza, ansiedade, etc., relacionados com as doen&#231;as dos pacientes.</p>
    <p>Finalmente, destaca-se que os resultados sobre o impacto destes ambientes virtuais s&#227;o promissores na sa&#250;de porque podem atuar como terapias adicionais e contribuir para a redu&#231;&#227;o de transtornos psicol&#243;gicos, como a ansiedade, depress&#227;o e estresse. Ainda assim, deve-se analisar e compreender mais extensivamente os riscos para pacientes emocionalmente sens&#237;veis que podem advir da comunica&#231;&#227;o e da exposi&#231;&#227;o da informa&#231;&#227;o em tais ambientes.</p>
    <p>
      <bold>Conclus&#245;es</bold>
    </p>
    <p>Os Grupos de Suporte <italic>Online</italic> representam um grande reposit&#243;rio de informa&#231;&#227;o de qualidade, relacionado a doen&#231;as em geral e espec&#237;ficas, como as cardiovasculares, e um ambiente adequado para prover ou criar uma comunidade de empatia e suporte entre participantes.</p>
    <p>A partir das experi&#234;ncias nos casos estudados e com ajuda de ferramentas computacionais, desenvolveu-se um projeto focado em pacientes com Insufici&#234;ncia Card&#237;aca que se detalha no <xref ref-type="app" rid="ape">Ap&#234;ndice I</xref>.</p>
    <p>
      <bold>Agradecimentos</bold>
    </p>
    <p>Os autores agradecem &#224; CAPES e &#224; FAPERJ pelo financiamento parcial deste trabalho.</p>
    <p>
      <bold>Contribui&#231;&#227;o dos autores</bold>
    </p>
    <p>Concep&#231;&#227;o e desenho da pesquisa e Reda&#231;&#227;o do manuscrito: Medina EL, Loques Filho OG, Mesquita CT; Obten&#231;&#227;o de dados e An&#225;lise e interpreta&#231;&#227;o dos dados: Medina EL, Mesquita CT; Obten&#231;&#227;o de financiamento e Revis&#227;o cr&#237;tica do manuscrito quanto ao conte&#250;do intelectual: Loques Filho OG.</p>
    <p>Declaro n&#227;o haver conflito de interesses pertinentes.</p>
    <p>O presente estudo foi parcialmente financiado pela Funda&#231;&#227;o Carlos Chagas Filho de Amparo &#224; Pesquisa do estado do Rio de Janeiro.</p>
    <p>Este artigo &#233; parte de disserta&#231;&#227;o de Mestrado de Edhelmira Lima Medina pela Universidade Federal Fluminense.</p>
    <p>Doen&#231;as Cardiovasculares, Rede Social, F&#243;runs de Discuss&#227;o, Servi&#231;os de Informa&#231;&#227;o, Troca de Informa&#231;&#245;es.</p>
    <p>
      <fn id="end" fn-type="corresp">
        <label>
          <bold>Correspond&#234;ncia:</bold>
        </label>
        <p> Edhelmira Lima Medina </p>
        <p> Av. Visconde do Rio Branco, 51, Centro </p>
        <p> CEP 24020-000, Niter&#243;i, RJ - Brasil </p>
        <p> E-mail: </p>
        <p><email xlink:href="edhyly@ic.uff.br">edhyly@ic.uff.br</email>, </p>
        <p>
          <email xlink:href="edhelime@gmail.com">edhelime@gmail.com</email>
        </p>
      </fn>
    </p>
    <p>Artigo recebido em 10/12/12; revisado em 19/12/12; aceito em 14/03/13.</p>
    <p>
      <fn id="fn1a">
        <label>1</label>
        <p> UIT - Uni&#227;o Internacional das Telecomunica&#231;&#245;es (relat&#243;rio "Tend&#234;ncias de Reformas das Telecomunica&#231;&#245;es"). </p>
      </fn>
      <fn id="fn2a">
        <label>2</label>
        <p> ComScore - </p>
        <p><ext-link ext-link-type="uri" xlink:href="http://www.comscore.com/">http://www.comscore.com/</ext-link> - especialista em medi&#231;&#245;es do mundo digital e intelig&#234;ncia de marketing digital- acessado em outubro 2012. </p>
      </fn>
      <fn id="fn3a">
        <label>3</label>
        <p> ACM (Association for Computing Machinery). </p>
      </fn>
      <fn id="fn4a">
        <label>4</label>
        <p> IEEE (Institute of Electrical and Electronic Engineer) s&#227;o refer&#234;ncias relevantes nas &#225;reas relacionadas de Ci&#234;ncia da Computa&#231;&#227;o </p>
      </fn>
      <fn id="fn5a">
        <label>5</label>
        <p> Tradu&#231;&#227;o: 'Eu sei pelo que voc&#234; esta passando e eu prometo que cada dia &#233; uma melhora, abra&#231;os para voc&#234;, lembre-se de que a dor vai passar e respire fundo. Vale a pena!' </p>
      </fn>
      <fn id="fn6a">
        <label>6</label>
        <p> Tradu&#231;&#227;o: 'Obrigada, eu precisava tirar isso fora. Ufa, um pouco mais de lagrimas curadoras. Isto &#233; bom, eu suponho! Obrigada pessoal, isso ajudou escrever sobre tudo isso' </p>
      </fn>
      <fn id="fn7a">
        <label>7</label>
        <p> Tradu&#231;&#227;o: 'Eu poderia estar-me sentindo bem agora, mas talvez daqui a 5 anos eu volte a precisar desse site novamente e se n&#243;s n&#227;o o apoiarmos e se n&#227;o estiver ai, eu voltaria ao ponto de partida.' </p>
      </fn>
      <fn id="fn8a">
        <label>8</label>
        <p> Tradu&#231;&#227;o: 'Eu n&#227;o queria falar sobre minha doen&#231;a... porque voc&#234;s sabem... eu n&#227;o quero muito insistir nisso... mas estou provavelmente mais motivado a ajudar aos outros que ainda n&#227;o passaram por esse processo...' </p>
      </fn>
      <fn id="fn9a">
        <label>9</label>
        <p>Rede Social 'Minha Sa&#250;de', dispon&#237;vel em</p>
        <p>
          <ext-link ext-link-type="uri" xlink:href="http://www.minhasaude.org">http://www.minhasaude.org</ext-link>
        </p>
      </fn>
    </p>
    <p>
      <bold label-of="ape">Ap&#234;ndice I</bold>
    </p>
    <p>Motivados pelas vantagens promissoras dos Grupos de Suporte <italic>Online</italic>, nosso grupo de pesquisa, junto com a participa&#231;&#227;o de profissionais da &#225;rea de Cardiologia do Hospital Universit&#225;rio Antonio Pedro de Niter&#243;i (HUAP), desenvolveu uma Rede Social de Sa&#250;de (RSS)<sup>*</sup> chamada de "Minha Sa&#250;de", que est&#225; orientada a pessoas com Insufici&#234;ncia Card&#237;aca. Essa RSS foi criada com o objetivo de proporcionar um espa&#231;o virtual, oferecendo aos pacientes e m&#233;dicos um lugar onde possam compartilhar informa&#231;&#245;es, tratamentos, experi&#234;ncias e, sobretudo, dar e receber apoio para lidar com suas preocupa&#231;&#245;es de sa&#250;de.</p>
    <p>Esta RSS, al&#233;m de contar com os m&#243;dulos t&#237;picos para armazenamento e gerenciamento de perfis cl&#237;nicos, conversar, postar, criar grupos e fazer amizade, conta com um m&#243;dulo Plano de Cuidados , atrav&#233;s do qual o paciente desde qualquer dispositivo com conex&#227;o a internet (<italic>desktop</italic>, <italic>laptop</italic>, <italic>tablet</italic>, celular) pode fazer seu controle de sa&#250;de inserindo dados fisiol&#243;gicos (e.g., press&#227;o arterial, temperatura, peso, frequ&#234;ncia card&#237;aca), atividades di&#225;rias (ex. correr, pedalar, caminhar, etc.), estados emocionais e situa&#231;&#245;es ou sintomas (ex. desmaio, incha&#231;o nos p&#233;s, dor de cabe&#231;a, zumbido, etc.) que est&#225; sofrendo no momento.</p>
    <p>Vale mencionar que tamb&#233;m &#233; poss&#237;vel a captura de dados fisiol&#243;gicos diretamente de aparelhos m&#233;dicos com comunica&#231;&#227;o sem fio. Todos os dados coletados ser&#227;o armazenados em um reposit&#243;rio e poder&#227;o ser compartilhados com o sistema Computacional Inteligente de Assist&#234;ncia Domiciliar &#224; Sa&#250;de (SCIADS)<sup>14</sup>, possibilitando assim o monitoramento remoto das condi&#231;&#245;es de sa&#250;de dos pacientes e ajudando a dar suporte para a tomada de decis&#245;es do m&#233;dico caso for necess&#225;rio.</p>
    <p>Finalmente, vale ressaltar que o projeto de "Minha Sa&#250;de" foi aprovado pelo Comit&#234; de &#201;tica em Pesquisa da Universidade Federal Fluminense com o Parecer Consubstanciado N&#186; 126.219. Seu objetivo principal &#233; avaliar o impacto da Rede Social na sa&#250;de, no comportamento e na qualidade de vida de pacientes com Insufici&#234;ncia Card&#237;aca do Hospital Universit&#225;rio Antonio Pedro.</p>
  </body>
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  <sub-article article-type="translation" id="TRen" xml:lang="en">
    <front-stub>
      <article-categories>
        <subj-group subj-group-type="heading">
          <subject>Clinical Update</subject>
        </subj-group>
      </article-categories>
      <title-group>
        <article-title xml:lang="en">Health social networks as online life support groups for patients with cardiovascular diseases</article-title>
      </title-group>
      <abstract xml:lang="en">
        <p>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.</p>
      </abstract>
      <kwd-group xml:lang="en">
        <kwd>Cardiovascular Diseases</kwd>
        <kwd>Social Network</kwd>
        <kwd>Discussion Forums</kwd>
        <kwd>Information Services</kwd>
        <kwd>Information Exchange</kwd>
      </kwd-group>
    </front-stub>
    <body>
      <p>
        <bold>CLINICAL UPDATE</bold>
      </p>
      <p>
        <fn id="enda-body2">
          <label>
            <bold>Health social networks as online life support groups for patients with cardiovascular diseases</bold>
          </label>
          <p>
            <bold>Edhelmira Lima Medina<sup>I</sup>; Orlando Loques Filho<sup>I</sup>; Cl&#225;udio Tinoco Mesquita<sup>II</sup></bold>
          </p>
        </fn>
      </p>
      <p><sup>I</sup>Instituto de Computa&#231;&#227;o - Universidade Federal Fluminense</p>
      <p><sup>II</sup>Hospital Universit&#225;rio Ant&#244;nio Pedro - Universidade Federal Fluminense, Niter&#243;i, RJ - Brasil</p>
      <p>Mailing Address</p>
      <p>
        <bold>ABSTRACT</bold>
      </p>
      <p>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.</p>
      <p> 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.</p>
      <p> 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.</p>
      <p><bold>Keywords:</bold> Cardiovascular Diseases; Social Network; Discussion Forums; Information Services; Information Exchange.</p>
      <p>
        <bold>Introduction</bold>
      </p>
      <p>Every year, two million new individuals are diagnosed with cardiovascular disease worldwide<sup>1</sup>. 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<sup>2</sup> are virtual environments where online support groups constitute an alternative aimed at creating relationships between patients with similar interests (Figure 1).</p>
      <p>According to the International Telecommunication Union (ITU)<fn id="fn1b-body2"><label><sup>1</sup></label><p>, 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 </p><p><italic>comScore</italic></p></fn><fn id="fn2b-body2"><label><sup>2</sup></label><p>. 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</p><p><sup>3-5</sup> 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.</p></fn></p>
      <p>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.</p>
      <p>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.</p>
      <p>
        <bold>Methods</bold>
      </p>
      <p>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; Association for Computing Machinery(ACM)<fn id="fn3b-body2"><label><sup>3</sup></label><p>; and Institute of Electrical and Electronics Engineers (IEEE)</p></fn><fn id="fn4b-body2"><label><sup>4</sup></label><p>. 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.</p></fn></p>
      <p>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.</p>
      <p>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.</p>
      <p>
        <bold>Results</bold>
      </p>
      <p>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.</p>
      <p>
        <bold>HeartNet website</bold>
      </p>
      <p>A pioneer study on the impact of online communities for people with heart conditions was conducted in 2007 by Bonniface et al<sup>6</sup>. 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.</p>
      <p>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:</p>
      <p><italic>Mutual support</italic>: characterizes the interaction of receiving and exchanging information between patientsand 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<sup>6</sup>.</p>
      <p>
        <italic>"...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."</italic>
      </p>
      <p><italic>Support seeking as self-help</italic>: 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:</p>
      <p>
        <italic>"... 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."</italic>
      </p>
      <p><italic>Support giving as stored currency or debt paying</italic>: 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 <italic>diseases)</italic>. 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:</p>
      <p>
        <italic>"... 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."</italic>
      </p>
      <p><italic>Moderating information</italic>: 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.</p>
      <p><italic>The dilemma of sharing</italic>: 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:</p>
      <p>
        <italic>"... 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..."</italic>
      </p>
      <p>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.</p>
      <p>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'.</p>
      <p><italic>Support as bad debt</italic>: 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.</p>
      <p>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 "<italic>The Gift Economy</italic>" 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.</p>
      <p>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<sup>7</sup> by the same author in 2006, half of them being recognized as therapeutic and beneficial to the patients' quality of life.</p>
      <p>
        <bold>Moderated and unmoderated support group</bold>
      </p>
      <p>In 2009, Lindsay et al<sup>8</sup> 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.</p>
      <p>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.</p>
      <p>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.</p>
      <p>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.</p>
      <p>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 groupwith a moderator.</p>
      <p>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.</p>
      <p>
        <bold>Peripartum Cardiomyopathy Group I</bold>
      </p>
      <p>In 2010, Hess et al<sup>9</sup> 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.</p>
      <p>The survey sent was an adaptation from the dissertation of Agnew LS, 2001 (title: "Caracter&#237;sticas e benef&#237;cios de Grupos de Suporte Online para pacientes com C&#226;ncer"). 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. </p>
      <p>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.</p>
      <p>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.</p>
      <p>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.</p>
      <p>
        <bold>Peripartum Cardiomyopathy Group II</bold>
      </p>
      <p>In 2012, Hess et al<sup>10</sup> conducted another study with 156 patients with PPCM, who generated 247 posts in the PPCM group created in <italic>MySpace</italic>. The objective was to identify in the content posted the following Neuman Systems Model variables: physiological, psychological, sociocultural and spiritual aspects; and personal development.</p>
      <p> 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.</p>
      <p>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.</p>
      <p>
        <bold>Discussion</bold>
      </p>
      <p>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.</p>
      <p>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<sup>11-13</sup>; 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.</p>
      <p>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<sup>13</sup> 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.</p>
      <p>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.</p>
      <p>
        <bold>Conclusions</bold>
      </p>
      <p>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.</p>
      <p>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.</p>
      <p>
        <bold>Acknowledgements</bold>
      </p>
      <p>The authors thank CAPES and FAPERJ for partially financing this study.</p>
      <p>
        <bold>Author contributions</bold>
      </p>
      <p>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.</p>
      <p>
        <bold>Potential Conflict of Interest</bold>
      </p>
      <p>No potential conflict of interest relevant to this article was reported.</p>
      <p>
        <bold>Sources of Funding</bold>
      </p>
      <p>This study was partially funded by Funda&#231;&#227;o Carlos Chagas Filho de Amparo &#224; Pesquisa do estado do Rio de Janeiro.</p>
      <p>
        <bold>Study Association</bold>
      </p>
      <p>This article is part of the thesis of master submitted by Edhelmira Lima Medina from Universidade Federal Fluminense.</p>
      <p>
        <bold>References</bold>
      </p>
    </body>
  </sub-article>
</article>
