Transition Support Service, Department of Adolescent Medicine, The Royal Children's Hospital, Melbourne, VIC, Australia.
Department of Paediatrics, University of Melbourne, Melbourne, VIC, Australia.
Dev Med Child Neurol. 2021 May;63(5):560-565. doi: 10.1111/dmcn.14766. Epub 2020 Dec 17.
First, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co-existing mental health disorders (often termed 'dual disability'), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities.
Carers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care.
Paediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs.
This study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care.
Adolescents with co-occurring disabilities require a collaborative health and disability service interface. Fearless, Tearless Transition is a new approach to transitioning adolescents with dual disabilities from paediatric to adult care. Carers of adolescents with dual disabilities require support navigating and negotiating services. Engaging general practitioners and paediatricians in shared care early during the transition process is essential.
首先，从父母和照顾者、患有智力残疾和/或自闭症谱系障碍以及并存精神健康障碍（通常称为“双重残疾”）的青少年以及为这一群体提供服务的人员的角度了解实现有效过渡的障碍和所需的支持。其次，制定知情的共同照护模式，以改善双重残疾青少年的过渡。
对照顾者和一名双重残疾的年轻成年人进行了过渡护理体验调查。还采访了其他主要利益攸关方，包括儿科医生、全科医生和政策制定者。这些数据为护理模式提供了信息。
儿科医生和全科医生报告说，在建立工作关系以促进顺利过渡方面存在困难，照顾者报告说缺乏具有足够专业知识的常规全科医生来照顾双重残疾者。通过专门的过渡经理开发并启动了儿科医生和全科医生之间的共同照护过程，该经理协助护理协调和服务联系。还引入了标准化临床评估工具来确定患者和照顾者的支持需求。
这项研究强调了通过早期过渡计划、评估患者和照顾者需求的一致方法以及共同照护来改善双重残疾青少年及其照顾者过渡结果的潜力。
患有共病残疾的青少年需要协作的健康和残疾服务接口。无畏无泪过渡是一种将双重残疾青少年从儿科过渡到成人护理的新方法。双重残疾青少年的照顾者需要支持来导航和协商服务。在过渡过程中尽早让全科医生和儿科医生参与共同照护至关重要。
