{"title":"类脂质肿瘤患者对疾病和治疗的表述:一项定性研究的主题内容分析。","authors":"Valentyn Fournier , Camille Vansimaeys , Marie-Annick Le Borgne , Anne-Emmanuelle Krieger , Cécile Flahault","doi":"10.1016/j.ejon.2024.102644","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Conclusions</h3><p>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.</p></div>","PeriodicalId":51048,"journal":{"name":"European Journal of Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":2.7000,"publicationDate":"2024-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S146238892400142X/pdfft?md5=edbd5a305886492716e5ac626b07a006&pid=1-s2.0-S146238892400142X-main.pdf","citationCount":"0","resultStr":"{\"title\":\"Representations of illness and treatments in patients with desmoid tumors: A thematic content analysis of a qualitative study\",\"authors\":\"Valentyn Fournier , Camille Vansimaeys , Marie-Annick Le Borgne , Anne-Emmanuelle Krieger , Cécile Flahault\",\"doi\":\"10.1016/j.ejon.2024.102644\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Purpose</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Conclusions</h3><p>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.</p></div>\",\"PeriodicalId\":51048,\"journal\":{\"name\":\"European Journal of Oncology Nursing\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2024-06-19\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.sciencedirect.com/science/article/pii/S146238892400142X/pdfft?md5=edbd5a305886492716e5ac626b07a006&pid=1-s2.0-S146238892400142X-main.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European Journal of Oncology Nursing\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S146238892400142X\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Oncology Nursing","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S146238892400142X","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"NURSING","Score":null,"Total":0}
Representations of illness and treatments in patients with desmoid tumors: A thematic content analysis of a qualitative study
Purpose
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.
期刊介绍:
The European Journal of Oncology Nursing is an international journal which publishes research of direct relevance to patient care, nurse education, management and policy development. EJON is proud to be the official journal of the European Oncology Nursing Society.
The journal publishes the following types of papers:
• Original research articles
• Review articles