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Stefania Vicari - Digital Media and Participatory Cultures of Health and Illness

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Book:
Digital Media and Participatory Cultures of Health and Illness
Author:
Stefania Vicari
Publisher:
Routledge
Genre:
Books / Politics
Year:
2021
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Digital Media and Participatory Cultures of Health and Illness

This book explores how the complex scenario of platforms, practices and content in the contemporary digital landscape is shaping participatory cultures of health and illness.

The everyday use of digital and social media platforms has major implications for the production, seeking and sharing of health information, and raises important questions about health peer support, power relations, trust, privacy and knowledge. To address these questions, this book navigates contemporary forms of participation that develop through mundane digital practices, like tweeting about the latest pandemic news or keeping track of our daily runs with Fitbit or Strava. In doing so, it explores both radical activist practices and more ordinary forms of participation that can gradually lead to social and/or cultural changes in how we understand and experience health and illness. While drawing upon digital media studies and the sociology of health and illness, this book offers theoretical and methodological insights from a decade of empirical research of health-related digital practices that span from digital health advocacy to illness-focused social media uses.

Accessible and engaging, this book is ideal for scholars and students interested in digital media, digital activism, health advocacy and digital health.

Stefania Vicari is Senior Lecturer in Digital Sociology at the University of Sheffield, UK. Her research interests include the general areas of digital participation, digital health and digital methods. Her works have appeared in a number of journals including Information, Communication and Society; Media, Culture and Society; New Media and Society; Social Media + Society; Social Movement Studies and Current Sociology.

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Digital Media and Participatory Cultures of Health and Illness

Stefania Vicari

For more information about this series, please visit: https://www.routledge.com/Routledge-Studies-in-New-Media-and-Cyberculture/book-series/RSINC

First published 2022

by Routledge

605 Third Avenue, New York, NY 10158

and by Routledge

2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN

Routledge is an imprint of the Taylor & Francis Group, an Informa business

2022 Taylor & Francis

The right of Stefania Vicari to be identified as author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.

Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.

Library of Congress Cataloging-in-Publication Data

Names: Vicaria, Stefania, author.

Title: Digital media and participatory cultures of health and illness /

Stefania Vicaria.

Description: New York, NY : Routledge, [2022] | Series: Routledge

studies in new media and cyberculture | Includes bibliographical

references and index.

Subjects: LCSH: Health promotionTechnological innovations. |

Digital media.

Classification: LCC RA427.8 .V53 2022 (print) | LCC RA427.8

(ebook) | DDC 362.10285dc23/eng/20211013

LC record available at https://lccn.loc.gov/2021033716

LC ebook record available at https://lccn.loc.gov/2021033717

ISBN: 978-1-138-60312-7 (hbk)

ISBN: 978-1-032-16958-3 (pbk)

ISBN: 978-0-429-46914-5 (ebk)

DOI: 10.4324/9780429469145

Typeset in Times New Roman

by Apex CoVantage, LLC

Contents

PART 1: Theoretical Foundations

2 Digital Media, Participation and Citizenship

3 Health Advocacy and Activism

PART 2: Digitised and Networked Health

4 The Rise of the Epatient in the Internet That Was

5 From Patient Organisations to Patient Networks

PART 3: Platforms

6 Participatory Cultures of Health and Illness on Mainstream Social Media

7 Participatory Cultures of Health and Illness on Digital Health Platforms

8 Conclusion: Understanding Participatory Cultures of Health and Illness in Contemporary Societies

Part 1: Theoretical Foundations
1. 2 Digital Media, Participation and Citizenship
2. 3 Health Advocacy and Activism
Part 2: Digitised and Networked Health
1. 4 The Rise of the Epatient in the Internet That Was
2. 5 From Patient Organisations to Patient Networks
Part 3: Platforms
1. 6 Participatory Cultures of Health and Illness on Mainstream Social Media
2. 7 Participatory Cultures of Health and Illness on Digital Health Platforms
3. 8 Conclusion: Understanding Participatory Cultures of Health and Illness in Contemporary Societies

Guide

Figures and Tables

Figures

4.1 Telemedicine, eHealth and mHealth on PubMed 1980-present.

5.1 Digital Mechanisms on the websites of rare disease patient organisations.

6.1 Storytelling tweet (1) (anonymised and paraphrased).

6.2 Storytelling tweet (2).

6.3 Storytelling tweet (3).

6.4 Storytelling tweet (4) (anonymised and paraphrased).

6.5 Storytelling tweet (5).

6.6 Storytelling tweet (6) (anonymised and paraphrased).

6.7 Non-storytelling tweet (1).

6.8 Non-storytelling tweet (2).

6.9 Button sharing generating the pre-modified version of the tweet of Figure 6.8.

6.10 Non-storytelling tweet (3) (anonymised and paraphrased).

6.11 Issue publics, communities of practice and epistemic communities on social media.

6.12 Sources of information in storytelling and non-storytelling tweets.

6.13 National Hereditary Breast Cancer Helpline announcing the passing of Louise Mallendar on Facebook.

Tables

5.1 Rare disease and patients advocacy organisations.

5.2 The identity of rare disease patients advocacy organisations.

5.3 The areas of action of rare disease patients advocacy organisations.

5.4 A typology of rare disease patients advocacy organisations.

5.5 Top linked to websites.

6.1 Top broadcasters of BRCA content in the 2013 sample period.

6.2 Top gatekeepers of BRCA content in the 2013 sample period.

6.3 Top broadcasters of BRCA content in the 2015 sample period.

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