Information work and social support in a digitally embodied patient movement.

    The project studies how people with diagnosed endometriosis use digital communication technologies to find, exchange and evaluate information about the disease and how to cope with, and find support for, their condition. The role and function of digital media for knowledge acquisition, knowledge production and social support are thus in focus in the various sub-studies.


    The analysis of information work and peer support is in turn broken down into four distinct research questions:

    1. How is authoritative knowledge gathered, negotiated and challenged?
      What are the collective processes for filtering, interpreting, evaluating, and synthesising information from different sources (e.g. experiential vs. professional)?
    2. How does the endometriosis community make use of the collectively created knowledge to enhance its legitimacy and, possibly, challenge other claims-makers?
    3. In what ways, and under what conditions, can the information work processes enable or hinder collective coping strategies, and what are those strategies?
    4. What types of networks are formed through postings and discussions within the online endometriosis patient movement? Are they tightly or loosely knit? Does participation persist over time? What is the relationship between giving and receiving peer support?

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    Endo Stories

    One of the sub-studies focus on women's own experiences of living with endometriosis and the motives and experiences they have of using internet and social media to seek knowledge as well as give and receive support online. Data is collected through semi-structured interviews and/or written stories (i.e. "endo stories"). These stories, solicited from active users, will highlight the role of digital communication for information, support and coping.

    The interviews and written stories focus on:

    • Capturing motives for sharing and exchanging experiences, knowledge and support.
    • Getting a deeper understanding of how different online information and sources are evaluated, negotiated and used.
    • Exploring in what ways these self-organised forms of interaction contribute to collective support and coping strategies.

    This is a three year research project funded by the Stiftelsen Marcus och Amalia Wallenbergs Minnesfond, with the University of Umeå, Sweden.


    Principle Investigator: Professor Simon Lindgren is Professor of Sociology at Umeå University in Sweden. He is also the director of DIGSUM, an interdisciplinary academic research centre studying the social dimensions of digital technology, and the editor-in-chief of the Journal of Digital Social Research. His research is about the relationship between digital technologies and society. He is especially interested in the study of the transformative role of digital communication technologies (internet and social media), and the consequences of datafication and algorithms, with a particular focus on politics and power relations. 

    Co-Investigator: Dr Lorna-Jane Richardson is Lecturer in Digital Humanities in the Interdisciplinary Institute for the Humanities at UEA. Her main research interests are in the fields of digital public archaeology and digital research methods, especially in social media. She is a core staff member in the Digital Humanities Incubator Group. She is interested in the interface between digital communications, social media, and concepts of elitism and academic/professional expertise. Her work explores how digital media can support, exclude and contain alternative ideas and lived experience

    Co-Investigator: Professor Carita Bengs, PhD, is Professor in Sociology in the Department of Food Nutrition and Culinary Science at Umeå University, Sweden. She is also a registered nurse (RN). Her main areas of research lie within the fields of medical sociology, sociology of the body, gender, youth, media, emotions and embodiment. Her previous work has focused on gendered experiences of the body, stress, depression and musculoskeletal disorders (MSDs). She is currently involved in the research project EndoSisters – Information work and peer support in a digitally embodied patient movement, where she conducts interviews with women, active in online settings, on the role and function of digital communication and how they use internet and social media to cope with their condition.


    Interdisciplinary Institute for the Humanities

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