{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,29]],"date-time":"2026-08-29T14:15:50Z","timestamp":1788012950426,"version":"build-2784847793"},"reference-count":34,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T00:00:00Z","timestamp":1777939200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100012400","name":"Sigma Theta Tau International","doi-asserted-by":"publisher","award":["Phi Chapter Research Grant"],"award-info":[{"award-number":["Phi Chapter Research Grant"]}],"id":[{"id":"10.13039\/100012400","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Hematology\/Oncology Nursing"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>The purpose of this study was to explore the experience of stigma among young adults living with sickle cell disease (SCD) using a hermeneutic phenomenological design.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>Seven young adults diagnosed with SCD participated in semi-structured interviews to explore their experience of stigma as young adults living with SCD. Interviews were transcribed verbatim and analyzed using interpretive phenomenology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      The participants\u2019 narratives revealed an overarching theme of\n                      <jats:italic toggle=\"yes\">the shadows,<\/jats:italic>\n                      representing their experience with stigma. The three subthemes further define how they navigate the shadow of stigma and move through varying degrees of dark and light to balance authenticity and protection. Subthemes include (a) the umbra\u2014darkness, (b) the penumbra\u2014dark and light collide, and (c) the antumbra\u2014light.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>This study reveals the complex realities of young adults with SCD as they navigate stigma. Each narrative reinforced how stigma is ever-present in their experiences in healthcare, the public, and among family and friends. This research can help health professionals understand the influence stigma has on how young adults with SCD perceive themselves, interact with others, and engage in health-seeking behaviors and highlights the need to address stigma as a structural barrier to health equity.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/27527530261424176","type":"journal-article","created":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T13:11:26Z","timestamp":1777986686000},"page":"205-215","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Navigating the Shadows of Stigma in Sickle Cell Disease: A Phenomenological Study"],"prefix":"10.1177","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5447-5624","authenticated-orcid":false,"given":"Abby O.","family":"Seydel","sequence":"first","affiliation":[{"name":"South Dakota State University College of Nursing"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary J.","family":"Isaacson","sequence":"additional","affiliation":[{"name":"University of Nebraska Medical Center College of Nursing - Omaha Division, Omaha, NE, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9426-5453","authenticated-orcid":false,"given":"Brandon M.","family":"Varilek","sequence":"additional","affiliation":[{"name":"University of Nebraska Medical Center College of Nursing - Omaha Division, Omaha, NE, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,5,5]]},"reference":[{"key":"e_1_3_3_2_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2018-99-117558"},{"key":"e_1_3_3_3_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781071909669"},{"key":"e_1_3_3_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/10245332.2017.1359898"},{"key":"e_1_3_3_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40615-022-01483-4"},{"key":"e_1_3_3_6_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamahealthforum.2023.0877"},{"key":"e_1_3_3_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/01612840.2018.1443530"},{"key":"e_1_3_3_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.copsyc.2019.07.031"},{"key":"e_1_3_3_9_1","doi-asserted-by":"publisher","DOI":"10.1590\/0034-7167-2020-0831"},{"key":"e_1_3_3_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/1043659619896837"},{"key":"e_1_3_3_11_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781529799583"},{"key":"e_1_3_3_12_1","doi-asserted-by":"publisher","DOI":"10.1097\/MD.0000000000036147"},{"key":"e_1_3_3_13_1","volume-title":"Stigma: Notes on the management of spoiled identity","author":"Goffman E.","year":"1963","unstructured":"Goffman E. (1963). Stigma: Notes on the management of spoiled identity. Prentice-Hall."},{"key":"e_1_3_3_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/13557858.2020.1817340"},{"key":"e_1_3_3_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)30732-X"},{"key":"e_1_3_3_16_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020001743"},{"key":"e_1_3_3_17_1","doi-asserted-by":"publisher","DOI":"10.15453\/0191-5096.2606"},{"key":"e_1_3_3_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27463"},{"key":"e_1_3_3_19_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781452204727.n3"},{"key":"e_1_3_3_20_1","doi-asserted-by":"publisher","DOI":"10.1177\/1609406918786362"},{"key":"e_1_3_3_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jnma.2018.08.001"},{"key":"e_1_3_3_22_1","article-title":"People with sickle cell disease face damaging stigma","volume":"386","author":"Nadimpally S.","year":"2024","unstructured":"Nadimpally S., Tella K. K., Mishra G. (2024). People with sickle cell disease face damaging stigma. BMJ, 386, Article q1543. https:\/\/doi.org\/10.1136\/bmj.q1543","journal-title":"BMJ"},{"key":"e_1_3_3_23_1","volume-title":"Addressing sickle cell disease: A strategic plan and blueprint for action","author":"National Academies of Sciences, E., Medicine, Health, Medicine, D., Board on Population, H., Public Health, P., Committee on Addressing Sickle Cell Disease, A. S. P., & Blueprint for, A","year":"2020","unstructured":"National Academies of Sciences, E., Medicine, Health, Medicine, D., Board on Population, H., Public Health, P., Committee on Addressing Sickle Cell Disease, A. S. P., & Blueprint for, A. (2020). Addressing sickle cell disease: A strategic plan and blueprint for action. National Academies Press (US). https:\/\/doi.org\/10.17226\/25632"},{"key":"e_1_3_3_24_1","unstructured":"National Heart L. and Blood Institute [NHLBI]. (2024). What is sickle cell disease? Retrieved March 8 2025 from https:\/\/www.nhlbi.nih.gov\/health\/sickle-cell-disease#:\u223c:text=Sickle%20cell%20disease%20affects%20more and%208%20million%20people%20worldwide"},{"key":"e_1_3_3_25_1","unstructured":"NVivo. (2023). Lumivero (Version 14) [Computer software]. https:\/\/www.qsrinternational.com\/nvivo-qualitative-data-analysis-software\/home"},{"key":"e_1_3_3_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.30786"},{"key":"e_1_3_3_27_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781452204727.n4"},{"key":"e_1_3_3_28_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2024-205946"},{"key":"e_1_3_3_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.13019"},{"issue":"7","key":"e_1_3_3_30_1","article-title":"Longitudinal trend in emergency department reliance for pain among sickle cell disease patients in Wisconsin","volume":"41","author":"Singh A.","year":"2019","unstructured":"Singh A., Yan K., Brandow A. M., Panepinto J. A. (2019). Longitudinal trend in emergency department reliance for pain among sickle cell disease patients in Wisconsin. Journal of Pediatric Hematololgy & Oncology, 41(7), e438\u2013e442. https:\/\/doi.org\/10.1097\/mph.0000000000001533","journal-title":"Journal of Pediatric Hematololgy & Oncology"},{"key":"e_1_3_3_31_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_3_3_32_1","doi-asserted-by":"publisher","DOI":"10.1037\/cpp0000372"},{"issue":"3","key":"e_1_3_3_33_1","article-title":"Impact of race, socioeconomic status, and geography on healthcare outcomes for children with sickle cell disease in the United States: A scoping review","volume":"16","author":"Wahab S.","year":"2024","unstructured":"Wahab S., Kelly K., Klingler M., Pirovic A., Futch K., Rennie C., Durham D., Herber D., Gramling G., Price S., Costin J. M. (2024). Impact of race, socioeconomic status, and geography on healthcare outcomes for children with sickle cell disease in the United States: A scoping review. Cureus, 16(3), Article e56089. https:\/\/doi.org\/10.7759\/cureus.56089","journal-title":"Cureus"},{"key":"e_1_3_3_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2007.02244.x"},{"key":"e_1_3_3_35_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2023-190320"}],"container-title":["Journal of Pediatric Hematology\/Oncology Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/27527530261424176","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/27527530261424176","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/27527530261424176","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,29]],"date-time":"2026-08-29T13:18:26Z","timestamp":1788009506000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/27527530261424176"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5,5]]},"references-count":34,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,7]]}},"alternative-id":["10.1177\/27527530261424176"],"URL":"https:\/\/doi.org\/10.1177\/27527530261424176","relation":{},"ISSN":["2752-7530","2752-7549"],"issn-type":[{"value":"2752-7530","type":"print"},{"value":"2752-7549","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5,5]]}}}