Pain Research, Informatics, Multi-Morbidities, and Education (PRIME) Center, School of Nursing, Yale University (N.O., M.T.K., S.L.F.), Orange, Connecticut, USA.
Division of Quality of Life and Pediatric Palliative (J.N.B.), Stanford Medicine Children's Health, Palo Alto, California, USA.
J Pain Symptom Manage. 2024 Nov;68(5):516-524.e1. doi: 10.1016/j.jpainsymman.2024.08.003. Epub 2024 Aug 12.
Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death.
To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care.
We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations.
Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association.
Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.
在儿童癌症患者中,家长与临床医生的沟通对于高质量的临终关怀至关重要。然而,目前尚不清楚医患沟通如何影响患儿死亡后最初两年内家长的体验。
探讨患儿因癌症死亡后父母的沟通与长期悲痛之间的关系,并探索临终关怀准备的中介作用。
我们对过去 6-24 个月内因癌症死亡的患儿的家长进行了横断面调查,分析了数据。我们使用多元线性回归来检验沟通变量与长期悲痛症状之间的关系。我们还检验了临终关怀准备如何调解这些关联。
在 N = 124 名父母中,平均年龄为 46 岁,82%为白人,64%为母亲。PG-13 总分平均为 32.7 ± 10.6(范围 11-55,得分越高表示症状越严重)。大多数家长表示与临床医生的沟通“非常好/优秀”(80%),对预后信息的了解程度“足够”(64%),对医生的信任度“高”(90%)。近 39%的家长表示对孩子的临终关怀“一点准备都没有”。与希望获得更多预后信息的家长相比,认为预后信息“足够”的家长的 PG-13 总分明显较低(36.4 ± 10.8 与 30.5 ± 10.1,F = 9.26,P = 0.003)。临终关怀准备完全介导了这种关联。
早期丧亲的父母报告严重的长期悲痛症状。侧重于提供足够的预后信息和改善临终关怀准备的干预措施可能会减轻父母在丧亲后的最初两年中的长期悲痛症状。