Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more often provided at home. We explored the impact of living with a chronic disease, the life situation as well as using Advoy, a new web-based patient diary with messaging function. Twelve adults from Sweden wrote an essay each about their disease and how it is to be an Advoy user. The text was analyzed with directed qualitative content analysis. The respondents stated that they were living on a border; hence their lives were much better after starting their home therapy. Using Advoy made them feel more confident, since the overview and history of their treatment gave them information and understanding about their problems. It was hard to navigate on the Advoy site, and this made some of the respondents frustrated, so they used it only for plain treatment documentation. Improvements are needed in Advoy, in order to enhance self care activities.@en
Array ( [dateOfAvailability] => Array ( [pt] => Array ( [0] => Array ( [2010-06-30] => 128214 ) ) ) [hasAuthor] => Array ( [nn] => Array ( [0] => Array ( [Janne Björkander] => 128215 ) [1] => Array ( [Carina M. Berterö] => 128216 ) ) ) [hasFileStorage] => Array ( [nn] => Array ( [0] => Array ( [_repository/127865/2020/01/oai_ojs_reciis_icict_fiocruz_br_article_675#00086.pdf] => 134449 ) ) ) [hasSubject] => Array ( [en] => Array ( [0] => Array ( [Primary immunodeficiency diseases] => 128205 ) [1] => Array ( [Home therapy] => 128206 ) [2] => Array ( [Life situation] => 128207 ) [3] => Array ( [Advoy] => 128208 ) [4] => Array ( [Qualitative] => 128209 ) [5] => Array ( [Content analysis] => 273047 ) [6] => Array ( [Content analysis] => 7047 ) ) [pt] => Array ( [0] => Array ( [Transtorno de imunodeficiência primária] => 128210 ) [1] => Array ( [Terapia domiciliar] => 128211 ) [2] => Array ( [Condição de vida] => 128212 ) [3] => Array ( [Análise de conteúdo qualitativa] => 128213 ) ) ) [isPartOfSource] => Array ( [pt] => Array ( [0] => Array ( [Revista Eletrônica de Comunicação, Informação e Inovação em Saúde] => 127865 ) ) ) [hasIssueOf] => Array ( [pt] => Array ( [0] => Array ( [ISSUE:JNL:00086-2010-4-2] => 128203 ) ) ) [hasAbstract] => Array ( [en] => Array ( [0] => Array ( [Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more often provided at home. We explored the impact of living with a chronic disease, the life situation as well as using Advoy, a new web-based patient diary with messaging function. Twelve adults from Sweden wrote an essay each about their disease and how it is to be an Advoy user. The text was analyzed with directed qualitative content analysis. The respondents stated that they were living on a border; hence their lives were much better after starting their home therapy. Using Advoy made them feel more confident, since the overview and history of their treatment gave them information and understanding about their problems. It was hard to navigate on the Advoy site, and this made some of the respondents frustrated, so they used it only for plain treatment documentation. Improvements are needed in Advoy, in order to enhance self care activities.] => 0 ) ) [pt] => Array ( [0] => Array ( [A terapia vitalícia com imunoglobulina para pacientes portadores de transtorno de imunodeficiência primária é, freqüentemente, realizada em casa. Investigamos o impacto de viver com uma doença crônica, as condições vida e também a utilização de Advoy, um diário do paciente com base na rede mundial de computadores, com funções de envio de mensagem. Doze suecos adultos escreveram, cada um, um ensaio sobre sua doença e sobre como se sentiam sendo usuários de Advoy. O texto foi examinado utilizando análise de conteúdo qualitativa direcionada. Os entrevistados declararam que estavam vivendo no limite; portanto, suas vidas melhoraram muito depois que iniciaram a terapia domiciliar. O uso de Advoy proporcionou-lhes muito mais confiança, pois a visão geral e o histórico de seus tratamentos forneceram informação e entendimento sobre seus problemas. Foi difícil navegar no site de Advoy, o que frustrou alguns dos entrevistados; eles o utilizaram, então, para simplesmente documentar o tratamento. Advoy precisa sofrer alterações para melhorar as atividades com os cuidados pessoais.] => 0 ) ) ) [hasID] => Array ( [nn] => Array ( [0] => Array ( [oai:ojs.reciis.icict.fiocruz.br:article/675] => 0 ) ) ) [hasRegisterId] => Array ( [pt] => Array ( [0] => Array ( [https://www.reciis.icict.fiocruz.br/index.php/reciis/article/view/675] => 0 ) [1] => Array ( [10.3395/reciis.v4i2.675] => 0 ) ) ) [hasSource] => Array ( [pt] => Array ( [0] => Array ( [Revista Eletrônica de Comunicação, Informação e Inovação em Saúde; v. 4, n. 2 (2010)] => 0 ) ) [nn] => Array ( [0] => Array ( [1981-6278] => 0 ) ) ) [hasTitle] => Array ( [en] => Array ( [0] => Array ( [Does Advoy.com⢠help patients with primary immunodeficiency diseases experience that their life situation has improved?] => 0 ) ) [pt] => Array ( [0] => Array ( [Advoy.com™ ajuda a melhorar a qualidade de vida dos pacientes portadores de transtornos de imunodeficiência primária?] => 0 ) ) ) [hasUrl] => Array ( [pt] => Array ( [0] => Array ( [https://www.reciis.icict.fiocruz.br/index.php/reciis/article/view/675/1323] => 0 ) [1] => Array ( [https://www.reciis.icict.fiocruz.br/index.php/reciis/article/view/675/1791] => 0 ) ) ) [prefLabel] => Array ( [pt] => Array ( [0] => Array ( [Oai:ojs.reciis.icict.fiocruz.br:article/675#00086] => 0 ) ) ) )
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