Charity I Oyedeji, John J Strouse, Rita Masese, Nathan Gray, Tolu O Oyesanya
{"title":"\"Death is as Much Part of Life as Living\": Attitudes and Experiences Preparing for Death from Older Adults with Sickle Cell Disease.","authors":"Charity I Oyedeji, John J Strouse, Rita Masese, Nathan Gray, Tolu O Oyesanya","doi":"10.1177/00302228221116513","DOIUrl":null,"url":null,"abstract":"<p><p>The life-limiting and unpredictable nature of sickle cell disease (SCD) is well-established, yet there is limited literature on end-of-life planning. The purpose of this study was to describe perspectives about preparing for death for older adults with SCD. We enrolled 19 older adults with SCD (age ≥ 50 years) into this qualitative descriptive study. Theme 1 was \"anticipation of early death,\" with sub-themes: (a) informed of early death and (b) making plans for death. Theme 2 was \"near death experiences.\" Theme 3 was \"differences in level of comfort with death\" with subthemes: (a) death as a part of life and (b) differences in level of comfort discussing death. Theme 4 was \"influence of spirituality\" with subthemes: (a) God controls the timing of death and (b) belief in the afterlife. These results will inform interventions to improve the quality of patient-provider communication to provide goal-concordant end-of-life care for adults with SCD.</p>","PeriodicalId":74338,"journal":{"name":"Omega","volume":" ","pages":"1056-1077"},"PeriodicalIF":0.0000,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10082645/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Omega","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/00302228221116513","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/7/20 0:00:00","PubModel":"Epub","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
The life-limiting and unpredictable nature of sickle cell disease (SCD) is well-established, yet there is limited literature on end-of-life planning. The purpose of this study was to describe perspectives about preparing for death for older adults with SCD. We enrolled 19 older adults with SCD (age ≥ 50 years) into this qualitative descriptive study. Theme 1 was "anticipation of early death," with sub-themes: (a) informed of early death and (b) making plans for death. Theme 2 was "near death experiences." Theme 3 was "differences in level of comfort with death" with subthemes: (a) death as a part of life and (b) differences in level of comfort discussing death. Theme 4 was "influence of spirituality" with subthemes: (a) God controls the timing of death and (b) belief in the afterlife. These results will inform interventions to improve the quality of patient-provider communication to provide goal-concordant end-of-life care for adults with SCD.
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