One of my favorite things about my work is finding fellow change agents, particularly in unlikely places. A few years ago, I was on my way to a meeting with a pediatric gastrointestinal subspecialist to talk about new ways of caring for children with non-organic failure to thrive; essentially, a population of kids who do not have a specific medical condition to explain their difficulty growing in height or weight. This condition is often diagnosed during the first few years of life, when nourishment is a critical factor in a child’s healthy mental and physical development.
As I walked to the meeting, I mentally reviewed my research on this condition and imagined how our conversation might unfold. I made the (unfair and uninformed) assumption that he would want to build on the current specialty clinic delivery model, perhaps by creating a research-focused disease registry, or hiring more clinicians to increase the quality and quantity of clinic visits available to families. I thought about how I might respond, and advocate for more primary-care based services.
It became clear a few minutes into our conversation that I had just met another change agent, and his ideas of what was necessary and possible far eclipsed my own. He was the first to say the tools available to him as a subspecialist at a major pediatric health center were generally misaligned with what he needed to support families and children who experience non-organic failure to thrive. To put it another way: he had every tool available to rule out physiologic (“organic”) barriers to a child’s growth, but very few tools to fully assess social/emotional, environmental, or behavioral risk factors that are strongly correlated with non-organic failure to thrive.
This subspecialist imagined primary and specialty clinics partnering with lay home health providers, social workers and nurses to work with families in their homes to assess factors like parent-child bonding, feeding practices, maternal depression, and various challenges that can stem from poverty, like housing insecurity, food insecurity, or navigating WIC benefits. Each of these factors is demonstrated in the literature to be correlated with the development of non-organic failure to thrive, and to delay resolution of the condition. And yet, perhaps not surprisingly, it is rare for a medical treatment protocol to meaningfully assess or “treat” these home and community-based drivers.
The standard “prescription” for non-organic failure to thrive is to eat. (This straightforward prescription can actually require a fairly complicated regimen of certain foods or formulas at certain times or intervals. It can be difficult for families with many resources to execute, let alone those families who have limited resources.) These feeding regimens are typically designed by a clinical nutritionist and physician, and taught to the family in a clinic office or exam room. But, this subspecialist knew that the best feeding plan was only part of the solution; the home environment was an equal – if not greater – factor in helping a child grow and recover.
A lay home health provider could coach parents or guardians in their own homes as they execute their child’s feeding regimen. The provider could more meaningfully assess those factors listed above (e.g. parent-child bond, maternal depression, etc.), as well as access to basic tools like measuring cups to accurately mix recipes for high-calorie formulas, or high chairs or booster seats to create a regular setting and expectation for meal times. They could work with families to understand how cultural practices or other aspects of the home and family environment might impact the feeding plan, or the child’s response to the plan.
By working alongside parents or guardians, lay home health providers could also be in a better position to understand a family’s personal challenges in navigating public benefits. For example, in most states, families utilize WIC benefits to access formula or formula supplements for their children. The caloric needs for children with non-organic failure to thrive can exceed the standard monthly WIC benefit, causing families to either scale back the number of feedings per day, so that their child can eat something every day, or scramble to find formula and food support during the days or weeks between when WIC benefits expire and are reinstated at the first of the month. In either situation, families are doing the best they can to provide for their children. And, in either situation, a child’s recovery from non-organic failure to thrive will be slow, and may have lasting impact on that child’s development.
As I listened to this subspecialist dream out loud about the care delivery system that he wished for his patients, his colleagues and himself, I was struck by the accountability he demonstrated by working to find a better solution, and to understand how his skills could support that new means of delivering care. Over the subsequent months, we worked to coordinate care between the clinic and the kitchen tables of his patients. We designed a new model of care that centered on the family and home in every sense, and wrapped traditional clinical and medical services around that model. We identified the metrics we would use to determine whether the model improved care outcomes, experience and overall value. And we prioritized changes to policy that would remove barriers to accessing important public services, or coordinating care across different care teams.
I believe the premise of this model - that health begins at home - can and should be applied to many other populations, services and partnerships. The work begins with an exploration of the root causes of circumstances that impact children and families, which leads to developing evidence-informed, multifaceted solutions that build upon the natural strengths and assets of children, families and communities. Learn more about how Genesis Health Consulting can support your organization's goals by contacting us at info@genesishealthconsulting.com.