Division of Pediatric Hematology/Oncology, Seattle Children's Hospital, Seattle, Washington, USA.
J Palliat Med. 2013 Jun;16(6):645-52. doi: 10.1089/jpm.2012.0494. Epub 2013 May 6.
Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer.
The aims of this study were (1) to review the resilience literature in pediatric cancer settings; (2) to qualitatively ascertain caregiver-reported perceptions of resilience; and (3) to develop an integrative model of fixed and mutable factors of resilience among family members of children with cancer, with the goal of enabling better study and promotion of resilience among pediatric cancer families.
The study entailed qualitative analysis of small group interviews with eighteen bereaved parents and family members of children with cancer treated at Seattle Children's Hospital. Small-group interviews were conducted with members of each bereaved family. Participant statements were coded for thematic analysis. An integrative, comprehensive framework was then developed.
Caregivers' personal appraisals of the cancer experience and their child's legacy shape their definitions of resilience. Described factors of resilience include baseline characteristics (i.e., inherent traits, prior expectations of cancer), processes that evolve over time (i.e., coping strategies, social support, provider interactions), and psychosocial outcomes (i.e., post-traumatic growth and lack of psychological distress). These elements were used to develop a testable model of resilience among family members of children with cancer.
Resilience is a complex construct that may be modifiable. Once validated, the proposed framework will not only serve as a model for clinicians, but may also facilitate the development of interventions aimed at promoting resilience in family members of children with cancer.
促进韧性是心理社会关怀的一个方面，影响着患者和整个家庭的健康。在儿科癌症期间和之后，如何定义或促进韧性方面几乎没有共识。
本研究的目的是：(1)回顾儿科癌症环境中的韧性文献；(2)从定性上确定照顾者报告的韧性感知；(3)为癌症儿童的家庭成员制定一个韧性的固定和可改变因素的综合模型，旨在更好地研究和促进儿科癌症家庭的韧性。
本研究包括对十八名丧亲父母和西雅图儿童医院癌症患儿的家庭成员进行小组访谈的定性分析。对每个丧亲家庭的成员进行小组访谈。对参与者的陈述进行编码，进行主题分析。然后制定了一个综合的、全面的框架。
照顾者对癌症经历和他们孩子的遗产的个人评估塑造了他们对韧性的定义。韧性的描述性因素包括基线特征(即固有特征、对癌症的先前期望)、随着时间的推移而演变的过程(即应对策略、社会支持、提供者互动)和心理社会结果(即创伤后成长和缺乏心理困扰)。这些要素被用于开发癌症患儿家庭成员韧性的可检验模型。
韧性是一个复杂的概念，可能是可以改变的。一旦得到验证，所提出的框架不仅将作为临床医生的模型，而且还可能促进旨在促进癌症患儿家庭成员韧性的干预措施的发展。
