Submitted by Kasey Boehmer
In the midst of this COVID19 pandemic, those of us seeking to be responsible citizens, keep social distancing, while continuing to fulfill our obligations to family, community, and work, are feeling overwhelmed. It is all too much. Our research may help us understand that feeling and perhaps find ways forward.
In 2016, we released a manuscript titled: “Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis.” This review synthesized 110 published papers across a variety of chronic conditions seeking to understand what exactly gives people the capacity to handle chronic illness. We describe patient capacity as the abilities and resources that are mobilized to support the work of life and healthcare.
Our review uncovered five factors that a patient must interact with to generate their capacity: biography, resources, environment, patient work, and their social network (BREWS). We call this the descriptive Theory of Patient Capacity, and will demonstrate how each construct works when dealing with chronic illness. A biography is the narrative of normal life that we create; when chronic illness comes along and interrupts this narrative by way of bothersome symptoms and new treatment routines, one can experience biographical disruption. Resources are what are mobilized in an effort to support the work of managing life and healthcare. These may include things like finances, transportation, physical energy, time, knowledge, self-efficacy, etc. Environments are places of work, living, and healthcare. Patient work, when done in small segments, can generate new capacity for additional tasks through the experience of accomplishment; when work is given in an overwhelming fashion (all the tasks at once), capacity may be reduced. Finally, the social network can generate capacity through support, or be detrimental to capacity if unsupportive. For example, a patient who needs to eat at specified meal times could have social connections that subsequently adjust their meal times in an effort of togetherness or tells the patient it is no big deal to deviate from the plan that may be best for their condition’s management.
This theory was derived from published experiences of patients living with chronic illness, which is a population familiar with the sometimes massive disruption of life from diagnosis and treatment. However, it occurred to me yesterday on my walk that it can actually be a useful framework for what we are experiencing on a societal level right now amidst a pandemic. Almost everyone that I have spoken to by email, phone, or facetime, has indicated what seems to feel like the shrinking in their cognitive bandwidth. People are saying things like “I handle one tiny thing, and the next thing comes at me.” How might we use the BREWS framework to navigate the current climate? Let’s take a look at what is happening right now in each domain.
Biography – each one of us has a well negotiated set of routines, social roles, and normalcy. We may be, for example, employed by large organizations, run small businesses, or stay-at-home parents for kids. We all have routines of day to day life such as cooking breakfast, going to our favorite restaurants for lunch, friends we regularly socialize with, and extracurricular activities for ourselves or our children in the evenings. Suddenly all of our routines are being upended. We are rapidly evolving our daily routines to try to accommodate these life changes. Suddenly, we need to work from home, sometimes while simultaneously becoming homeschool teachers. Our typical jaunts from place to place are almost entirely restricted at the moment beyond what is absolutely necessary as we all work to minimize societal impact of the COVID-19 pandemic. These massive shifts in routine create a loud roar of cognitive dissonance in our brains, which find comfort in routine. Creativity is in short supply as our brains work to learn all the new tasks very rapidly. Put in short, we are all in the midst of a massive-scale biographical disruption.
Resources – These are the things we mobilize to deal with such shifts, and they seem uncertain in pandemic times. Many people are being faced with the reduced ability to work for income, especially if they are in a service industry or owners of a business. This straps our collective financial resources, which otherwise might be employed to cope with various aspects of disruption (e.g. hiring childcare). Our knowledge base is one we often mobilize to cope with new situations, and yet our knowledge base about the novel COVID-19 virus appears to change quite literally by the hour. Suddenly, we all need some knowledge of epidemiology to understand the “flatten the curve” lingo being used worldwide. Self-efficacy is a resource of confidence generated from doing or watching others do, and yet very few of us have experiential knowledge of such a situation to draw upon for confidence in this new one.
Environment – For many of us, our environments are now rapidly decreasing in scope as we hunker down in our homes. The places we seek care, an important part of our capacity in coping with healthcare matters, are rapidly trying to adapt from planned, routine care with some emergent services, to crisis response in a pandemic. As the ground we stand on feels shaky, so do we.
Work – To generate capacity, we actually have to accomplish some work, and it must be broken down in such a way that we can do so. Having such a volume of work that it feels too cumbersome to break down is a significant detriment to our capacity. Right now, in the span of seven to ten days, most of us have had new work thrown at such rapid-fire pace, we feel completely paralyzed to act.
Social Network – In trying times, it is not uncommon for us to lean on our family, friends, and even acquaintances to get through. Often, we can even “borrow” some capacity from others to act in difficult times (e.g. asking someone to go to the pharmacy for you when you’re feeling too ill to go yourself). However, in such a time where every person’s capacity seems taxed, it feels uncertain who we might turn to in order to borrow anything, including toilet paper. Furthermore, even if not providing practical support, our social network often provides emotional support. We are mostly used to this happening during face-to-face interactions with physical displays of care, such as hugs. Yet, in a time of “social distancing” we find ourselves physically at a distance from those who may be our rocks. We are forced to think creatively about how to engage otherwise, through text, phone, or video. In a time where creativity is already taxed for reasons above, this may feel like too much.
This, my friends, is WHY it all probably feels like a little too much right now. If you’re feeling like your capacity is completely overwhelmed at the moment, know it is to be expected when we look at the current situation through the BREWS framework. So what are we to do? It seems we may be in for an indeterminate number of days ahead where the ground feels shaky, which means we need to build our capacity accordingly. We also don’t all have a personal capacity coach sitting on our shoulders to help us do this.
First, take heart in knowing that when working to build capacity with patients now living with chronic illness, we don’t start by tackling every single area of capacity all at once – that overwhelms overwhelmed people. What we would typically do is start by assessing where people are at – by taking stock, we can assess where we need to bolster our capacity, but also where we already possess strengths. Then, based on what one wants to work on, we would create small experiments to try. Note, I did not say goals, and I did not say assignments. Experiments. Each experiment is a new opportunity to learn something. Even if it didn’t go as planned, each time we can ask ourselves, what did I learn? We also don’t set up too many experiments. For example, we might have 1 – 3 in a week. Then, at the beginning of the next week, we would assess what worked, what didn’t work, and what we learned. Based on that information, we would keep the ways of working we liked and build on them. We would discard what we didn’t like after extracting the learnings, and choose new experiments. This process often continues for weeks or even months, so be patient with yourself. Reach out virtually to those in your social circle so you can be mutually supportive even while physically at a distance.
Hang tough friends, we can do this! Tell us about what of this was helpful and what you’d like to see more of – we are here together for the ride.