{"title":"“把自己排除在我最需要的东西之外”:炎症性关节炎患者的孤独经历:一项定性研究。","authors":"Annika Nordkamp, Julie Midtgaard, Annette de Thurah, Bente Glintborg, Mette Aadahl, Pernille Fevejle Cromhout, Sofie Bech Vestergaard, Lene Lau, Connie Yilmaz, Bente Appel Esbensen","doi":"10.1111/1756-185X.70041","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Despite advancements in pharmacological treatments, living with inflammatory arthritis (IA) (including rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial spondyloarthritis (axSpA)) can make it challenging to engage in social activities, which may increase the risk of loneliness. Although loneliness is predominantly prevalent in IA, its origin and impact on mental health status on daily life with IA remain unexplored. Therefore, the objective of this study was to describe the experiences of people with IA in relation to loneliness.</p><p><strong>Methods: </strong>Semi-structured telephone interviews were conducted with purposefully sampled participants who reported loneliness. Reflexive thematic analysis was applied to analyze data.</p><p><strong>Results: </strong>The interviews included fourteen participants (RA (n = 5), PsA (n = 5), and AxSpA (n = 4)) with median age of 47 (range 25-76). We developed three themes: (1) \"Loneliness amplifies the negative impact of IA,\" illustrating the experience of loneliness as an integrated part of the participants' struggles; (2) \"Excluding myself from what I need the most,\" detailing participants' awareness of their need but inability to engage in social activities; and (3) \"Longing for loneliness to be addressed,\" expressing unfulfilled wishes for health professionals to address loneliness.</p><p><strong>Conclusion: </strong>Participants in our study reported that loneliness had a profound impact on their overall well-being and self-management. Overall, there is a critical need to address loneliness as an essential issue for people with IA, highlighting the necessity for increased support and recognition. By addressing loneliness, health professionals can protect patients' mental health and help them navigate social connections, enhancing their self-management and overall well-being.</p>","PeriodicalId":14330,"journal":{"name":"International Journal of Rheumatic Diseases","volume":"28 1","pages":"e70041"},"PeriodicalIF":2.4000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11725708/pdf/","citationCount":"0","resultStr":"{\"title\":\"\\\"Excluding Myself From What I Need the Most\\\": Experiences of Loneliness in People With Inflammatory Arthritis: A Qualitative Study.\",\"authors\":\"Annika Nordkamp, Julie Midtgaard, Annette de Thurah, Bente Glintborg, Mette Aadahl, Pernille Fevejle Cromhout, Sofie Bech Vestergaard, Lene Lau, Connie Yilmaz, Bente Appel Esbensen\",\"doi\":\"10.1111/1756-185X.70041\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>Despite advancements in pharmacological treatments, living with inflammatory arthritis (IA) (including rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial spondyloarthritis (axSpA)) can make it challenging to engage in social activities, which may increase the risk of loneliness. Although loneliness is predominantly prevalent in IA, its origin and impact on mental health status on daily life with IA remain unexplored. Therefore, the objective of this study was to describe the experiences of people with IA in relation to loneliness.</p><p><strong>Methods: </strong>Semi-structured telephone interviews were conducted with purposefully sampled participants who reported loneliness. Reflexive thematic analysis was applied to analyze data.</p><p><strong>Results: </strong>The interviews included fourteen participants (RA (n = 5), PsA (n = 5), and AxSpA (n = 4)) with median age of 47 (range 25-76). We developed three themes: (1) \\\"Loneliness amplifies the negative impact of IA,\\\" illustrating the experience of loneliness as an integrated part of the participants' struggles; (2) \\\"Excluding myself from what I need the most,\\\" detailing participants' awareness of their need but inability to engage in social activities; and (3) \\\"Longing for loneliness to be addressed,\\\" expressing unfulfilled wishes for health professionals to address loneliness.</p><p><strong>Conclusion: </strong>Participants in our study reported that loneliness had a profound impact on their overall well-being and self-management. Overall, there is a critical need to address loneliness as an essential issue for people with IA, highlighting the necessity for increased support and recognition. By addressing loneliness, health professionals can protect patients' mental health and help them navigate social connections, enhancing their self-management and overall well-being.</p>\",\"PeriodicalId\":14330,\"journal\":{\"name\":\"International Journal of Rheumatic Diseases\",\"volume\":\"28 1\",\"pages\":\"e70041\"},\"PeriodicalIF\":2.4000,\"publicationDate\":\"2025-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11725708/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Rheumatic Diseases\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1111/1756-185X.70041\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"RHEUMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Rheumatic Diseases","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/1756-185X.70041","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"RHEUMATOLOGY","Score":null,"Total":0}
"Excluding Myself From What I Need the Most": Experiences of Loneliness in People With Inflammatory Arthritis: A Qualitative Study.
Objective: Despite advancements in pharmacological treatments, living with inflammatory arthritis (IA) (including rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial spondyloarthritis (axSpA)) can make it challenging to engage in social activities, which may increase the risk of loneliness. Although loneliness is predominantly prevalent in IA, its origin and impact on mental health status on daily life with IA remain unexplored. Therefore, the objective of this study was to describe the experiences of people with IA in relation to loneliness.
Methods: Semi-structured telephone interviews were conducted with purposefully sampled participants who reported loneliness. Reflexive thematic analysis was applied to analyze data.
Results: The interviews included fourteen participants (RA (n = 5), PsA (n = 5), and AxSpA (n = 4)) with median age of 47 (range 25-76). We developed three themes: (1) "Loneliness amplifies the negative impact of IA," illustrating the experience of loneliness as an integrated part of the participants' struggles; (2) "Excluding myself from what I need the most," detailing participants' awareness of their need but inability to engage in social activities; and (3) "Longing for loneliness to be addressed," expressing unfulfilled wishes for health professionals to address loneliness.
Conclusion: Participants in our study reported that loneliness had a profound impact on their overall well-being and self-management. Overall, there is a critical need to address loneliness as an essential issue for people with IA, highlighting the necessity for increased support and recognition. By addressing loneliness, health professionals can protect patients' mental health and help them navigate social connections, enhancing their self-management and overall well-being.
期刊介绍:
The International Journal of Rheumatic Diseases (formerly APLAR Journal of Rheumatology) is the official journal of the Asia Pacific League of Associations for Rheumatology. The Journal accepts original articles on clinical or experimental research pertinent to the rheumatic diseases, work on connective tissue diseases and other immune and allergic disorders. The acceptance criteria for all papers are the quality and originality of the research and its significance to our readership. Except where otherwise stated, manuscripts are peer reviewed by two anonymous reviewers and the Editor.