Turning to Peers: Integrating Understanding of the Self, the Condition, and Others’ Experiences in Making Sense of Complex Chronic Conditions

Aisling Ann O’kane, Sun Young Park, Helena Mentis, Ann Blandford, Yunan Chen

Research output: Contribution to journalArticle (Academic Journal)peer-review

44 Citations (Scopus)
293 Downloads (Pure)

Abstract

People are increasingly involved in the self-management of their own health, including chronic conditions. With technology advances, the choice of self-management practices, tools, and technologies has never been greater. The studies reported here investigated the information seeking practices of two different chronic health populations in their quest to manage their health conditions. Migraine and diabetes patients and clinicians in the UK and the US were interviewed about their information needs and practices, and representative online communities were explored to inform a qualitative study. We found that people with either chronic condition require personally relevant information and use a broad and varied set of practices and tools to make sense of their specific symptoms, triggers, and treatments. Participants sought out different types of information from varied sources about themselves, their medical condition, and their peers’ experiences of the same chronic condition. People with diabetes and migraine expended great effort to validate their personal experiences of their condition and determine whether these experiences were ‘normal’. Based on these findings, we discuss the need for future personal health technologies that support people in engaging in meaningful and personalised data collection, information seeking, and information sharing with peers in flexible ways that enable them to better understand their own condition.
Original languageEnglish
Pages (from-to)477-501
JournalComputer Supported Cooperative Work
Volume25
Issue number6
Early online date17 Aug 2016
DOIs
Publication statusPublished - 1 Dec 2016

Research Groups and Themes

  • Digital Health
  • Bristol Interaction Group

Keywords

  • Digital Health

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