In Canada, like many other places, there is a steadily growing population of children with medical complexity, fragility and dependence upon technology. Why is this? We have improved intensive care therapies, improved assistive technologies and more expectations from society and parents to provide intensive interventions. As a result, children are living longer with increasingly complex and chronic conditions. Many children now need more than one type of homecare support.
In the past, many of these children would spend long periods of time in the hospital – weeks, months or even years. Over time, parents have said that they would like to take their children home, back to their family and community environment. Families have been willing and motivated to learn about the care that their child requires.
We recognize that families need support in order to provide complex care at home. This teaching tool is one way to support families. In 2013, we were awarded a grant from Operation Enfant Soleil to build this website.
Care practices can differ between hospital and home, and between health care teams. These differences in recommendations can be stressful for families and can create misunderstandings in the home care recommendations. The purpose of this project was to create a standardized, collaborative educational tool on the most common care practices that children with medical complexity require.
We used the process of “Appreciative Inquiry” to learn about and compare the homecare recommendations throughout Quebec for a variety of pediatric care needs. We identified the commonalities (about 85%) between care practices and also highlighted the differences (about 15%) in our recommendations. Then, we reviewed the published literature and aimed to resolve the discrepancies through a collaborative round table exercise which took place in February 2015 in Montreal, Quebec.
Beyond standardizing the content of our website care practices, we created new collaborations and communication between our health care partners. We learned several valuable lessons:
- There are many skilled nurses, doctors, and other health care professionals throughout our province, who are dedicated to teaching families how to safely and effectively provide specialized care in the home setting.
- Most of our homecare recommendations were remarkably similar with the main variations involving a) degree of sterility required or b) minor variations in the care practices. We found no large discrepancies in the care practices recommended.
- We also found that for some of the discrepancies in care practices, there was very little evidence to support the available options. In the future, this may help guide research into improved care at home.
Perhaps most importantly, we learned that there were children living at home, with specialized care needs, throughout our very large province. Families told us that they were delighted to have this type of resource, in both English and French, available to them in this format, that is freely and widely available for home computers, tablets and cell phones. Families helped us at every step in the development of this website.
Families also told us that they wanted a forum where they could post their own suggestions and to tell their stories. We hope to do this in the next version of our materials. For now, we welcome suggestions and feedback.
As far as we are able to determine, this resource, where many standardized home care practices are presented altogether, is unique. We hope that it becomes a “one-stop” resource for many parents, caregivers and health care professionals. Your feedback is welcome!