School of Nursing, University of Pennsylvania.
The Children's Hospital of Philadelphia.
J Fam Psychol. 2018 Apr;32(3):321-332. doi: 10.1037/fam0000352.
Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record
目前对于家庭如何系统地照顾青少年和年轻成年期（AYA）的儿童脑肿瘤幸存者知之甚少，这些幸存者往往在成年后仍然依赖家庭。本研究的主要目的是为 AYA 幸存者制定家庭管理（FM）模式的分类法。次要目的是将其与以前描述的儿童慢性健康状况的 FM 模式进行比较，并使用定量和定性数据验证这些模式。本研究采用序列、混合方法设计，以家庭管理风格框架为指导，从 186 名母亲（主要照顾者）和 134 名 AYA 幸存者中收集定量数据。使用家庭管理量表的数据进行聚类分析，确定 FM 模式（以家庭为中心；以家庭为中心的程度稍高；以疾病为中心的程度稍高；以疾病为中心）。FM 模式与患有慢性健康身体状况的儿童的模式相似，并且与母亲的生活质量、幸存者的生活质量（与健康相关的生活质量[自我和母亲代理报告]）、癌症相关变量（治疗强度、医疗后期影响）以及家庭功能呈理论上有意义的显著相关。显著的人口统计学特征包括私人保险和 AYA 幸存者的学业或就业参与。从较大样本中 45 名母亲的访谈中进行的定性分析为 FM 模式提供了额外的支持，并对其进行了详细的描述。FM 模式的确定通过将数据聚合到基于概念的分类法中，从而考虑到疾病、家庭和疾病管理的复杂交叉，推动了家庭护理科学的发展。（PsycINFO 数据库记录
