期刊
PEDIATRIC BLOOD & CANCER
卷 69, 期 9, 页码 -出版社
WILEY
DOI: 10.1002/pbc.29792
关键词
coping strategies; death; decision-making; DIPG; lived experiences; regret
资金
- Starr International Foundation
- Universitat Zurich
In the case of Diffuse Intrinsic Pontine Glioma (DIPG), treatment decision-making for parents is relatively straightforward given the fatal nature of the tumor and lack of established treatment protocols. Many parents experienced psychological issues after their child's death, with coping strategies often differing between mothers and fathers.
Background Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. Procedure The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. Results For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to do something. Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. Conclusion The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据