Kayle Mariam, Tanabe Paula, Shah Nirmish R, Baker-Ward Lynne, Docherty Sharron L
Duke University School of Nursing, Durham, NC.
Duke University School of Nursing, Durham, NC; Duke University School of Medicine, Durham, NC.
J Pediatr Nurs. 2016 Nov-Dec;31(6):678-690. doi: 10.1016/j.pedn.2016.06.008. Epub 2016 Jul 21.
This study explored the challenges faced by adolescents with sickle cell disease (SCD) and their parents and the work they engage in to progressively shift from parent management to independent adolescent self-management.
A qualitative descriptive focus-group design with semi-structured interviews was used with adolescents (11-18 years) with SCD (HbSS genotype) and their parents/primary caregivers. Interviews were analyzed using content analysis.
Two adolescent focus groups, with a total of 14 adolescents, and two parent focus groups, with a total of 15 parents, described adaptive challenges. Adolescents' adaptive challenges included mastering complex symptom management, communicating about SCD and symptoms, and maintaining control. Parents' adaptive challenges included giving over the complex management, communicating the management with the adolescent, balancing protection against risk with fostering independence, changing a comfortable rhythm, and releasing the adolescent into an "SCD-naive" world. Adolescents' adaptive work included pushing back at parents, defaulting back to parental care, stepping up with time, learning how SCD affects them, and educating friends about SCD. Parents' adaptive work included engaging the adolescent in open dialogue and co-managing with the adolescent.
Shifting management responsibility from parents to adolescents imposes adaptive challenges for both. Future research is needed to develop and test interventions that improve adaptive capacity in adolescents and parents.
Health care providers need to assess the parent-child relationship and their progress in shifting the management responsibility, facilitate discussions to arrive at a shared understanding of the challenges, and collaborate on adaptive work to address these challenges.
本研究探讨了镰状细胞病（SCD）青少年及其父母所面临的挑战，以及他们为逐步从父母管理过渡到青少年自主管理而开展的工作。
采用定性描述性焦点小组设计并进行半结构化访谈，研究对象为患有SCD（HbSS基因型）的青少年（11 - 18岁）及其父母/主要照顾者。访谈采用内容分析法进行分析。
两个青少年焦点小组，共14名青少年，以及两个父母焦点小组，共15名父母，描述了适应性挑战。青少年的适应性挑战包括掌握复杂的症状管理、就SCD及症状进行沟通以及保持控制。父母的适应性挑战包括交出复杂的管理工作、与青少年沟通管理事宜、在防范风险与培养独立性之间取得平衡、改变舒适的节奏以及让青少年进入一个“对SCD缺乏了解”的世界。青少年的适应性工作包括反抗父母、回归父母照顾、随着时间推移承担起责任、了解SCD如何影响自己以及向朋友介绍SCD。父母的适应性工作包括与青少年进行开放对话并共同管理。
将管理责任从父母转移到青少年身上，对双方都带来了适应性挑战。未来需要开展研究以开发和测试能够提高青少年和父母适应能力的干预措施。
医疗保健提供者需要评估亲子关系以及他们在转移管理责任方面的进展，促进讨论以就挑战达成共同理解，并合作开展适应性工作以应对这些挑战。
