On a pathway to resigned acceptance: Patients' experiences of living with symptom clusters in oral cancer.
On a pathway to resigned acceptance: Patients' experiences of living with symptom clusters in oral cancer.
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DOI：
10.1016/j.ejon.2022.102263
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发表时间：
2022-12
期刊：
影响因子：
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通讯作者：
Asha Mathew;A. Tirkey;S. Pavamani;Alana D. Steffen;Mark B Lockwood;Crystal L. Patil;A. Doorenbos
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文献类型：
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作者：
Asha Mathew;A. Tirkey;S. Pavamani;Alana D. Steffen;Mark B Lockwood;Crystal L. Patil;A. Doorenbos
目的口腔癌患者在接受治疗时会同时出现多种症状。在单独接受手术或与其他方法联合治疗的患者中进行了一项更大规模的混合方法研究。质化链的目的是探索与症状群生活在一起的体验。方法采用现象学设计探索生活体验。参与者是从一家三级教学医院的两个门诊单元(N=1300)招募来进行更大规模的研究。调查完成后，从较大的样本中抽取了20名参与者的最大变异目的子样本，并就他们的经历进行了深入的访谈。所有受试者均出现多种并发症状，一般包括咀嚼困难+口干+言语困难；咀嚼困难+口干+味觉减退；咀嚼困难+口干+言语困难+痉挛。分析他们与这些症状群生活在一起的经历，发现了六个主题：公认的干扰、内心对话、变化的期望、情绪的洪流、对生活的控制以及听天由命的接受。这些主题描绘了时间和与症状群生活在一起，导致了我们所描述的听天由命的接受之路。这条路径中混杂着干扰、对“为什么是我”的自我反省和业力、负面情绪，以及对症状恢复的失败期望。通过应对策略、警惕的生活、未来规划和健康倡导者，也揭示了对自己生活进行控制的尝试。随着时间的推移，他们意识到进一步缓解症状的可能性不大，并认为症状群的经历写进了他们的命运，他们走向了听天由命的接受状态。然而，与被动接受不同，他们对命运的信念伴随着韧性，他们不断努力探索实用的方法来应对症状群就是明证。结论发现提供了对患者视角的关键见解，而这些视角在临床环境中往往没有表达出来。需要进一步的研究来探索警惕的生活，命运作为一种应对策略，以及信仰、命运和业力的交织。
PurposePatients treated for oral cancer experience multiple concurrent symptoms. A larger mixed-methods study was conducted among patients who were treated with surgery alone or in combination with other modalities. The aim of the qualitative strand was to explore the experiences of living with symptom clusters.MethodsA phenomenological design was used to explore the lived experiences. Participants were recruited for the larger study from two outpatient units of a tertiary teaching hospital (N = 300). After completion of a survey, a maximum variation purposive subsample of 20 participants was drawn from the larger sample and were interviewed in-depth about their experiences. Thematic analysis was conducted.FindingsAll participants experienced multiple concurrent symptoms, commonly including chewing difficulties + dry mouth + speech difficulties; chewing difficulties + dry mouth + diminished taste; and chewing difficulties + dry mouth + speech difficulties + trismus. Analysis of their experiences of living with these symptom clusters revealed six themes: Acknowledged Disruptions, Inner Dialogue, Shifting Expectations, Floods of Emotions, Exercising Control over Life, and Resigned Acceptance. These themes portrayed that time and living with symptom clusters lead to what we describe as a pathway to resigned acceptance. This pathway is intermingled with disruptions, self-reflections on ‘why me’ and karma, negative emotions, and failed expectations regarding symptom recovery. Attempts to exercise control over their lives were also revealed through coping strategies, watchful living, future planning, and being health advocates. On realizing with time that further symptom alleviation is unlikely, and considering symptom-cluster experiences as being written in their fate, they move towards a state of resigned acceptance. However, unlike passive acceptance, their belief in fate was accompanied with resilience, evidenced by their ongoing efforts to explore pragmatic ways to live with symptom clusters.ConclusionsFindings provide key insights into patient perspectives which most often remain unexpressed in clinical settings. Further research is required to explore watchful living, fate as a coping strategy, and intertwining of faith, fate, and karma.