Nanna Maria Hammer, Pernille Envold Bidstrup, Marianne Olsen, Helena Hansson, Maja Abitz, Hanne Bækgaard Larsen
{"title":"祖父母参与孙辈癌症患者家庭临终关怀的经历:定性二手数据分析。","authors":"Nanna Maria Hammer, Pernille Envold Bidstrup, Marianne Olsen, Helena Hansson, Maja Abitz, Hanne Bækgaard Larsen","doi":"10.1080/07481187.2024.2355252","DOIUrl":null,"url":null,"abstract":"<p><p>While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: \"Navigating complex and unclear roles to support the family\" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.</p>","PeriodicalId":11041,"journal":{"name":"Death Studies","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis.\",\"authors\":\"Nanna Maria Hammer, Pernille Envold Bidstrup, Marianne Olsen, Helena Hansson, Maja Abitz, Hanne Bækgaard Larsen\",\"doi\":\"10.1080/07481187.2024.2355252\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: \\\"Navigating complex and unclear roles to support the family\\\" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.</p>\",\"PeriodicalId\":11041,\"journal\":{\"name\":\"Death Studies\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2024-05-31\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Death Studies\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/07481187.2024.2355252\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PSYCHOLOGY, MULTIDISCIPLINARY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Death Studies","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/07481187.2024.2355252","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PSYCHOLOGY, MULTIDISCIPLINARY","Score":null,"Total":0}
The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis.
While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.
期刊介绍:
Now published ten times each year, this acclaimed journal provides refereed papers on significant research, scholarship, and practical approaches in the fast growing areas of bereavement and loss, grief therapy, death attitudes, suicide, and death education. It provides an international interdisciplinary forum in which a variety of professionals share results of research and practice, with the aim of better understanding the human encounter with death and assisting those who work with the dying and their families.