Setchell J, Thille P, Abrams T, McAdam L C, Mistry B, Gibson B E
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, East York, ON, Canada.
The Wilson Centre, University of Toronto/University Health Network, Toronto, ON, Canada.
Child Care Health Dev. 2018 Mar;44(2):269-277. doi: 10.1111/cch.12526. Epub 2017 Nov 8.
Most research into clinical care of Duchenne or Becker dystrophinopathies (MD) has focused on slowing progressive muscular weakness and extending lifespan. Scarce attention has been paid to the "human" aspects of care such as psychosocial health, living a fulfilling life, or dealing with disability stigma. This study partnered with clinicians to identify and address local and systemic barriers to these human aspects of care.
We employed a participatory qualitative design at a multidisciplinary MD clinic using 2 methods: (a) ethnographic observations over a 6-month period of clinic visits of children with MD and families, involving 12 clinicians, and (b) 3 "dialogues" (2-way discussions) with these clinicians to collaboratively analyze practices and co-produce recommendations for change.
Our methods produced rich data that, when coanalyzed with clinicians and in consultation with a family advisor, provided deep insights into the practices and underlying assumptions of a neuromuscular clinic. Staff recognized the importance of the human aspects of care but, in reviewing the observational data, identified that it was given insufficient attention in (a) routine clinical processes, (b) clinician-family patterns of interaction, and (c) staffing allocations.
Although the human aspects of care were important to clinicians in the MD clinic, the routines and nature of the clinic meant these were frequently sidelined for biomedical objectives. We present collaboratively produced practical recommendations toward addressing this disjunction between ideals and practice including developing flexibility to tailor appointment frequency, composition, and length; providing time and physical space for psychosocial aspects of care; and clinician skill building to support child/family expression of "negative" emotions; and discussion of sociopolitical aspects of MD such as living with disability stigma. The study offers a set of considerations that, taking into account individual differences, offer insights for similar clinics elsewhere.
大多数关于杜氏或贝克肌营养不良症（MD）临床护理的研究都集中在减缓进行性肌肉无力和延长寿命上。对于护理的“人文”方面，如心理社会健康、过上充实的生活或应对残疾污名，关注较少。本研究与临床医生合作，以识别和解决这些护理人文方面的局部和系统性障碍。
我们在一个多学科MD诊所采用了参与式定性设计，使用两种方法：（a）对MD患儿及其家庭进行为期6个月的诊所就诊的人种学观察，涉及12名临床医生；（b）与这些临床医生进行3次“对话”（双向讨论），以共同分析实践情况并共同提出变革建议。
我们的方法产生了丰富的数据，在与临床医生共同分析并咨询家庭顾问后，这些数据为神经肌肉诊所的实践和潜在假设提供了深刻见解。工作人员认识到护理人文方面的重要性，但在审查观察数据时发现，在（a）常规临床流程、（b）临床医生与家庭的互动模式以及（c）人员配置分配中，这方面的关注不足。
尽管护理的人文方面对MD诊所的临床医生很重要，但诊所的常规工作和性质意味着这些方面经常为了生物医学目标而被边缘化。我们提出了共同制定的切实可行的建议，以解决理想与实践之间的这种脱节，包括灵活调整预约频率、组成和时长；为护理的心理社会方面提供时间和空间；临床医生技能培养，以支持儿童/家庭表达“负面”情绪；以及讨论MD的社会政治方面，如应对残疾污名。该研究提供了一系列考虑因素，考虑到个体差异，为其他地方的类似诊所提供了见解。
