Children's National Medical Center, Washington, DC 20010, USA.
Qual Health Res. 2011 Mar;21(3):349-64. doi: 10.1177/1049732310385823. Epub 2010 Oct 27.
Few researchers have studied how parents from diverse family structures cope with childhood chronic illness. We designed this study to discern the childhood cancer treatment decision-making (TDM) process in these families. Using grounded theory, we interviewed 15 custodial parents, nonresidential parents, and stepparents who had previously made a major treatment decision for their children with cancer. "Moving to place" was the central psychosocial process by which parents negotiated involvement in TDM. Parents moved toward or were moved away from involvement based on parent position in the family (custodial, nonresidential, and stepparent), prediagnosis family dynamics, and time since diagnosis. Parents used the actions of stepping up, stepping back, being pushed, and stepping away to respond to the need for TDM. Parents faced additional stressors because of their family situations, which affected the TDM process. Findings from this study provide important insight into diverse families and their unique parental TDM experiences.
很少有研究人员研究过来自不同家庭结构的父母如何应对儿童慢性病。我们设计这项研究是为了了解这些家庭中的儿童癌症治疗决策（TDM）过程。我们采用扎根理论，对 15 名监护父母、非居住父母和继父或继母进行了采访，他们之前曾为患有癌症的孩子做出过重大治疗决定。“搬到地方”是父母协商参与 TDM 的核心心理社会过程。父母是否参与 TDM 取决于他们在家庭中的地位（监护、非居住和继父或继母）、诊断前的家庭动态以及诊断后的时间。父母通过采取主动、退缩、被推动和离开的行动来应对 TDM 的需求。父母因家庭情况而面临额外的压力源，这影响了 TDM 过程。这项研究的结果为不同家庭及其独特的父母 TDM 经验提供了重要的见解。
