資料載入中.....
|
請使用永久網址來引用或連結此文件:
https://nccur.lib.nccu.edu.tw/handle/140.119/158498
|
| 題名: | 初探慢性疼痛病人面對不被相信與不被理解的經驗
Exploring the Experiences of Disbelief and Misunderstanding among Chronic Pain Patients: A Preliminary Study |
| 作者: | 黃珮晴
Huang, Pei-Ching |
| 貢獻者: | 吳治勳
Wu, Chih-Hsun
黃珮晴
Huang, Pei-Ching |
| 關鍵詞: | 慢性疼痛
不被相信
不被理解
半結構式訪談
框架分析法
Chronic pain
Disbelief
Misunderstanding
Semi-structured interviews
Framework analysis |
| 日期: | 2025 |
| 上傳時間: | 2025-08-04 14:05:24 (UTC+8) |
| 摘要: | 研究目的：由於慢性疼痛常缺乏外顯的表現、缺乏生理證據及大眾對其認識有限，使得慢性疼痛患者經常遭遇質疑、不被相信、不理解與忽視。這些經驗可能影響其情緒、社交互動、醫病關係、治療效果與就醫行為，不僅減少患者應對壓力的資源，也加重其心理社會負擔。然而過往少有研究針對此現象深入討論，且對於影響歷程尚不清楚。因此，本研究以台灣慢性疼痛患者為對象，探索他們面對不被相信與不被理解的經驗。
研究問題：本研究欲了解台灣慢性疼痛患者遭遇不被相信與不被理解的（1）普遍性；（2）對象及來源事件；（3）患者的主觀經驗；（4）患者的反應；（5）後續影響。
研究方法：本研究於北部某醫學中心門診收案，對象為20歲以上的慢性疼痛患者，排除癌症與無法對談者。本研究以半結構式訪談方法蒐集資料，訪談大綱包含疼痛與治療經驗、人際關係狀態，及不被相信、不被理解相關互動經驗。訪談過程中，研究者透過追問或舉例以釐清及聚焦於本研究關注之問題。以框架分析法進行訪談資料的分析。
研究結果：本研究由醫師轉介共58位慢性疼痛患者參與訪談。經資料整理後，共有36位受訪者（62.1%）報告了與不被相信及不被理解相關的經驗，另有22位（佔總人數的37.9%）未提及。納入分析的36位受訪者，報告不被相信及不被理解相關的經驗對象涵蓋家庭成員、醫療場域、朋友、鄰居、職場、學校及其他關係。以框架分析法分析資料後，將慢性疼痛患者不被相信與不被理解之經驗歸納為五大主題：「疼痛經驗的真實性被質疑」、「疼痛的嚴重性被質疑」、「疼痛的影響被低估」、「疼痛需求被忽視」、及「不當態度與回應」。在這五大主題下細分出十九個類別：「不相信疼痛」、「醫療情境否定疼痛存在」、「看起來沒事」、「質疑裝病」、「疼痛被認為是藉口」、「質疑誇大疼痛／反應過度」、「低估疼痛程度」、「疼痛程度被做比較」、「不理解疼痛對功能的影響」、「高估能力」、「不理會或沒有回應」、「置身事外／與我無關」、「無視疼痛處境」、「不耐煩」、「開玩笑」、「不以為然」、「應付的態度」、「簡化問題」、及「貼負面標籤」。
討論：本研究的結果顯示不被相信及不被理解的經驗在慢性疼痛患者中具有高度普遍性，超過半數受訪者曾面臨此類情境，其中，最常出現的對象為家庭成員，其次則為醫療場域。這些經驗亦對患者造成明顯影響，如面對家人的不相信與不理解，許多受訪者選擇減少疼痛表達或壓抑疼痛感受；而當這些經驗來自醫療人員時，則常引發強烈的負面情緒。大多受訪者往往試圖澄清自身的疼痛情況，或持續向醫療人員表達需求，然而持續未獲回應或是未獲理解，受訪者會感到更為失望，甚至對醫療場域感到恐懼，選擇忍耐疼痛、避免就醫。
Background: Chronic pain is often characterized by a lack of visible symptoms, limited physiological evidence, and low public awareness. As a result, individuals living with chronic pain frequently encounter skepticism, disbelief, misunderstanding, and neglect. These experiences can significantly impact their emotional well-being, social interactions, doctor-patient relationship, treatment outcomes, and healthcare-seeking behaviors. They not only reduce the resources available for coping with stress but also exacerbate patients’ psychosocial burdens. Despite the prevalence of such experiences, few studies have examined this phenomenon in depth, and the underlying processes remain unclear. Therefore, this study aims to explore the experiences of being disbelieved and misunderstood among chronic pain patients in Taiwan.
Objective: This study seeks to examine the following aspects of chronic pain patients’ experiences of being disbelieved and misunderstood: (1) the prevalence of such experiences ; (2) the sources and contextual settings in which they occur; (3) how patients subjectively interpret these interactions; (4) patients’ responses to these experiences; and (5) the subsequent impacts on patient’s lives.
Method: Participants were recruited from the outpatient clinic of a medical center in northern Taiwan. Eligible individuals were aged 20 or above and living with chronic pain, excluding those with cancer or unable to communicate. Data were collected through semi-structured interviews, which covered topics such as pain and treatment experiences, interpersonal relationships, and interactions involving disbelief and misunderstanding. During the interviews, the researcher used follow-up questions and examples to clarify participants’ responses and focus on the issues relevant to the study. The interview data were analyzed using framework analysis.
Results: A total of 58 chronic pain patients were referred by physicians and participated in the interviews. Among them, 36 participants (62.1%) reported experiences of being disbelieved or misunderstood, while 22 participants (37.9%) did not mention such experiences. The 36 participants included in the analysis identified various sources of disbelief and misunderstanding, including family members, healthcare professionals, friends, neighbors, workplaces, schools, and other social relationships. Framework analysis revealed five major themes characterizing these experiences: ‘‘Questioning the authenticity of pain,’’ ‘‘Questioning the severity of pain,’’ ‘‘Underestimating the impact of pain,’’ ‘‘Ignoring pain-related needs,’’ and ‘‘Inappropriate attitudes and responses.’’ These themes were further categorized into 19 subthemes: ‘‘Disbelief in pain,’’ ‘‘Denial of pain in medical settings,’’ ‘‘Misjudging pain based on appearance,’’ ‘‘Suspicions of faking illness,’’ ‘‘Others see pain as an excuse,’’ ‘‘Questioning of exaggeration or overreaction,’’ ‘‘Underestimation of pain severity,’’ ‘‘Comparison of pain severity,’’ ‘‘Lack of understanding of pain’s impact on functioning,’’ ‘‘Overestimation of patients’ abilities,’’ ‘‘Ignoring or failing to respond,’’ ‘‘Detachment or indifference,’’ ‘‘Disregard for the pain situation,’’ ‘‘Impatience,’’ ‘‘Joking,’’ ‘‘Dismissiveness,’’ ‘‘Perfunctory attitudes,’’ ‘‘Oversimplification of the issue,’’ and ‘‘Negative labeling.’’
Discussion: The findings indicate that experiences of being disbelieved and misunderstood are highly prevalent among chronic pain patients, with over half of the participants reporting such encounters. The most frequently cited sources of disbelief and misunderstanding were family members, followed by healthcare professionals. These experiences had notable psychological and behavioral consequences. When facing disbelief and misunderstanding from family members, many participants chose to suppress expression of pain or internalize their suffering. Encounters with disbelief in medical settings often triggered intense negative emotions. While most participants attempted to clarify their pain conditions or persistently communicated their needs to healthcare professionals, repeated lack of acknowledgment or understanding led to growing disappointment. Some participants developed fear or avoidance toward medical environments, opting to endure pain rather than seek care. |
| 參考文獻: | Bean, D. J., Dryland, A., Rashid, U., & Tuck, N. L. (2022). The Determinants and Effects of Chronic Pain Stigma: A Mixed Methods Study and the Development of a Model. The Journal of Pain, 23(10), 1749-1764.
https://doi.org/10.1016/j.jpain.2022.05.006
Blomqvist, K., & Edberg, A. K. (2002). Living with persistent pain: experiences of older people receiving home care. Journal of Advanced Nursing, 40(3), 297-306. https://doi.org/10.1046/j.1365-2648.2002.02371.x
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
Breivik, H., Collett, B., Ventafridda, V., Cohen, R., & Gallacher, D. (2006). Survey of chronic pain in Europe: prevalence, impact on daily life, and treatment. European Journal of Pain, 10(4), 287-333. https://doi.org/10.1016/j.ejpain.2005.06.009
Buchman, D. Z., Ho, A., & Illes, J. (2016). You Present like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management. Pain Medicine, 17(8), 1394-1406. https://doi.org/10.1093/pm/pnv083
Clarke, K. A., & Iphofen, R. (2005). Believing the patient with chronic pain: a review of the literature. British Journal of Nursing, 14(9), 490-493. https://doi.org/10.12968/bjon.2005.14.9.18073
Clarke, K. A., & Iphofen, R. (2008). A phenomenological hermeneutic study into unseen chronic pain. British Journal of Nursing, 17(10), 658-663. https://doi.org/10.12968/bjon.2008.17.10.29482
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310-357. https://doi.org/10.1037/0033-2909.98.2.310
Davis, M. C., Affleck, G., Zautra, A. J., & Tennen, H. (2006). Daily interpersonal events in pain patients: applying action theory to chronic illness. Journal of Clinical Psychology, 62(9), 1097-1113. https://doi.org/10.1002/jclp.20297
Duenas, M., Ojeda, B., Salazar, A., Mico, J. A., & Failde, I. (2016). A review of chronic pain impact on patients, their social environment and the health care system. Journal of Pain Research, 9, 457-467. https://doi.org/10.2147/JPR.S105892
Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13, 117. https://doi.org/10.1186/1471-2288-13-117
Glenton, C. (2003). Chronic back pain sufferers--striving for the sick role. Social Science & Medicine, 57(11), 2243-2252. https://doi.org/10.1016/s0277-9536(03)00130-8
Goffman, E. (1963). Stigma: Notes on the Management of Spoiled Identity. Touchstone. https://books.google.com.tw/books?id=7CNUUMKTbIoC
Gotlib, A. (2012). On the borderlands: Chronic pain as crisis of identity. In Dimensions of Pain (pp. 41-59). Routledge.
Hawkley, L. C., & Cacioppo, J. T. (2010). Loneliness matters: a theoretical and empirical review of consequences and mechanisms. Annals of Behavioral Medicine, 40(2), 218-227. https://doi.org/10.1007/s12160-010-9210-8
Holloway, I., Sofaer-Bennett, B., & Walker, J. (2007). The stigmatisation of people with chronic back pain. Disability and Rehabilitation, 29(18), 1456-1464. https://doi.org/10.1080/09638280601107260
Holt-Lunstad, J., Smith, T. B., Baker, M., Harris, T., & Stephenson, D. (2015). Loneliness and social isolation as risk factors for mortality: a meta-analytic review. Perspectives on Psychological Science, 10(2), 227-237. https://doi.org/10.1177/1745691614568352
Kool, M. B., van Middendorp, H., Boeije, H. R., & Geenen, R. (2009). Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia. Arthritis and Rheumatism, 61(12), 1650-1656. https://doi.org/10.1002/art.24922
Kool, M. B., van Middendorp, H., Lumley, M. A., Schenk, Y., Jacobs, J. W., Bijlsma, J. W., & Geenen, R. (2010). Lack of understanding in fibromyalgia and rheumatoid arthritis: the Illness Invalidation Inventory (3*I). Annals of the Rheumatic Diseases, 69(11), 1990-1995. https://doi.org/10.1136/ard.2009.123224
Lavie-Ajayi, M., Almog, N., & Krumer-Nevo, M. (2012). Chronic pain as a narratological distress: a phenomenological study. Chronic Illness, 8(3), 192-200. https://doi.org/10.1177/1742395312449665
Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science and Medicine, 57(6), 1045-1054. https://doi.org/10.1016/s0277-9536(02)00479-3
Main, C. J., & Spanswick, C. C. (2000). Pain Management: An Interdisciplinary Approach. Churchill Livingstone. https://books.google.com.tw/books?id=r9FWvgAACAAJ
McGowan, L., Luker, K., Creed, F., & Chew-Graham, C. A. (2007). How do you explain a pain that can't be seen?: the narratives of women with chronic pelvic pain and their disengagement with the diagnostic cycle. British Journal of Health Psychology, 12(2), 261-274. https://doi.org/10.1348/135910706X104076
Moulin, D. E., Clark, A. J., Speechley, M., & Morley-Forster, P. K. (2002). Chronic pain in Canada--prevalence, treatment, impact and the role of opioid analgesia. Pain Research and Management, 7(4), 179-184. https://doi.org/10.1155/2002/323085
Newton, B. J., Southall, J. L., Raphael, J. H., Ashford, R. L., & LeMarchand, K. (2013). A narrative review of the impact of disbelief in chronic pain. Pain Manag Nursing, 14(3), 161-171. https://doi.org/10.1016/j.pmn.2010.09.001
Nicola, M., Correia, H., Ditchburn, G., & Drummond, P. (2021). Invalidation of chronic pain: a thematic analysis of pain narratives. Disability and Rehabilitation, 43(6), 861-869. https://doi.org/10.1080/09638288.2019.1636888
Nicola, M., Correia, H., Ditchburn, G., & Drummond, P. D. (2022). Defining pain-validation: The importance of validation in reducing the stresses of chronic pain. Frontiers in Pain Research (Lausanne), 3, 884335. https://doi.org/10.3389/fpain.2022.884335
Ojala, T., Hakkinen, A., Karppinen, J., Sipila, K., Suutama, T., & Piirainen, A. (2015). Although unseen, chronic pain is real-A phenomenological study. Scandinavian Journal of Pain, 6(1), 33-40. https://doi.org/10.1016/j.sjpain.2014.04.004
Okifuji, A., & Turk, D. C. (2015). Behavioral and Cognitive–Behavioral Approaches to Treating Patients with Chronic Pain: Thinking Outside the Pill Box. Journal of Rational-Emotive, & Cognitive-Behavior Therapy, 33(3), 218-238. https://doi.org/10.1007/s10942-015-0215-x
Radley, A. (1994). Making sense of illness: The social psychology of health and disease. Sage.
Richardson, J. C. (2005). Establishing the (extra)ordinary in chronic widespread pain. Health (London, England), 9(1), 31-48. https://doi.org/10.1177/1363459305048096
Smith, J. A., & Osborn, M. (2007). Pain as an assault on the self: An interpretative phenomenological analysis of the psychological impact of chronic benign low back pain. Psychology & Health, 22(5), 517-534. https://doi.org/10.1080/14768320600941756
Steihaug, S., Ahlsen, B., & Malterud, K. (2002). "I am allowed to be myself": women with chronic muscular pain being recognized. Scandinavian Journal of Public Health, 30(4), 281-287. https://doi.org/10.1080/14034940210133960
Waterhouse, M. (1996). Why pain assessment must start with believing the patient. Nursing Times, 92(38), 42-43.
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 |
| 描述: | 碩士
國立政治大學
心理學系
110752015 |
| 資料來源: | http://thesis.lib.nccu.edu.tw/record/#G0110752015 |
| 資料類型: | thesis |
| 顯示於類別: | [心理學系] 學位論文
|
文件中的檔案:
| 檔案 |
描述 |
大小 | 格式 | 瀏覽次數 |
|---|
| 201501.pdf | | 3884Kb | Adobe PDF | 0 | 檢視/開啟 |
|
在政大典藏中所有的資料項目都受到原著作權保護.
|
