Skip to main content
SpringerLink
Log in

Pain and the Internet: Transforming the Experience?

  • Chapter
  • First Online:
Painscapes

Abstract

The Internet is changing the way that people are experiencing illness and is increasingly the first port of call for information as well as support and practical advice for self-management, reassurance, encouragement, to compare experiences of treatment, and to offer advice and support to others. This chapter considers how people experiencing pain use the Internet to express, share, and learn from others’ experiences.

We draw on a conceptual review of the potential health effects of accessing other people’s experiences online (Ziebland and Wyke 2012). Using examples from an Oxford University archive of qualitative interview studies, we draw on the value of first person accounts, and the appeal of stories, to explore the need of people to make contact with peers and hear their accounts of pain and illness. Participating in the creation of health information, we argue, influences the way people cope with pain, and has implications for understanding the role of self-care management.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 54.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 54.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    Ziebland, Sue, and Sally Wyke. “Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People’s Health?” The Milbank Quarterly 90, no. 2 (2012): 219–249.

  2. 2.

    Dow, Clare M., Patricia A. Roche, and Sue Ziebland. “Talk of Frustration in the Narratives of People with Chronic Pain”. Chronic illness 8, no. 3 (2012): 176–191.

  3. 3.

    Entwistle, Vikki Ann, Emma F. France, Sally Wyke, Ruth Jepson, Kate Hunt, Sue Ziebland, and Andrew Thompson. “How Information About Other People’s Personal Experiences Can Help with Healthcare Decision-Making: A Qualitative Study”. Patient Education and Counseling 85, no. 3 (2011): e291–e298.

  4. 4.

    Hart, Angie, Flis Henwood, and Sally Wyatt. “The Role of the Internet in Patient–Practitioner Relationships: Findings from a Qualitative Research Study”. Journal of Medical Internet Research 6, no. 3 (2004): e36.

  5. 5.

    Bury, Michael. “Chronic Illness as Biographical Disruption”. Sociology of Health & Illness 4, no. 2 (1982): 167–182.

  6. 6.

    Giddens, Anthony. “Agency, Structure”. In Central Problems in Social Theory (Macmillan Education UK, 1979), 49–95.

  7. 7.

    Mazanderani, Fadhila, Louise Locock, and John Powell. “Being Differently the Same: The Mediation of Identity Tensions in the Sharing of Illness Experiences”. Social Science & Medicine 74, no. 4 (2012): 546–553.

  8. 8.

    van Uden-Kraan, Cornelia F., Constance H. C. Drossaert, Erik Taal, Bret R. Shaw, Erwin R. Seydel, and Mart A. F. J. van de Laar. “Empowering Processes and Outcomes of Participation in Online Support Groups for Patients with Breast Cancer, Arthritis, or Fibromyalgia”. Qualitative Health Research 18, no. 3 (2008): 405–417.

  9. 9.

    Lin, Tung-Ching, Jack Shih-Chieh Hsu, Hsiang-Lan Cheng, and Chao-Min Chiu. “Exploring the Relationship Between Receiving and Offering Online Social Support: A Dual Social Support Model”. Information & Management 52, no. 3 (2015): 371–383.

  10. 10.

    Dennis, Cindy-Lee. “Peer Support Within a Health Care Context: A Concept Analysis”. International Journal of Nursing Studies 40, no. 3 (2003): 321–332.

  11. 11.

    Negroponte, N. “Being Digital. New York, Alfred A. Kopf” (1995).

  12. 12.

    Salzer, Mark S., Steven C. Palmer, Katy Kaplan, Eugene Brusilovskiy, Thomas Ten Have, Maggie Hampshire, James Metz, and James C. Coyne. “A Randomized, Controlled Study of Internet Peer-to-Peer Interactions Among Women Newly Diagnosed with Breast Cancer”. Psycho-Oncology 19, no. 4 (2010): 441–446.

  13. 13.

    Bruce, Bonnie, Kate Lorig, Diana Laurent, and Philip Ritter. “The Impact of a Moderated E-mail Discussion Group on Use of Complementary and Alternative Therapies in Subjects with Recurrent Back Pain”. Patient Education and Counseling 58, no. 3 (2005): 305–311.

  14. 14.

    Ruiz, Irene Solera, Guadalupe Poblaciòn García, and Irene Riquelme. “E-mail Communication in Pain Practice: The Importance of Being Earnest”. Saudi Journal of Anaesthesia 8, no. 3 (2014): 364.

  15. 15.

    Kroenke, Kurt, Erin E. Krebs, Jingwei Wu, Zhangsheng Yu, Neale R. Chumbler, and Matthew J. Bair. “Telecare Collaborative Management of Chronic Pain in Primary Care: A Randomized Clinical Trial”. JAMA 312, no. 3 (2014): 240–248.

  16. 16.

    Briones-Vozmediano, Erica, Carmen Vives-Cases, Elena Ronda-Pérez, and Diana Gil-González. “Patients’ and Professionals’ Views on Managing Fibromyalgia”. Pain Research and Management 18, no. 1 (2013): 19–24.

  17. 17.

    White, Ryen W., and Eric Horvitz. “Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search”. ACM Transactions on Information Systems (TOIS) 27, no. 4 (2009): 23.

  18. 18.

    Starcevic, Vladan, and Elias Aboujaoude. “Cyberchondria, Cyberbullying, Cybersuicide, Cybersex: ‘New’ Psychopathologies for the 21st Century?” World Psychiatry 14, no. 1 (2015): 97–100.

  19. 19.

    Anderson, James G., Michelle R. Rainey, and Gunther Eysenbach. “The Impact of CyberHealthcare on the Physician–Patient Relationship”. Journal of Medical Systems 27, no. 1 (2003): 67–84.

  20. 20.

    McMullan, Miriam. “Patients Using the Internet to Obtain Health Information: How This Affects the Patient–Health Professional Relationship”. Patient Education and Counseling 63, no. 1 (2006): 24–28.

  21. 21.

    Atherton, Helen, and Azeem Majeed. “Social Networking and Health”. The Lancet 377, no. 9783 (2011): 2083.

  22. 22.

    Greenhalgh, Trisha. “Chronic Illness: Beyond the Expert Patient”. BMJ: British Medical Journal 338, no. 7695 (2009): 629–631.

  23. 23.

    Haigh, Carol, and Pip Hardy. “Tell Me a Story—A Conceptual Exploration of Storytelling in Healthcare Education”. Nurse Education Today 31, no. 4 (2011): 408–411.

  24. 24.

    Nutbeam, Don. “Health Literacy as a Public Health Goal: A Challenge for Contemporary Health Education and Communication Strategies into the 21st Century.” Health Promotion International 15, no. 3 (2000): 259–267.

  25. 25.

    Carlick, A., and Francis C. Biley. “Thoughts on the Therapeutic Use of Narrative in the Promotion of Coping in Cancer Care”. European Journal of Cancer Care 13, no. 4 (2004): 308–317.

  26. 26.

    Bury, Mike. “Illness Narratives: Fact or Fiction?” Sociology of Health & Illness 23, no. 3 (2001): 263–285.

  27. 27.

    Gonzalez-Polledo, Elena. “Chronic Media Worlds: Social Media and the Problem of Pain Communication on Tumblr”. Social Media + Society 2, no. 1 (2016): 2056305116628887.

  28. 28.

    Powell, John, Nikki Newhouse, Anne-Marie Boylan, and Veronika Williams. “Digital Health Citizens and the Future of the NHS”. Digital Health 2 (2016): 2055207616672033.

  29. 29.

    Wagner, Edward H., Susan M. Bennett, Brian T. Austin, Sarah M. Greene, Judith K. Schaefer, and Michael Vonkorff. “Finding Common Ground: Patient-Centeredness and Evidence-Based Chronic Illness Care”. Journal of Alternative & Complementary Medicine 11, no. supplement 1 (2005): s-7.

  30. 30.

    Rogers, Anne, and Nicola Mead. “More Than Technology and Access: Primary Care Patients’ Views on the Use and Non-use of Health Information in the Internet Age”. Health & Social Care in the Community 12, no. 2 (2004): 102–110.

  31. 31.

    D’Auria, Jennifer P. “Googling for Health Information”. Journal of Pediatric Health Care 26, no. 4 (2012): e21–e23.

  32. 32.

    Fox, Susannah, and Kristen Purcell. Chronic Disease and the Internet (Washington, DC: Pew Internet & American Life Project, 2010).

  33. 33.

    Grant, Richard W., Enrico Cagliero, Henry C. Chueh, and James B. Meigs. “Internet Use Among Primary Care Patients with Type 2 Diabetes”. Journal of General Internal Medicine 20, no. 5 (2005): 470–473.

  34. 34.

    Basch, Ethan M., Howard T. Thaler, Weiji Shi, Sofia Yakren, and Deborah Schrag. “Use of Information Resources by Patients with Cancer and Their Companions”. Cancer 100, no. 11 (2004): 2476–2483.

  35. 35.

    Berger, Magdalena, Todd H. Wagner, and Laurence C. Baker. “Internet Use and Stigmatized Illness”. Social Science & Medicine 61, no. 8 (2005): 1821–1827.

  36. 36.

    Kontos, Emily, Kelly D. Blake, Wen-Ying Sylvia Chou, and Abby Prestin. “Predictors of eHealth Usage: Insights on the Digital Divide from the Health Information National Trends Survey 2012”. Journal of Medical Internet Research 16, no. 7 (2014): e172.

  37. 37.

    Ayers, Stephanie L., and Jennie Jacobs Kronenfeld. “Chronic Illness and Health-Seeking Information on the Internet”. Health 11, no. 3 (2007): 327–347.

  38. 38.

    Cotten, Shelia R. “Implications of Internet Technology for Medical Sociology in the New Millennium”. Sociological Spectrum 21, no. 3 (2001): 319–340.

  39. 39.

    Gere, Cathy, and Bronwyn Parry. “The Flesh Made Word: Banking the Body in the Age of Information”. Biosocieties 1, no. 1 (2006): 41–54.

  40. 40.

    Goffman, Erving. “Response Cries”. Language (1978): 787–815.

  41. 41.

    Nettleton, Sarah, Roger Burrows, and Lisa O’Malley. “The Mundane Realities of the Everyday Lay Use of the Internet for Health, and Their Consequences for Media Convergence”. Sociology of Health & Illness 27, no. 7 (2005): 972–992.

  42. 42.

    Bailey, S. Jeffrey, Diane L. LaChapelle, Sandra M. LeFort, Allan Gordon, and Thomas Hadjistavropoulos. “Evaluation of Chronic Pain-Related Information Available to Consumers on the Internet”. Pain Medicine 14, no. 6 (2013): 855–864.

  43. 43.

    Corcoran, Tomás B., Fran Haigh, Amanda Seabrook, and Stephan A. Schug. “The Quality of Internet-Sourced Information for Patients with Chronic Pain is Poor”. The Clinical Journal of Pain 25, no. 7 (2009): 617–623.

  44. 44.

    Henderson, Ellen M., Edmund Keogh, Benjamin A. Rosser, and Christopher Eccleston. “Searching the Internet for Help with Pain: Adolescent Search, Coping, and Medication Behaviour”. British Journal of Health Psychology 18, no. 1 (2013): 218–232.

  45. 45.

    de Boer, Maaike J., Gerbrig J. Versteegen, and Marten van Wijhe. “Patients’ Use of the Internet for Pain-Related Medical Information”. Patient Education and Counseling 68, no. 1 (2007): 86–97.

Acknowledgements

We are grateful to Dr Clare Dow (nee Mortimer) who conducted the original study for HealthTalk.org on experiences of chronic pain. Her research was supported by Queen Margaret University College Edinburgh and The Health Foundation.

Author information

Authors and Affiliations

  1. University of Oxford, Oxford, UK

    Nikki Newhouse & Sue Ziebland

  2. University of Warwick, Coventry, UK

    Helen Atherton

Authors
  1. Nikki Newhouse
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Helen Atherton
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sue Ziebland
    View author publications

    You can also search for this author in PubMed Google Scholar

Editor information

Editors and Affiliations

  1. Department of Anthropology Goldsmiths, University of London, London, United Kingdom

    EJ Gonzalez-Polledo

  2. London School of Economics and Political Science, London, United Kingdom

    Jen Tarr

Copyright information

© 2018 The Author(s)

About this chapter

Cite this chapter

Newhouse, N., Atherton, H., Ziebland, S. (2018). Pain and the Internet: Transforming the Experience?. In: Gonzalez-Polledo, E., Tarr, J. (eds) Painscapes. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-349-95272-4_7

Download citation

  • DOI: https://doi.org/10.1057/978-1-349-95272-4_7

  • Published:

  • Publisher Name: Palgrave Macmillan, London

  • Print ISBN: 978-1-349-95271-7

  • Online ISBN: 978-1-349-95272-4

  • eBook Packages: Social SciencesSocial Sciences (R0)

Publish with us

Policies and ethics

Search

Navigation