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      Internet como fuente de datos en investigación cualitativa en ciencias de la salud. Comunidades virtuales de pacientes Translated title: Internet as a data source in qualitative research in health sciences. Virtual Patient Communities

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          Abstract

          Resumen Las comunidades virtuales de pacientes en Internet son una fuente de datos potencial para investigaciones cualitativas, permitiendo explorar la perspectiva y vivencia de los pacientes sobre sus problemas de salud. En este artículo analizamos las posibilidades de utilización de estas comunidades virtuales y aportamos una propuesta metodológica. Se parte de una revisión bibliográfica y se realiza una adaptación práctica de la metodología cualitativa siguiendo el esquema: pregunta de investigación-objetivos-hipótesis-muestreo-análisis de hilos de conversación. Se aplican principios de netnografía y ciberhabla. La base de muestreo son lugares web de comunidades virtuales de pacientes, seleccionadas según enfermedad, objetivos y calidad, estableciendo límites temporales. Contenido del análisis de los hilos: tema, número de participantes, secuencias conversacionales, protagonistas, reglas y clima. Se realiza un informe provisional, definitivo tras la devolución a la comunidad virtual para aportaciones. El ciclo se reinicia si no se responden las preguntas de investigación.

          Translated abstract

          Abstract Virtual Patient Communities are a potential data source for qualitative research, allowing to explore the patient perspective and experience about their chronic diseases. In this article we analyse the possibilities of using these virtual patient communities, and we provide a methodological proposal. It starts from a bibliographic review and a practical adaptation to the qualitative methodology is carried out following the scheme: research question-objectives-hypothesis-sampling-analysis of conversation threads. Principles of netnography and netspeak are applied. The sampling frame is websites of virtual patient communities that are selected according to disease, objectives, quality and time limits. Content of the analysis of the threads: theme, number of participants, conversational sequences, protagonists, rules and climate. A provisional report is made, and the definitive report will be make after the return to virtual patient community for their contributions. The cycle restarts if the research questions are not answered.

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          The importance of being expert: the quest for cancer information on the Internet.

          To people with the necessary technology the internet can provide vast amounts of health information. However, there are concerns about the quality of the information and how it may affect relationships between patients and doctors. Little empirical research has examined how the internet is used by those diagnosed with a serious illness. This study uses in-depth interviews collected for DIPEx projects with men and women with cancer. The analysis is informed by Radley and Billig's (Sociol. Health Illness 2 (1996) 220) observation that accounts of illness require patients to simultaneously display themselves as 'worthy individuals, as more or less fit participants in the social world' and on Arthur Frank's work on quest narratives. Drawing on in-depth interviews with a woman with inflammatory breast cancer and a man with prostate cancer I will demonstrate how the internet has been used not only to gather information and gain support from others but also to make sense of the experience of cancer. The ability to access health information on the internet may provide patients with an opportunity to display a particularly modern marker of competence and social fitness. However, one of the consequences of easier access to health information may be the emergence of a felt imperative to be (or present oneself as) an expert and critical patient, able to question advice and locate effective treatments for oneself.
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            The effects of Internet or interactive computer-based patient education in the field of breast cancer: a systematic literature review.

            The aim of this systematic review was to analyze what kind of Internet or interactive computer-based patient education programs have been developed and to analyze the effectiveness of these programs in the field of breast cancer patient education. Patient education for breast cancer patients is an important intervention to empower the patient. However, we know very little about the effects and potential of Internet-based patient education in the empowerment of breast cancer patients. Complete databases were searched covering the period from the beginning of each database to November 2008. Studies were included if they concerned patient education for breast cancer patients with Internet or interactive computer programs and were based on randomized controlled, on clinical trials or quasi-experimental studies. We identified 14 articles involving 2374 participants. The design was randomized controlled trial in nine papers, in two papers clinical trial and in three quasi-experimental. Seven of the studies were randomized to experimental and control groups, in two papers participants were grouped by ethnic and racial differences and by mode of Internet use and three studies measured the same group pre- and post-tests after using a computer program. The interventions used were described as interactive computer or multimedia programs and use of the Internet. The methodological solutions of the studies varied. The effects of the studies were diverse except for knowledge-related issues. Internet or interactive computer-based patient education programs in the care of breast cancer patients may have positive effect increasing breast cancer knowledge. The results suggest a positive relationship between the Internet or computer-based patient education program use and the knowledge level of patients with breast cancer but a diverse relationship between patient's participation and other outcome measures. There is need to develop and research more Internet-based patient education. 2009 Elsevier Ireland Ltd. All rights reserved.
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              Internet use leads cancer patients to be active health care consumers.

              This study examines whether cancer patients' Internet use leads them to prefer a more active role in medical decision making and whether the effects of Internet use on active participation preferences vary according to patients' education levels. Randomly drawn sample (N=2013) from the Pennsylvania Cancer Registry, comprised of breast, prostate, and colon cancer patients, completed mail surveys in the fall of 2006 (overall response rate=64%). Of 2013 baseline respondents, 85% agreed to participate in follow-up survey (N=1703). Of those who agreed, 76% (N=1293) completed follow-up surveys in the fall of 2007. Cancer patients' Internet use for health information at wave one led them to want to be more active participants in medical decision making at wave two (β=.06, p<.05). This applied to all cancer patients regardless of their education levels. Higher levels of Internet use among cancer patients may lead patients to want to be more actively involved in medical decision making. Considering the beneficial effects of patients' active participation in medical decision making, it will be worthwhile for health educators to recommend Internet use to cancer patients. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.
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                Author and article information

                Journal
                index
                Index de Enfermería
                Index Enferm
                Fundación Index (Granada, Granada, Spain )
                1132-1296
                1699-5988
                March 2023
                : 32
                : 1
                : e13168
                Affiliations
                [1] Granada orgnameHospital Universitario Virgen de las Nieves España
                [2] Málaga orgnameDistrito Sanitario Málaga orgdiv1Centro de Salud el Palo España
                [3] Málaga Andalucía orgnameUniversidad de Málaga orgdiv1Departamento de Farmacología y Pediatría Spain
                Article
                S1132-12962023000100012 S1132-1296(23)03200100012
                10.58807/indexenferm20234361
                d554411d-e860-48b5-8783-6cb8c5938139

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                History
                : 10 December 2020
                : 08 February 2021
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 24, Pages: 0
                Product

                SciELO Spain

                Categories
                Metodología Cualitativa

                Internet,Investigación Cualitativa,Enfermedad Crónica,Qualitative Research,Chronic Disease

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