Isaac Martinez, Elizabeth S Davis, Courtney E Wimberly, Lisa Towry, Emily E Johnston, Kyle M Walsh
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Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child.</p><p><strong>Conclusions: </strong>Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":"e27-e36"},"PeriodicalIF":3.2000,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights From Bereaved Families.\",\"authors\":\"Isaac Martinez, Elizabeth S Davis, Courtney E Wimberly, Lisa Towry, Emily E Johnston, Kyle M Walsh\",\"doi\":\"10.1016/j.jpainsymman.2024.09.001\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Context: </strong>Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. 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PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child.</p><p><strong>Conclusions: </strong>Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.</p>\",\"PeriodicalId\":16634,\"journal\":{\"name\":\"Journal of pain and symptom management\",\"volume\":\" \",\"pages\":\"e27-e36\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2025-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of pain and symptom management\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1016/j.jpainsymman.2024.09.001\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/9/11 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of pain and symptom management","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.jpainsymman.2024.09.001","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/9/11 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
摘要
背景:姑息治疗(PC)在美国取得了长足的发展,患者和护理人员的体验也得到了改善。然而,人们担心姑息治疗在儿科肿瘤中的利用率不高。了解家长对 PC 的态度对于提高 PC 的利用率至关重要:本研究旨在探讨失去亲人的父母对儿科肿瘤中 PC 的态度:本研究使用了 Alex's Lemonade Stand 的数据:我的儿童癌症丧亲之痛调查》中的数据。调查内容包括丧亲父母对 PC 的态度问题:调查包括 72 个丧亲家庭。父母在孩子去世 11 年后完成了调查。71%的案例涉及 PC。这些家庭更有可能下达了 "禁止复苏"(DNR)命令、制定了高级护理计划、提供了临终关怀、计划了死亡地点,而且他们的孩子更有可能在医院外死亡。尽管大多数家长(86%)都认为医生有义务向所有癌症患者告知 PC。PC转诊似乎比家长希望的时间要晚。缺乏 PC 参与的主要原因是医生未提供 PC 或患儿突然死亡:结论:家长的犹豫不决不应被视为参与 PC 的障碍。虽然家长们对 PC 的态度不一,但家属们接受 PC,希望尽早转诊,并认为提供 PC 是医生的义务。这些发现强调了及时转诊、加强教育和提高对 PC 服务的认识的必要性,以加强 PC 在儿科肿瘤学中的整合。
Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights From Bereaved Families.
Context: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC is crucial to improving PC utilization.
Objectives: This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology.
Methods: This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC.
Results: The survey included 72 bereaved families. Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child.
Conclusions: Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology.
期刊介绍:
The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.