Anikputa Benedicta C, Horner Sharon D
The University of Texas at Austin School of Nursing, USA.
Health Care Transit. 2023 Jul 3;1:100007. doi: 10.1016/j.hctj.2023.100007. eCollection 2023.
As children with special healthcare needs (SHCN) mature, they will transition from pediatric to adult healthcare providers. Close to 80% of adolescents with SHCN reported not receiving services necessary for transition to adult health care. The purpose of this study was to examine the perceptions of the transition experience of Adolescents and Young Adults (AYA) and their parents. Participants were diagnosed with either inflammatory bowel disease or a congenital heart condition.
A qualitative descriptive study was conducted with participants recruited from specialty pediatric care clinics that served patients with inflammatory bowel disease and congenital heart conditions. Study procedures (recruitment, consent, interview guide) were approved by the clinic staff, the hospital steering committee, and the University IRB. Interviews with AYA and with parents were conducted separately, transcribed, and then coded to identify themes.
Interviews were completed with 8 AYA and 8 parent dyads. The identified themes were Transfer of Care, Mastery, and Support. The Transfer of Care theme reflected participants' worries about moving from their pediatric provider to the new adult provider. The Mastery theme revealed participants lacked confidence in their self-management skills. In the Support theme, participants wanted to be prepared and familiar with the transition process and to become comfortable in the new adult world.
Recommendations shared with clinic providers were to start conversations that directly addressed the transition process early, to provide information and to encourage the AYA to ask questions. In addition, the clinics could encourage AYA to start being responsible for the routine clinic visit paperwork with guidance from the parent.
随着有特殊医疗需求的儿童（SHCN）逐渐长大，他们将从儿科医疗服务提供者过渡到成人医疗服务提供者。近80%有特殊医疗需求的青少年表示没有获得向成人医疗保健过渡所需的服务。本研究的目的是调查青少年和青年（AYA）及其父母对过渡经历的看法。参与者被诊断患有炎症性肠病或先天性心脏病。
采用定性描述性研究，从为炎症性肠病和先天性心脏病患者提供服务的专科儿科诊所招募参与者。研究程序（招募、同意、访谈指南）得到了诊所工作人员、医院指导委员会和大学机构审查委员会的批准。分别对青少年和父母进行访谈，转录后进行编码以确定主题。
完成了对8对青少年和父母的访谈。确定的主题是护理转移、掌握和支持。护理转移主题反映了参与者对从儿科医疗服务提供者转向新的成人医疗服务提供者的担忧。掌握主题表明参与者对自我管理技能缺乏信心。在支持主题中，表示希望为过渡过程做好准备并熟悉该过程，并在新的成人世界中感到自在。
与诊所提供者分享的建议是尽早开始直接讨论过渡过程，提供信息并鼓励青少年提问。此外，诊所可以鼓励青少年在父母的指导下开始负责常规诊所就诊的文书工作。
