Communicating the experience of living with chronic pain: The role of non-verbal communication and the power of lessons learned
DOI:
https://doi.org/10.7146/qhc.134096Keywords:
chronic pain, cognitive behavioral therapy, illness narrative, mindfulness-based training, pain management, patient-provider communication, therapeutic writingAbstract
Background: Chronic pain is hard to communicate due to its invisible, inaudible, and imprecise nature. Outside of pain scales that try to quantify pain, individuals with chronic pain have a hard time expressing it, yet pain management relies on effective communication. This study explores how women with chronic pain enrolled in an online therapeutic writing workshop communicate the experience of living with chronic pain to fellow sufferers. Methods: A six-week online therapeutic writing workshop was conducted with individuals with chronic pain who responded to weekly creative writing prompts that focused on mindfulness and cognitive behavioral therapy strategies including attention, emotional regulation, and examining thoughts and attitudes. Participants were recruited by their primary care provider; seven participants enrolled. All posts were aggregated and analyzed using thematic analysis. Results: Data analysis from participants’ posts reveal two interpretive repertoires including physical evidence of pain where participants expressed visible impacts of pain occurring in their home environments and communicated non-verbally in gestures and behaviors. Secondly, the theme of lessons learned from living with pain emerged including enhanced empathy, the need for self-care, and sharing coping skills. Conclusion: This study extends our understanding of the experience of living with chronic pain outside of a medical context by providing new insights gained from their creative writing responses. The online therapeutic writing workshop fostered a community of support where participants were empowered to express their pain, identify their pain behaviors, and invite cognitive restructuring to learn from their pain.
References
Akhani, P., Mendpara, S., Palan, B. & Harsoda, J. (2014). Gender differences in response to experimental pain among medical students from a western state of India. International Journal of Medical Students, 2(1), 13-17. https://doi.org/10.5195/ijms.2014.69
Becker, K.L. (2020). Tell me your dreams and goals: Structuring communication exchange to improve patient-centered care with chronic pain patients. Applied Nursing Research, 53. https://doi.org/10.1016/j.apnr.2020.151248
Becker, K.L. (2013). Cyberhugs: Creating a voice for chronic pain sufferers through technology. Cyberpsychology, Behavior, and Social Networking, 16(2), 123-126. https://doi.org/10.1089/cyber.2012.0361
Beck, R.S., Daughtridge, R., & Smloane, P.D. (2002). Physician–patient communication in the primary care office: a systematic review. Journal of the American Board of Family Practice, 15(1), 25-38.
Berger, R. (2015). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219-234. https://doi:10.1177/1468794112468475
Birk, L.B. (2013). Erasure of the credible subject: An autoethnographic account of chronic pain. Cultural Studies, Critical Methodologies, 1-10. https://doi:10.1177/1532708613495799
Bombardier, C.H., D’Amico, C., & Jordan, J.S. (1990). The relationship of appraisal and coping to chronic illness adjustment. Behaviour Research Therapy, 28(4), 297-304. https://doi:10.1016/0005-7967(90)90081-s
Booker SQ., Cousin, L. & Buck, H.G. (2019). “Puttin’ on”: Expectations versus family responses, the lived experience of older African Americans with chronic pain. Journal of Family Nursing, 25(4). https://doi.org/10.1177/1074840719884560
Bolton, G. (2008). “Writing is a way of saying things I can’t say”—therapeutic creative writing: a qualitative study of its value to people with cancer cared for in cancer and palliative healthcare. Medical Humanities, 34, 40-46. https://doi.org/10.1136/jmh.2007.000255
Bourke, J. (2014). The Story of Pain. From Prayer to Painkillers. Oxford University Press.
Braddock, C.H., Edwards, K.A., Hasenberg, N.M., Laidley, T.L., & Levinson, W. (1999). Informed decision making in outpatient practice: Time to get back to basics. JAMA 282(24), 2313-20. https://doi.org/10.1001/jama.282.24.2313
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
Castro, M.M.C., Daltro, C., Kraychete, D.C. & Lopes, J. (2012). The cognitive behavioral therapy causes an improvement in quality of life in patients with chronic musculoskeletal pain. Arq Neuropsiquiatr, 70(11), 864-8. https://doi.org/10.1590/s0004-282x2012001100008
Cohen, M., Quintner, J., Buchanan, D., Nielsen, M., & Guy, L. (2011). Stigmatization of patients with chronic pain: the extinction of empathy. Pain medicine (Malden, Mass.), 12(11), 1637-1643. https://doi.org/10.1111/j.1526-4637.2011.01264.x
Dahlhamer, J., Lucas, J., Zelaya, C., Nahin, R., Mackey, S., DeBar, L., Kerns, R., Von Korff, M., Porter, L., & Helmick, C. (2018). Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults - United States, 2016. MMWR. Morbidity and mortality weekly report, 67(36), 1001-1006. https://doi.org/10.15585/mmwr.mm6736a2
Danise, E.J. & Turk, D.C. (2013). Assessment of patients with chronic pain. British Journal of Anesthesia, 111(1), 19-25. https://doi.org/10.1093/bja/aet124
Dysvik, E., Drageset, J. & Furnes, B. (2016). Narrative approach for identifying movements of change and the value of therapeutic writing related to chronic pain management. Open Journal of Nursing, 6, 1052-1063. https://doi.org/10.4236/ojn.2016.612100
Eaton, L.H. & Hulett, J.M. (2019). Mind-body interventions in the management of chronic cancer pain. Seminars in Oncology Nursing, 35(3), 241-252. https://doi.org/10.1016/j.soncn.2019.04.005
Fernandez, E. (2002). Anxiety, Depression, and Anger in Pain: Research and Clinical Options. Dallas, TX: Advanced Psychological Resources, Inc.
Foley, H.E., Knight, J.C., Ploughman, M., Asghari, S. & Audas, R. (2021). Association of chronic pain with comorbidities and health care utilization: A retrospective cohort study using health administrative data. Pain, 162(11), 2737-2749. https://doi.org/10.1097/j.pain.0000000000002264
Freeman, D. (2020). Top causes of chronic pain. WebMD. Retrieved from https://www.webmd.com/pain-management/features/causes-pain#1
Furnes, B. & Dysvik, E. (2012). Therapeutic writing and chronic pain: Experiences of therapeutic writing in a cognitive behavioural programme for people with chronic pain. Journal of Clinical Nursing, 21(23-24), 3372-3381. https://doi.org/10.1111/j.1365-2702.2012.04268.x
Gonzalez-Polledo, E. & Tarr, J. (2016). The thing about pain: The remaking of illness narratives in chronic pain expressions on social media. New Media & Society, 18(8), 1455-1472. https://doi.org/10.1177/1461444814560126
Guillory, J., Chang, P., Henderson, C.R. Jr., Shengelia, R., Lama, S., Warmington, M., Reid, M.C. (2015). Piloting a text message-based social support intervention for patients with chronic pain: Establishing feasibility and preliminary efficacy. The Clinical Journal of Pain, 31(6), 548-56. https://doi.org/10.1097/AJP.0000000000000193
Haertl, K. & Ero-Phillips, A.M. (2017). The healing properties of writing for persons with mental health conditions. Arts & Health, 11(1), 15-25. https://doi.org/10.1080/17533015.2017.1413400
Hadjistavropoulos, T. & Craig, K.D. (2002). A theoretical framework for understanding self-report and observational measures of pain: A communications model. Behaviour Research and Therapy, 40(5), 551-570. https://doi.org/10.1016/S0005-7967(01)00072-9
Helen, C. & Zimmerman, C.T. (2019). Use of Creative Writing to Illustrate Lived Experiences in Hemodialysis-Dependent Children with Chronic Kidney Failure. Nephrology Nursing Journal, 46(3), 293-336.
Hoffman, D.E. & Tarzian, A.J. (2001). The girl who cried pain: a bias against women in the treatment of pain. Journal of Law Medicine & Ethics, 29(1),13-27. https//doi.org/10.1111/j.1748-720x.2001.tb00037.x.
Institute of Medicine. (2011). Relieving pain in America: A blueprint for transforming prevention, care, education, and research. National Academies Press.
Jackson, J. (1994). Chronic pain and the tension between the body as subject and object. In. T. J. Csordas (Ed.), Embodiment and Experience: The Existential Ground of Culture and Self. (201-227). Cambridge University Press.
Jairath, N. (1999). Myocardial infarction patients’ use of metaphors to share meaning and communicate underlying frames of experience. Journal of Advanced Nursing, 29(2), 283-289. https://doi.org/10.1046/j.1365-2648.1999.00838.x
Jaworska, S. & Ryan, K. (2018). Gender and the language of pain in chronic and terminal illness: A corpus-based discourse analysis of patients’ narratives. Social Science & Medicine, 215, 107-114. https://doi.org/10.1016/j.socscimed.2018.09.002
Jiang, Y., Xu, T., Mao, F., Miao, Y., Liu, B., Xu, L., Li, L., Sternbach, N., Zhou, M., & Fan, B. (2022). The prevalence and management of chronic pain in the Chinese population: findings from the China Pain Health Index (2020). Population health metrics, 20(1), 20. https://doi.org/10.1186/s12963-022-00297-0
Jones, T., Lookatch, S., & Moore, T. (2013). Effects of a single session group intervention for pain management in chronic pain patients: A pilot study. Pain & Therapy, 2(1), 57-64. https://doi.org/10.1007/s40122-013-0012-0
Kerns, R. D., Sellinger, J., & Goodin, B. R. (2011). Psychological treatment of chronic pain. Annual review of clinical psychology, 7, 411–434. https://doi.org/10.1146/annurev-clinpsy-090310-120430
Knoerl, R., Smith, E.M.L. & Weisberg, J. (2016). Chronic pain and cognitive behavioral therapy: An integrated review. Western Journal of Nursing Research, 38(5), 596-628. https://doi.org/10.1177/0193945915615869
Lee, A., Piette, J.D., Heisler, M., Janevic, M., Langa, K.M., & Rosland, A-M. (2017). Family members’ experience supporting adults with chronic illness: A national survey. Family Systems Health, 35(4), 463-473. https://doi.org/10.1037/fsh0000293
Lim, J. A., Choi, S. H., Lee, W. J., Jang, J. H., Moon, J. Y., Kim, Y. C., & Kang, D. H. (2018). Cognitive-behavioral therapy for patients with chronic pain: Implications of gender differences in empathy. Medicine, 97(23), e10867. https://doi.org/10.1097/MD.0000000000010867
Lim, J-A., Choi, S-H., Lee, W.J., Jang, J.H., Moon, J.Y., Kim, Y.C. & Kang, D-H. (2018). Cognitive-behavioral therapy for patients with chronic pain. Medicine, 97(23), e10867. https://doi.org/10.1097/MD.0000000000010867
Linton, S.J., Flink, I.K., & Vlaeyen, J.W.S. (2018). Understanding the etiology of chronic pain from a psychological perspective. Physical Therapy, 98(5), 315-314. https://doi.org/10.1093/ptj/pzy027
Lumley, M.A., Sklar, E.R., & Carty, J.N. (2012). Emotional disclosure interventions for chronic pain: From the laboratory to the clinic. Translational Behavioral Medicine, 2(1), 73-81. https://doi.org/10.1007/s13142-011-0085-4
Ma, J., Wang, X., Qiu, Q., Zhan, H. & Wu, W. (2020). Changes in empathy in patients with chronic low back pain: A structural functional magnetic resonance imaging study. Frontiers in Human Neuroscience, 14, 326. https://doi.org/10.3389/fnhum.2020.00326
Main, S. (2014). Picturing pain: Using creative methods to communicate the experience of chronic pain. British Pain Society, 12(1), 32-40.
Marchand, W.R. (2012). Mindfulness-based stress reduction, mindfulness-based cognitive therapy and Zen meditation for depression, anxiety, pain, and psychological distress. Journal of Psychiatric Practice, 18(4), 233-252.
Morasco, B., Lovejoy, T., Hyde,S., Shull, S. & Dobscha, S. (2018). Limitations of pain numeric rating scale scores collected during usual care: Nee for enhanced assessment. The Journal of Pain, 19(3), S57-58. https://doi.org/10.1016/j.jpain.2017.12.145
Morris, D.B. (1998). Illness and Culture in the Postmodern Age. University of California Press.
Ressler, P.K., Bradshaw, Y.S., Gualtieri, L. & Chui, K.K.H. (2012). Communicating the experience of chronic pain and illness through blogging. Journal of Medical Internet Research, 14(5), e143. https://doi.org/10.2196/jmir.2002
Silver, J.K. (2004). Chronic Pain and the Family: A New Guide. Harvard University Press.
Smith, M.Y., Winkel, G., Egert, J., Diaz-Wionczek, M-D, & DuHamel, K.N. (2006) Patient-physician communication in the context of persistent pain: Validation of a modified version of the patients’ perceived involvement in care scale. Journal of Pain and Symptom Management 32, 71-81. https://doi.org/10.1016/j.jpainsymman.2006.01.007
Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Sage.
Strong, J., Mathews, T., Sussex, R., New, F., Hoey, S., & Mitchell, G. (2009). Pain language and gender differences when describing a past pain event. Pain, 145(1), 86-95. https://doi.org/10.1016/j.pain.2009.05.018
Tosas, M.R. (2021). The downgrading of pain sufferers’ credibility. Philosophy, Ethics, and Humanities in Medicine, 16(8), https://doi.org/10.1186/s13010-021-00105-x
Weiss, R. W. (1994). Learning from strangers: The art and method of qualitative interview studies. The Free Press.
Werner, A. & Malterud, K. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409-1419. https://doi.org/10.1016/s0277-9536(02)00520-8
Werner, A., Isaksen, L., & Malterud, K. (2004). “I am not the kind of woman who complains of everything”—Illness stories on self and shame in women with chronic pain. Social Science & Medicine, 59, 1035-1045. https://doi.org/10.1016/j.socscimed.2003.12.001
Werner, A., Steihaug, S., & Malterud, K. (2003). Encountering the continuing challenges for women with chronic pain: Recovery through recognition. Qualitative Health Research, 13, 491-509. https://doi.org/10.1177/1049732302250755
Whitten, C.E. & Cristobal, K. (2005). Chronic pain is a chronic condition, not just a symptom. The Permanente Journal, 9(3), 43-51. https://doi.org/10.7812/tpp/04-139
Xiang, Y., Wang, Y., Gao, S., Zhang, X., & Cui, R. (2018). Neural Mechanisms With Respect to Different Paradigms and Relevant Regulatory Factors in Empathy for Pain. Frontiers in neuroscience, 12, 507. https://doi.org/10.3389/fnins.2018.00507
Zeidan, F., & Vago, D.R. (2016). Mindfulness meditation-based pain relief: A mechanistic account. Annals of the New York Academy of Sciences, 1373(1), 114-127. https://doi.org/10.1111/nyas.13153
Zgierska, A. E., Burzinski, C. A., Garland, E. L., Lennon, R. P., Jamison, R., Nakamura, Y., Barrett, B., Sehgal, N., Mirgain, S. A., Singles, J. M., Cowan, P., Woods, D., & Edwards, R. R. (2021). Mindfulness-based therapy compared to cognitive behavioral therapy for opioid-treated chronic low back pain: Protocol for a pragmatic randomized controlled trial. Contemporary clinical trials, 110, 106548. https://doi.org/10.1016/j.cct.2021.106548
Zhang, J., Xu, R., Wang, B., & Wang, J. (2016). Effects of mindfulness-based therapy for patients with breast cancer: A systematic review and meta-analysis. Complementary Therapies in Medicine, 26, 1-10. https://doi.org/10.1016/j.ctim.2016.02.012
Ziebland, S. (2004). The importance of being expert: The quest for cancer information on the Internet. Social Science & Medicine, 59(9), 1783-1793. https://doi.org/10.1016/j.socscimed.2004.02.019
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