Department of Public Health, Ben Gurion University of the Negev, Be'er Sheva, Israel.
Psychooncology. 2013 Nov;22(11):2436-44. doi: 10.1002/pon.3305. Epub 2013 Jun 5.
This prospective and longitudinal study was designed to further our understanding of parental hope when a child is being treated for a malignancy resistant to treatment over three time points during the first year after diagnosis using a qualitative approach to inquiry.
We prospectively recruited parents of pediatric cancer patients with a poor prognosis who were treated in the Hematology/Oncology Program at a large children's hospital for this longitudinal grounded theory study. Parents were interviewed at three time points: within 3 months of the initial diagnosis, at 6 months, and at 9 months. Data collection and analysis took place concurrently using line-by-line coding. Constant comparison was used to examine relationships within and across codes and categories.
Two overarching categories defining hope as a positive inner source were found across time, but their frequency varied depending on how well the child was doing and disease progression: future-oriented hope and present-oriented hope. Under future-oriented hope, we identified the following: hope for a cure and treatment success, hope for the child's future, hope for a miracle, and hope for more quality time with child. Under present-oriented hope, we identified hope for day-to-day/moment-to-moment, hope for no pain and suffering, and hope for no complications.
For parents of children with a diagnosis of cancer with a poor prognosis, hope is an internal resource that can be present and future focused. These views fluctuated over time in response to changes in the child's well-being and disease progression.
本前瞻性纵向研究旨在通过定性研究方法，在诊断后第一年的三个时间点上，进一步了解父母在孩子接受治疗但治疗效果不佳的情况下的希望，该研究对患有恶性肿瘤的儿科患者进行了研究。
我们前瞻性招募了在一家大型儿童医院血液科/肿瘤科接受治疗的预后不良的儿科癌症患者的父母，以进行这项纵向扎根理论研究。父母在三个时间点接受了访谈：初次诊断后 3 个月内、6 个月时和 9 个月时。数据收集和分析同时进行，采用逐行编码。常定比较用于检查代码和类别内部以及跨代码和类别的关系。
在整个时间范围内，我们发现了两个总体类别，将希望定义为积极的内在来源，但它们的频率因孩子的病情和疾病进展而异：面向未来的希望和面向现在的希望。在面向未来的希望中，我们确定了以下内容：对治愈和治疗成功的希望、对孩子未来的希望、对奇迹的希望以及对与孩子共度更多美好时光的希望。在面向现在的希望中，我们确定了对日常生活/每一刻的希望、对无痛苦和痛苦的希望以及对无并发症的希望。
对于被诊断为预后不良的癌症的儿童的父母来说，希望是一种可以关注现在和未来的内在资源。这些观点随着孩子健康状况和疾病进展的变化而随时间波动。
