Jacqueline M McGinley, Christina N Marsack-Topolewski
{"title":"A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities.","authors":"Jacqueline M McGinley, Christina N Marsack-Topolewski","doi":"10.1177/23333936221087626","DOIUrl":null,"url":null,"abstract":"<p><p>Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end.</p>","PeriodicalId":45940,"journal":{"name":"Global Qualitative Nursing Research","volume":null,"pages":null},"PeriodicalIF":2.2000,"publicationDate":"2022-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9102126/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Global Qualitative Nursing Research","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23333936221087626","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2022/1/1 0:00:00","PubModel":"eCollection","JCR":"Q1","JCRName":"NURSING","Score":null,"Total":0}
引用次数: 0
Abstract
Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life's end.
期刊介绍:
Global Qualitative Nursing Research (GQNR) is a ground breaking, international, peer-reviewed, open-access journal focusing on qualitative research in fields relevant to nursing and other health professionals world-wide. The journal specializes in topics related to nursing practice, responses to health and illness, health promotion, and health care delivery. GQNR will publish research articles using qualitative methods and qualitatively-driven mixed-method designs as well as meta-syntheses and articles focused on methodological development. Special sections include Ethics, Methodological Development, Advancing Theory/Metasynthesis, Establishing Evidence, and Application to Practice.