The power of informal cancer caregivers' writings

<strong>Abstract</strong> <strong>Background</strong>: Cancer is a disease that disrupts not only the patient’s life, but that of the entire family as well, from a care, organizational, and emotional perspective. Patients share their experience of illness frequently with their informal caregiver (IC), a partner, son/daughter, friend, volunteer, or any other person in the family or social network who offers to support them during their clinical journey. The purpose of this study was to investigate ICs’ still unknown cancer experiences through the stories of IC participants in a Literary Artistic Competition the IRCCS CRO of Aviano organized, and understand the themes that emerged from their texts and hence, the power of expressive writing. <strong>Materials and Methods</strong>: A qualitative study was carried out on literary texts using Mishler’s three levels of narrative analysis: Thematic (to detect themes and sub-themes); structural (to support the thematic level) and performative (to understand the narratives’ meaning). In addition, the narratives were classified based on Kleinman and Frank’s models. A particular focus was placed on the narratives’ language to identify figures of speech, e.g., metaphors related to cancer. <strong>Results</strong>: Seven main themes emerged from the 40 stories’ thematic analysis: Perceptions of the disease; biographical breakdown; relationships; transformation of the sick body; IC’s role; encounter with death, and strength of memory. The ICs’ stories also highlighted the strengths and weaknesses of the patient’s clinical pathway. ICs are a resource not only for the patient, who, thanks to them, is assured of continuous assistance, but also for the healthcare organization, above all because they serve a relational role as a “bridge” between patients and healthcare workers. ICs have important messages to offer to healthcare organizations. If involved adequately, they can provide a strategic strength in supporting patients and healthcare workers themselves. The in-depth analysis of the themes and sub-themes in this study led the authors to hypothesize that expressive writing benefit ICs with respect to the possibility of sharing their experiences with others and giving evidence of their role. Their stories are a testimony that can help those who face a similar experience.<strong>摘要</strong> <strong>研究背景</strong>：癌症不仅会扰乱患者本人的生活，从照护、组织协调与情感层面而言，也会对整个家庭造成冲击。患者常会将自身的患病体验分享给非正式照护者（informal caregiver, IC）——即伴侣、子女、朋友、志愿者，或是任何在患者临床诊疗过程中主动提供支持的家人或社会关系成员。本研究旨在通过阿维亚诺IRCCS CRO举办的文学艺术大赛中，非正式照护者参赛者提交的作品，探究尚未被充分认知的癌症照护体验，并剖析参赛文本中浮现的核心主题，以此揭示表达性写作的力量。<strong>材料与方法</strong>：本研究针对文学文本开展质性研究，采用米什勒（Mishler）的三级叙事分析框架：主题层面（用于提取核心主题与子主题）、结构层面（用于支撑主题分析）与表演层面（用于解读叙事的深层内涵）。此外，本研究还基于克莱因曼（Kleinman）与弗兰克（Frank）的模型对叙事文本进行分类，并重点聚焦叙事语言，识别其中的修辞格，例如与癌症相关的隐喻。<strong>研究结果</strong>：对40篇参赛故事的主题分析共提取出7大核心主题：疾病认知、人生轨迹断裂、人际关系、患病躯体的重塑、非正式照护者的角色、直面死亡与记忆的力量。这些非正式照护者的叙事同时也揭示了患者临床诊疗路径的优势与不足。非正式照护者不仅是患者的重要支持资源——患者可通过他们获得持续的照护支持，同时也是医疗保健机构的宝贵资产：其核心价值在于作为患者与医护人员之间的"桥梁"，承担起关系协调的角色。非正式照护者可为医疗保健机构传递极具价值的信息。若能对其进行充分赋能与参与，他们将成为支持患者与医护人员的战略力量。本研究对核心主题与子主题的深入分析促使研究者提出假设：表达性写作有助于非正式照护者与他人分享自身经历，并彰显自身的照护角色价值。这些叙事作品本身便是极具意义的见证，能够为正经历类似处境的人群提供帮助。