School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia.
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada.
PLoS One. 2022 Feb 25;17(2):e0263956. doi: 10.1371/journal.pone.0263956. eCollection 2022.
This paper evaluates a study which aimed to enhance clinical care of young people with Duchenne or Becker muscular dystrophy (MD) and their families in two Canadian neuromuscular clinics. We report on how/why the study changed clinical practices in relation to the 'human' (e.g., emotional, social, existential, cultural) dimensions of living with MD.
The intervention involved regular dialogical exchanges with clinicians across the two sites, during which direct observations of the clinics' care practices were discussed and changes were planned. We drew from realist evaluation approaches to assess changes in clinical care associated with the intervention. Data sources included dialogical exchanges; clinic observations; interviews with clients, families and clinicians; and team analysis sessions.
Our evaluation suggests the clinical teams shifted their thinking and practices towards greater consideration of human aspects of living with MD including: more routinely attending to emotional, social and experiential dimensions of living with MD; reconceptualisation of risk; and considerations of affective aspects of clinical care. Not all clinicians changed their thinking and practices in the same ways, or to the same extent, and there were differences between the sites. These differences were likely due to numerous factors, including varying levels of clinician comfort with examining and shifting their own practices, and differing formal and informal clinic routines at each site.
Overall, this intervention was able to shift clinic practices, and could feasibly be adapted across rehabilitation settings.
本文评估了一项旨在加强加拿大两家神经肌肉诊所中对杜氏肌营养不良症（Duchenne 或 Becker 型肌营养不良症）患者及其家庭进行临床护理的研究。我们报告了该研究如何/为何改变了与 MD 患者生存的“人文”（如情感、社会、存在、文化）维度相关的临床实践。
干预措施包括在两个地点的临床医生之间进行定期的对话交流，在此期间讨论了对诊所护理实践的直接观察，并计划进行更改。我们借鉴了现实主义评估方法来评估与干预相关的临床护理变化。数据来源包括对话交流；诊所观察；对患者、家属和临床医生的访谈；以及团队分析会议。
我们的评估表明，临床团队改变了他们的思维和实践方式，更加关注 MD 患者生存的人文方面，包括：更常规地关注 MD 患者的情感、社会和体验方面；重新概念化风险；以及考虑临床护理的情感方面。并非所有临床医生都以相同的方式或相同的程度改变了他们的思维和实践，而且两个地点之间存在差异。这些差异可能归因于多种因素，包括临床医生检查和改变自己的实践的舒适度不同，以及每个地点的正式和非正式诊所常规不同。
总体而言，该干预措施能够改变诊所的实践，可以在康复环境中进行适应。
