Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH.
Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD.
Palliat Support Care. 2021 Dec;19(6):715-722. doi: 10.1017/S1478951521000067.
Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.
Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; = 102) with an average age of 49.15 (SD 8.03) years. Deceased children were of an average age of 12.42 years (SD 6.01) and nearly 90% of children died within 5 years of diagnosis.
Most caregivers spoke with their child about their prognosis (61.8%; 131) and death (66.7%; = 99). Half of children (48%; = 125) asked about death, particularly older children (51.9% ≥12 years; = 0.03). Asking about dying was related to having conversations about prognosis ( ≤ 0.001) and death ≤ 0.001). Most caregivers (71.8%; = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; = 16) or to be present while caregivers spoke to the child (19.8%; = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.
Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.
鼓励临床医生和家长与癌症儿童进行坦诚的临终沟通，但该领域的研究仍然有限。我们研究了癌症儿童丧亲护理者的家庭沟通和首选的支持形式。
通过一个封闭的社交媒体群组招募丧亲护理者，让他们填写一份在线调查，回顾他们与孩子临终时的沟通情况，并对医疗保健提供者提供沟通支持的偏好进行评估。131 名参与者的样本主要为女性（77.9%；=102），平均年龄为 49.15（SD 8.03）岁。去世的孩子平均年龄为 12.42 岁（SD 6.01），近 90%的孩子在确诊后 5 年内去世。
大多数护理者与孩子讨论过预后（61.8%；=131）和死亡（66.7%；=99）。一半的孩子（48%；=125）询问过死亡，尤其是年龄较大的孩子（51.9%≥12 岁；=0.03）。询问死亡与讨论预后（≤0.001）和死亡（≤0.001）有关。大多数护理者（71.8%；=94）希望得到支持，以便与孩子交谈。希望提供者直接与孩子交谈的护理者较少（12.2%；=16），或在护理者与孩子交谈时在场的护理者较少（19.8%；=26）。对关于提供者支持偏好的开放性问题的内容分析中出现了几个主题。
大多数护理者讨论了与临终相关的问题，无论人口统计学或医疗因素如何。定性主题深入了解了家庭希望获得的支持，以帮助进行这些困难的对话。
