Motives for sharing illness experiences on Twitter: conversations of parents with children diagnosed with cancer

ABSTRACT

A patient- and family-centred approach in paediatric health care is important because parents are involved in making key decisions about their child’s health care and advocating for the best interest of the child. Parents and family members are increasingly turning to the internet to find and actively share information about their child’s health care. Twitter is one of many online platforms used by parents of children diagnosed with cancer to share information related to their child’s cancer experience. Existing research suggests that there is a need to better understand the motives for using Twitter for sharing content about a child’s cancer experience. Furthermore, there is a lack of theoretical frameworks for characterizing those motives. In this paper, we identify key themes of tweets posted by parents of children diagnosed with cancer and align those themes with motives inspired by the well-studied Everyday Life Information Seeking framework. We propose a new motive in addition to those associated with the framework and suggest that information can be shared for endogenous reasons as well as to meet the needs of others. This paper contributes an increased understanding of motives for sharing information about a child’s cancer journey and extends a theoretical framework for building further knowledge in this area.

KEYWORDS:

• Twitter
• childhood cancer
• illness narratives
• social media
• Everyday Life Information Seeking

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributor

Sameen Rehman is an alumni of the University of Toronto Master of Information Program, graduating in 2014. Her major area of research was focused on using social media (specifically Twitter) as a means for sharing illness experiences within the childhood cancer community. She is currently working as a Business Intelligence professional in the pharmaceutical industry [email: [email protected]].

Kelly Lyons is an Associate Professor in the Faculty of Information at the University of Toronto. Prior to joining the Faculty of Information, she was the Program Director of the IBM Toronto Lab Centre for Advanced Studies (CAS). Her current research interests include service science, social media and collaborative work. Currently, she is focusing on ways in which social media can support human-to-human interactions in service systems. Kelly has co-authored a number of papers, served on program committees for conferences, given many keynote and invited presentations, and co-chaired several workshops. She has been the recipient of an NSERC Discovery Grant, an NSERC Collaborative Research and Development Grant with SAP, and an IBM Smarter Planet Faculty Innovation Grant, has received funding through the GRAND Networks of Centres of Excellence (NCE) and has been the recipient of two NSERC Engage Grants (one with Sciencescape and one with Dell). Kelly holds a cross-appointment with the University of Toronto’s Department of Computer Science, is a member of the Executive Committee of the University of Toronto’s Knowledge Media Design Institute, and is an IBM Faculty Fellow. From 2008 to 2012, she was a Member-at-Large of the ACM Council and a member of the Executive Council of ACM-W. Kelly is very interested in promoting Women in Technology initiatives and has given several presentations to young people and teachers on this topic [email: [email protected]].

Rhonda McEwen is an associate professor at the Institute of Communication, Culture, Information and Technology and at the iSchool, at the University of Toronto. She holds an MBA in IT from City University in London, England, an MSc in Telecommunications from the University of Colorado, and a Ph.D. in Information from University of Toronto. Dr McEwen has worked and researched digital communication media for 15 years, both in companies providing services and in management consulting to those companies. Her research and teaching centre around information practices involving new media technologies – with an emphasis on mobile and tablet communication, new media, social networks, and sensory information processing. CBS 60 Minutes journalists covered McEwen’s research in 2012 and 2013, and she has recent publications in Information, Communication & Society, Computers and Education, Learning & Instruction, New Media and Society, and Library and Information Science Research journals [email: [email protected]].

Kate Sellen has a Master’s degree in Information Design from Georgia Institute of Technology, a Bachelor’s of Science and Master of Research from University College London, and a Ph.D. in Human Factors in Industrial Engineering from University of Toronto. Her research broadly addresses design thinking and human factors for challenges in health care with a focus on resilience and creativity in innovation for safety critical and distributed health care. Her research aligns with healthcare system goals of enhancing the efficient delivery of health care, preventing iatrogenic events, and assisting patients and home caregivers to effectively manage home care. Addressing these goals necessitates a human-centred approach to design and research, sensitivity to health care as a system, knowledge of emerging and current technology trends, and attention to potential barriers and facilitators to leading innovation and change. Kate leads the teaching of human centred approaches for OCADU’s Strategic Foresight and Innovation program (SFI OCADU), and coaches student teams for the Hult Prize and Rotman Design Challenge [email: [email protected]].

ORCID

Kelly Lyons http://orcid.org/0000-0001-6866-7301