Author Affiliations: Division of Behavioral Medicine and Clinical Psychology, Center for the Promotion of Adherence and Self-Management, Cincinnati Children's Hospital Medical Center (Drs Morrison and Pai and Ms Woebkenberg); College of Nursing, University of Cincinnati (Drs Morrison and Martsolf and Mss Wehrkamp, Ramirez, and Tehan); Bone Marrow Transplantation and Immune Deficiency (Mss Borich and Coleman) and Patient and Family Wellness Center (Dr Pai), Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center; and Department of Pediatrics, University of Cincinnati School of Medicine (Dr Pai), Ohio.
Cancer Nurs. 2018 Sep/Oct;41(5):347-358. doi: 10.1097/NCC.0000000000000566.
Stem cell transplant (SCT) is a major life event that can have long-term psychosocial consequences for the entire family. It is unknown the degree to which the psychosocial characteristics associated with SCT influence self-management behaviors and health outcomes in adolescents and young adults (AYAs).
The study had the following aims: (1) to describe how AYAs manage their care regimen post-SCT and (2) to explore self-management facilitators, barriers, processes, and behaviors within individual, family, community, and healthcare system domains.
INTERVENTIONS/METHODS: A grounded theory study was conducted to understand the process AYAs use to manage their care after SCT. Semistructured individual interviews were conducted, digitally recorded, and transcribed verbatim. Data were coded to consensus and analyzed using constant comparison methods.
A sample of 17 AYAs (13-25 years old at transplant) and 13 caregivers (dyads) participated in the study. Initially, the participants experienced a tornado of activities, information, and emotions. Support from family, friends, and healthcare providers empowered families to manage their care, maintain a positive attitude, and approach a "normal" life.
Monotony, managing symptoms, and isolation were the hardest obstacles for AYAs throughout the process. Families discussed managing their care activities by developing routines that got easier with time.
Nurses play an instrumental role in AYA self-management practices by providing information, education, and social support. Psychosocial issues were prominent in the self-management process and should be addressed in future research and interventions with AYAs and caregivers.
干细胞移植（SCT）是一个重大的生活事件，可能会对整个家庭产生长期的心理社会后果。目前尚不清楚与 SCT 相关的心理社会特征在多大程度上会影响青少年和年轻人（AYAs）的自我管理行为和健康结果。
本研究的目的如下：（1）描述 AYA 在 SCT 后如何管理他们的护理方案；（2）探索个体、家庭、社区和医疗保健系统领域内自我管理的促进因素、障碍、过程和行为。
干预/方法：本研究采用扎根理论来理解 AYA 在 SCT 后管理自身护理的过程。进行了半结构化的个体访谈，将访谈内容进行数字记录并逐字转录。对数据进行共识编码，并使用恒定性比较方法进行分析。
研究纳入了 17 名 AYA（移植时年龄在 13-25 岁）和 13 名照顾者（双生子）。最初，参与者经历了活动、信息和情绪的旋风。来自家庭、朋友和医疗保健提供者的支持使家庭能够管理他们的护理，保持积极的态度，并过“正常”的生活。
单调、管理症状和孤立是 AYA 在整个过程中最困难的障碍。家庭通过制定随着时间推移变得更容易的常规来讨论管理他们的护理活动。
护士通过提供信息、教育和社会支持，在 AYA 的自我管理实践中发挥了重要作用。心理社会问题在自我管理过程中很突出，应在未来针对 AYA 和照顾者的研究和干预中予以关注。
