Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease.
Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease.
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DOI：
10.1097/nnr.0000000000000550
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发表时间：
2022-01-01
期刊：
影响因子：
2.5
通讯作者：
Popejoy LL
中科院分区：
文献类型：
--
作者：
Varty M;Speller-Brown B;Wakefield BJ;Ravert RD;Kelly KP;Popejoy LL
过渡到成人卫生保健是青少年和年轻人（AYAs）与镰状细胞病的关键时刻，过渡的准备是重要的，以减少与过渡相关的发病率和死亡率风险。我们探讨了决策参与，自我效能，医疗保健责任，并在过渡前与镰状细胞病AYA的整体过渡准备之间的关系。这项横断面相关性研究是在2019年10月至2020年2月期间，对50名接受大型综合性镰状细胞诊所护理的家庭成员进行的。参与者完成了决策参与量表、镰状细胞自我效能量表和过渡准备问卷。多元线性回归被用来评估决策参与，自我效能，医疗保健责任，并在AYA与镰状细胞病过渡到成人医疗保健的整体过渡准备之间的关系。而更高水平的表达行为，如分享意见和想法的决策，与更高水平的AYA医疗保健责任，这些行为与整体过渡准备的感觉呈负相关。自我效能与整体过渡准备呈正相关，但与AYA医疗保健责任呈负相关。父母参与与AYA医疗保健责任和整体过渡准备呈负相关。虽然增加AYAs的决策参与可能会提高AYAs的医疗保健责任，但它可能不会减少对过渡到成人医疗保健的准备不足的障碍。促进AYA积极参与有关疾病管理的决策，提高自我效能，安全地减少父母的参与可能会积极影响他们的信心和自我管理的能力。
Transition to adult health care is a critical time for adolescents and young adults (AYAs) with sickle cell disease, and preparation for transition is important to reducing morbidity and mortality risks associated with transition. We explored the relationships between decision-making involvement, self-efficacy, health care responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition. This cross-sectional, correlational study was conducted with 50 family caregivers–AYAs dyads receiving care from a large comprehensive sickle cell clinic between October 2019 and February 2020. Participants completed the Decision-Making Involvement Scale, the Sickle Cell Self-Efficacy Scale, and the Readiness to Transition Questionnaire. Multiple linear regression was used to assess the relationships between decision-making involvement, self-efficacy, health care responsibility, and overall transition readiness in AYAs with sickle cell disease prior to transition to adult health care. Whereas higher levels of expressive behaviors, such as sharing opinions and ideas in decision-making, were associated with higher levels of AYA health care responsibility, those behaviors were inversely associated with feelings of overall transition readiness. Self-efficacy was positively associated with overall transition readiness but inversely related to AYA health care responsibility. Parent involvement was negatively associated with AYA health care responsibility and overall transition readiness. While increasing AYAs’ decision-making involvement may improve AYAs’ health care responsibility, it may not reduce barriers of feeling unprepared for the transition to adult health care. Facilitating active AYA involvement in decision-making regarding disease management, increasing self-efficacy, and safely reducing parent involvement may positively influence their confidence and capacity for self-management.