Abstract：
OBJECTIVE: Desmoid tumors are a rare and complex disease characterized by a great diversity in its forms, localizations, and prognosis. Both the disease and the treatment can have a significant impact on quality of life in patients. Given the complexity of the disease and its rarity, the literature on patients\' experience with the disease scarce. The purpose of this study is to investigate illness representations and subjective experience in participants affected with desmoid tumors.
METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants\' discourse.
RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study.
CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.
METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants\' discourse.
RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study.
CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.
摘要：
目的：纤维瘤是一种罕见且复杂的疾病，其特征是形式多样性很大，本地化,和预后。疾病和治疗都会对患者的生活质量产生重大影响。鉴于这种疾病的复杂性和罕见性，关于患者对这种疾病的经验的文献很少。这项研究的目的是调查患有硬纤维瘤的参与者的疾病表征和主观体验。
方法：在18岁以上的法国患者中使用电话半指导性访谈，诊断为硬纤维瘤。通过一般归纳法对数据进行分析，以识别参与者话语中出现的一般主题。
结果：参与者（8名女性，7名男性)在这项研究中年龄在27到71岁之间。分析揭示了与疾病和治疗有关的八个主要主题，与疾病生活在一起，疾病对与他人关系的影响，疾病和医疗途径，以及疾病引起的身份变化。两个最突出的主题是疾病和治疗表现以及疾病的生活。本研究选择了这些主题。
结论：这些结果为患者纤维瘤的表现和经验提供了新的见解。它为开发更广泛的系统研究的必要性提出了论据，以在所有疾病途径中探索更大样本中的这些变量。的确,这个人群遇到了特殊的问题，呼吁发展特定的社会心理支持。
方法：在18岁以上的法国患者中使用电话半指导性访谈，诊断为硬纤维瘤。通过一般归纳法对数据进行分析，以识别参与者话语中出现的一般主题。
结果：参与者（8名女性，7名男性)在这项研究中年龄在27到71岁之间。分析揭示了与疾病和治疗有关的八个主要主题，与疾病生活在一起，疾病对与他人关系的影响，疾病和医疗途径，以及疾病引起的身份变化。两个最突出的主题是疾病和治疗表现以及疾病的生活。本研究选择了这些主题。
结论：这些结果为患者纤维瘤的表现和经验提供了新的见解。它为开发更广泛的系统研究的必要性提出了论据，以在所有疾病途径中探索更大样本中的这些变量。的确,这个人群遇到了特殊的问题，呼吁发展特定的社会心理支持。
