Martinez Isaac, Davis Elizabeth S, Wimberly Courtney E, Towry Lisa, Johnston Emily E, Walsh Kyle M
Institute for Cancer Outcomes and Survivorship (I.M., E.D., E.J.), University of Alabama at Birmingham, Birmingham, Alabama, USA.
Institute for Cancer Outcomes and Survivorship (I.M., E.D., E.J.), University of Alabama at Birmingham, Birmingham, Alabama, USA; Department of Surgery (E.D.), Boston University, Boston, Massachusetts, USA.
J Pain Symptom Manage. 2025 Jan;69(1):e27-e36. doi: 10.1016/j.jpainsymman.2024.09.001. Epub 2024 Sep 11.
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.
This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology.
This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC.
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.
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.
姑息治疗（PC）在美国已显著发展，且与改善患者及照料者体验相关。然而，有人担心PC在儿科肿瘤学中未得到充分利用。了解父母对PC的态度对于提高PC的利用率至关重要。
本研究旨在探讨儿科肿瘤学中丧亲父母对PC的态度。
本研究使用了亚历克斯柠檬水摊儿童癌症丧亲调查的数据。该调查包括关于丧亲父母对PC态度的问题。
该调查纳入了72个丧亲家庭。父母在孩子去世后的中位数11年完成了调查。PC参与了71%的病例。这些家庭更有可能有不进行心肺复苏（DNR）医嘱、一份高级护理计划、临终关怀、一个计划好的死亡地点，并且孩子在医院外死亡。尽管大多数父母（86%）同意告知所有癌症患者有关PC是医生的义务，但PC转诊似乎比父母期望的时间要晚。PC未参与主要是因为未提供PC或孩子突然死亡。
不应将父母的犹豫视为PC参与的障碍。尽管父母对PC态度不一，但家庭接受PC，希望更早转诊，并认为提供PC是医生的义务。这些发现凸显了及时进行PC转诊、改善教育以及提高对PC服务的认识以加强PC在儿科肿瘤学中的整合的必要性。
