As healthcare professionals it is often presumed that we alone know what is best for our patients. Unfortunately, many health care providers also believe this to be true. While complex medical decision making may indeed rest on the shoulders of the medical team, the approach to such decisions should not be independent of the child (patient) and their family. The balancing act of providing efficient health care while actively seeking input from the child and family receiving the care requires time, experience and humility. Mahant, Jovcevska & Wadhwa (2012) published a paper on the nature of excellent clinicians. They outlined that the most excellent of clinicians demonstrate significant respect for everyone (child, family, and other health care providers). Furthermore, they take the time to gain a deeper understanding of the child within the context of their family. Imagine how respect and understanding the life of a family could help inform goals of care and decision making.
Our research has qualitatively challenged health care providers to leave their comfort zone and consider an alternative pictorial approach to understanding the child in the context of their family. Furthermore, we have asked parents to tell us about the lives of their children with medical complexity, including all the things they have to manage (equipment, hospitals, schools , funding etc.), as well as what their children are like, what makes them happy, and what makes them laugh. This is not a new concept. Many parents have tried creating pictures or maps of their complex lives. Some have even posted pictures of their care maps online to raise awareness and support other parents and health care providers in their journey.
Even though parents of children with medical complexity have found value in this tool and are using it, the medical world has yet to really acknowledge its value or utilize such a wonderful information sharing tool. Our research addressed this gap in knowledge. We asked parents of children with medical complexity (CMC) to create care maps and tell us about them. Then we asked health care providers to look at the care maps and talk about what they meant and how they could potentially be used in a health care setting. Preliminary results revealed positive feedback from both families and health care providers. The consideration of non-traditional methods of data collection informing us about the lives of our patients is long overdue. Partnering with our families will provide us with a much richer understanding of their lives and together we can decide what the best care is for each child and their family.
– Sherri Adams, January 2016
Mahant, S., Jovcevska, V., & Wadhwa, A. (2012). The nature of excellent clinicians at an academic health science center: A qualitative study. Academic Medicine, 87(12), 1715-1721.
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