Adams Sherri, Beatty Madison, Moore Clara, Desai Arti, Bartlett Leah, Culbert Erin, Cohen Eyal, Stinson Jennifer, Orkin Julia
Division of Pediatric Medicine, SickKids, The Hospital for Sick Children, Toronto, Canada.
SickKids Research Institute, Toronto, Canada.
BMC Health Serv Res. 2021 Apr 1;21(1):300. doi: 10.1186/s12913-021-06304-8.
Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs - hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care.
This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis.
Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care).
Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.
患有复杂疾病的儿童(CMC)需要众多跨不同学科、机构和护理环境的护理人员的专业知识。这导致了健康记录的重复、沟通障碍以及提供全面协作护理的机会有限。本研究的目的是从多个角度探讨沟通挑战以及解决方案/建议,这些角度包括:(i)家长;(ii)医疗保健人员——医院和社区提供者;(iii)CMC的教师,目标是为患者护理提供信息。
这项定性研究采用了解释性描述方法。对CMC的家长和护理团队成员进行了深入的半结构化访谈。访谈指南围绕沟通、协调、信息获取以及在医疗系统中的角色等问题展开。访谈持续进行直至达到主题饱和。访谈进行了录音,逐字转录,并使用主题分析进行编码和分析。
共进行了32次个人访谈,其中包括家长(n = 16)和护理团队成员(n = 16)。访谈揭示了2个主要主题以及几个相关的子主题(括号内):(1)CMC护理中的沟通挑战(组织政策和技术系统障碍、健康信息获取不足以及护理中缺乏伙伴关系)(2)沟通解决方案(可实时访问的共享系统、健康信息的普遍获取以及对护理的伙伴式贡献)。
家长、医疗保健人员和教师在照顾CMC的过程中面临着沟通和信息获取方面的多重障碍。本研究中的家长和护理提供者提出了改善沟通的潜在策略,包括促进实时沟通、健康信息的普遍获取以及有意义的伙伴关系。