Kearney Josie, Bosyj Catherine, Rombos Victoria, Curran Alicia Brewer, Clark Brenda, Cornell Wendy, Mah Shannon, Mahurin Melissa, Piroddi Nicholas, Sohl Kristin, Zwaigenbaum Lonnie, Penner Melanie
Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
Michael G. Degroote School of Medicine, Master University, Hamilton, ON, Canada.
J Autism Dev Disord. 2024 Oct 23. doi: 10.1007/s10803-024-06597-8.
Although autism is highly prevalent, no single care center has enough patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research. The Autism Care Network (ACNet) is a learning health network (LHN) dedicated to developing the most effective approach to care for autistic children and adolescents through integrating clinical and research data. Given that most autistic patients receive care in the community, expanding ACNet to include community providers is essential to improve autism care. Our objectives were to: (1) understand the current data collection practices, learning needs, capacity, and overall interest of community clinicians in participating in an autism LHN; (2) identify their perspectives on participating in a LHN and ways in which their engagement and interest can be cultivated. Participants were purposively sampled from community physicians who participated in ASD-focused educational programming. In-depth semi-structured interviews were conducted. Analysis of 29 participant interviews yielded five primary themes: Navigating Administrative Challenges, Improving Data Collection Practices, Increasing Provider Confidence and Competence, Breaking Down Silos, and System and Societal Barriers to Achieving Best Practices. This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of ASD care provision in the community. Overall, these findings suggest that LHNs have the potential to address several of the issues in community autism care highlighted by community providers.
尽管自闭症非常普遍，但没有一个单一的护理中心有足够多的患者来产生关于最佳护理的可推广知识；这减缓了质量改进研究的步伐。自闭症护理网络（ACNet）是一个学习型健康网络（LHN），致力于通过整合临床和研究数据，开发出最有效的方法来照顾自闭症儿童和青少年。鉴于大多数自闭症患者在社区接受护理，将ACNet扩展到包括社区提供者对于改善自闭症护理至关重要。我们的目标是：（1）了解社区临床医生参与自闭症学习型健康网络的当前数据收集实践、学习需求、能力和总体兴趣；（2）确定他们对参与学习型健康网络的看法以及培养他们参与度和兴趣的方法。参与者是从参与以自闭症谱系障碍为重点的教育项目的社区医生中进行有目的抽样的。进行了深入的半结构化访谈。对29名参与者访谈的分析产生了五个主要主题：应对行政挑战、改进数据收集实践、增强提供者信心和能力、打破壁垒以及实现最佳实践的系统和社会障碍。本研究对社区提供者在社区提供自闭症护理方面所面临的挑战的经历提供了丰富而细致入微的理解。总体而言，这些发现表明学习型健康网络有可能解决社区提供者所强调的社区自闭症护理中的若干问题。
