Mirzaian Christine B, Smith Rowan, Betz Cecily L
Department of Pediatrics, University of Southern California Keck School of Medicine, 4650 Sunset Blvd. Mailstop 53, Los Angeles, CA 90027, USA.
University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles, 4650 Sunset Blvd. Mailstop 53, Los Angeles, CA 90027, USA.
Children (Basel). 2025 Jul 4;12(7):886. doi: 10.3390/children12070886.
As national and international reports reveal, significant health care transition (HCT) service disparities exist for youth and young adults with intellectual and developmental disabilities (YYAs with IDD). The development of the HCT model necessitates informed perspectives from a broad constituency, including consumers and families. Parents' retrospective perspectives of their sons' or daughters' HCT experiences are presented to enlarge the understanding of the service need.
Eleven parents were recruited virtually from parent support/disability advocate groups via an email distribution list of the Children's Hospital Los Angeles University Center for Excellence in Developmental Disabilities. Parents who consented to participate were interviewed by phone using an interview guide with 11 open-ended items. Three questions focused on the barriers and facilitators associated with the HCT experience are reported.
Four major themes were generated from the analysis of data gathered from parents pertaining to their sons' or daughters' health care transition experiences, focusing on the transfer of care. Two major themes were related to HCT barriers-Pediatric Care Contrasted with Adult-Focused Care and Transfer of Care Barriers-and two were related to HCT facilitators-Transfer of Care Facilitators and Transfer of Care Recommendations. Each of the major themes included subthemes.
Parents openly shared their sons' or daughters' HCT experiences, which illuminated the scope of their challenges and the assistance received. These insights provide rich descriptions of the barriers they and their adult children faced as they proceeded with navigating new systems of health care. The reported data find support in other previously conducted studies.
正如国内和国际报告所揭示的，患有智力和发育障碍的青少年和青年（患有智力和发育障碍的YYA）在医疗保健过渡（HCT）服务方面存在显著差异。HCT模式的发展需要包括消费者和家庭在内的广泛群体提供明智的观点。本文呈现了父母对其子女HCT经历的回顾性看法，以加深对服务需求的理解。
通过洛杉矶儿童医院大学发育障碍卓越中心的电子邮件分发列表，从家长支持/残疾倡导团体中虚拟招募了11名家长。同意参与的家长通过电话接受访谈，访谈使用了包含11个开放式问题的访谈指南。本文报告了三个聚焦于与HCT经历相关的障碍和促进因素的问题。
对家长提供的有关其子女医疗保健过渡经历的数据进行分析，围绕护理转移产生了四个主要主题。两个主要主题与HCT障碍相关——儿科护理与以成人为重点的护理对比以及护理转移障碍，另外两个与HCT促进因素相关——护理转移促进因素和护理转移建议。每个主要主题都包含子主题。
家长们公开分享了他们子女的HCT经历，这揭示了他们所面临的挑战范围以及所获得的帮助。这些见解丰富地描述了他们及其成年子女在进入新的医疗保健系统时所面临的障碍。报告的数据在其他先前进行的研究中得到了支持。
