Girdwood Tyra C, Goralski Jennifer L, Ferris Maria E, Lynn Mary R, Dellon Elisabeth P, Kainz Kirsten, Toles Mark P
University of North Carolina at Chapel Hill, School of Nursing, 120 N Medical Dr, Chapel Hill, NC 27599, USA.
Duke University, School of Nursing, 307 Trent Dr, Durham, NC 27710, USA.
Health Care Transit. 2023 Jul 27;1:100011. doi: 10.1016/j.hctj.2023.100011. eCollection 2023.
Medical advances have increased the life expectancy of adolescents and young adults (AYA) with cystic fibrosis (CF) and importance of high-quality health care transitions (HCT) from pediatric-to-adult focused health care. The purpose of this study was to describe perceptions of HCT readiness among caregivers and AYA with CF during the COVID-19 pandemic.
Using a qualitative descriptive design, caregivers and AYA aged 12-21 years old were recruited from three large CF care centers across the eastern U.S. Data were collected using an online questionnaire with open ended and closed ended questions. Survey topics were: perceptions of HCT readiness, actions to prepare for HCT, and the impact of COVID-19. Results were interpreted using an adapted framework of the Health Care Transition Research Consortium Model and qualitative content analysis.
The sample included 73 caregivers (62 mothers) and 34 AYA (24 female, mean age 15.5 years). Three attributes of HCT readiness were identified from caregiver and AYA perceptions: (1) strong concerns that AYA lacked readiness to manage self-care needs in the future, (2) gaps in resources hindered ongoing efforts to enhance transition readiness, and (3) COVID changes created new barriers and facilitators to health care transition readiness.
Caregivers and AYA felt they lacked readiness for HCT, they worried about worsening outcomes in adult-focused care, and they were challenged by the onset of the COVID-19 pandemic.
These findings provide a solid description of perceived transition readiness during a pandemic that may enhance transitional care design.
医学进步提高了患有囊性纤维化（CF）的青少年和青年（AYA）的预期寿命，以及从儿科到成人医疗保健的高质量医疗保健过渡（HCT）的重要性。本研究的目的是描述在新冠疫情期间，CF患者的护理人员和AYA对HCT准备情况的看法。
采用定性描述性设计，从美国东部三个大型CF护理中心招募了12至21岁的护理人员和AYA。使用包含开放式和封闭式问题的在线问卷收集数据。调查主题包括：对HCT准备情况的看法、为HCT做准备的行动以及新冠疫情的影响。结果采用医疗保健过渡研究联盟模型的改编框架和定性内容分析进行解释。
样本包括73名护理人员（62名母亲）和34名AYA（24名女性，平均年龄15.5岁）。从护理人员和AYA的看法中确定了HCT准备情况的三个属性：（1）强烈担心AYA未来缺乏管理自我护理需求的准备；（2）资源差距阻碍了提高过渡准备的持续努力；（3）新冠疫情带来的变化为医疗保健过渡准备制造了新的障碍和促进因素。
护理人员和AYA觉得他们对HCT缺乏准备，担心在成人医疗保健中结果会恶化，并且受到新冠疫情爆发的挑战。
这些发现对疫情期间感知到的过渡准备情况进行了扎实的描述，可能会加强过渡性护理设计。
