{"title":"The Patient Experience of Ocular Melanoma: An Interpretive Description.","authors":"Jennifer M L Stephens, Chenoa Williams","doi":"10.1177/23743735251383212","DOIUrl":null,"url":null,"abstract":"<p><p>The purpose of this study was to explore the patient experience of individuals diagnosed with ocular melanoma (OM). This qualitative study was guided by Interpretive Description. Nine participants (N = 9) participated in interviews. A focus group (n = 7) was conducted at the end of the study to discuss and confirm themes. WORD, EXCEL, and NVIVO were used for data collection and analysis and EQUATOR guidelines (COREQ) were followed. This study revealed three themes: the entangled self, perils of survivorship, and self-advocacy. The participants in this study described how they discovered their OM, the treatments they faced, and the deep sense of loss from the disruption of sight. The participants also highlighted the importance of understanding OM as an ongoing, lifelong cancer experience that is rarely acknowledged by healthcare providers. Understanding the journey of OM patients as cancer survivors is critical for both oncology and general healthcare providers. With improved recognition, better patient-centered care could be provided affecting both physiological and psychological health of OM patients.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251383212"},"PeriodicalIF":1.8000,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12457750/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient Experience","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23743735251383212","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
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Abstract
The purpose of this study was to explore the patient experience of individuals diagnosed with ocular melanoma (OM). This qualitative study was guided by Interpretive Description. Nine participants (N = 9) participated in interviews. A focus group (n = 7) was conducted at the end of the study to discuss and confirm themes. WORD, EXCEL, and NVIVO were used for data collection and analysis and EQUATOR guidelines (COREQ) were followed. This study revealed three themes: the entangled self, perils of survivorship, and self-advocacy. The participants in this study described how they discovered their OM, the treatments they faced, and the deep sense of loss from the disruption of sight. The participants also highlighted the importance of understanding OM as an ongoing, lifelong cancer experience that is rarely acknowledged by healthcare providers. Understanding the journey of OM patients as cancer survivors is critical for both oncology and general healthcare providers. With improved recognition, better patient-centered care could be provided affecting both physiological and psychological health of OM patients.
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