Could a Roadmap to Wellness Solve Adherence to Health Regimens?

June 24, 2020

The piece you’re about to read is from Klick Health’s Life (Sciences) After COVID-19 series, a collection of expert perspectives designed to inform and inspire the life sciences community for the coming changes and opportunities we anticipate as a result of this global health crisis.

The Insight

“Reckless”, “Dangerous”, “Selfish”, “Absolutely and categorically wrong”, “In defiance of public-health rules... of common sense, and of basic human decency.”

These are actual words—spoken by politicians or printed in the news media—used to describe 20 and 30-somethings as they casually lounged in a public park on an unseasonably warm Saturday in May. As photos of the park-loving “deviants” quickly spread, people seemed to talk about them everywhere, “Did you hear about the park on Saturday? Can you believe that? It looked like Coachella!”

This is life with COVID-19. We’ve been prescribed a new health regimen to which we are all expected to adhere: sheltering at home, physical distancing, hand washing, and face masks. And we risk public shaming if we don’t maintain adherence. Calling out “deviant” or counter-normative behavior is a powerful tool that reinforces the rules and brings rule-breakers back in line.

But now it’s been months. We started our COVID-19 health regimen diligently and with our best efforts. And then came the nice day in the park. People needed a break. They didn’t want to hear any more pandemic-talk. No more statistics about the number of new cases or deaths. No more stories about the economic fallout. No more Zoom relationships, wondering why they can’t just have a real coffee in the sunshine with their friend. People feel surrounded and restricted by COVID-19 all day, everywhere. It’s inescapable.

The controversial park gathering and other breaches of our new health regimen have been explained as the result of “isolation fatigue”, whereby people act on feelings of restlessness resulting from the extended period of sheltering at home. Words like “fatigue” and “restlessness” imply that non-adherence to the rules is a weakness of strength or character.

If only people had more inner fortitude and commitment, they would stick with it. They would stay home by themselves on a beautiful day.

If only people had more inner fortitude and commitment, they would stick with it. They would stay home by themselves on a beautiful day.

There is, however, an alternative way to think about what happened in the park that sheds new light on what it’s like to adhere to a health regimen and how we can best support patients. People can only live so long with illness in the foreground of their experience. Just like the people in the park wanted to feel the warmth of the sun surrounded by friends, so too do people living with chronic conditions want to feel a sense of wellness in the foreground of their lives.

Wanting wellness is not a deficit of character. It’s a need that must be fulfilled. And when there’s no way to experience it in the midst of a health regimen, people will sometimes break the rules to get it.

What does it mean to have illness vs. wellness in the foreground?
Do our programs, services, and communications bring a sense of illness, or wellness, to the foreground of the patient’s experience and try to keep it there?
How can we help create wellness for patients as they manage a chronic condition? And could this be a strategy to boost adherence?

The Evidence

Barbara Paterson, a nursing scholar, published a paper entitled "The Shifting Perspectives Model of Chronic Illness” nearly two decades ago, and the core concepts continue to resonate today. In the model, Paterson points out that people living with a chronic condition oscillate between phases where illness is in the foreground of their experience and phases where wellness takes center stage. Living with illness or wellness in the foreground isn’t right or wrong. Rather, what’s prioritized reflects individual needs and situations at the time.

Illness in the foreground:

When illness is in the foreground, there is “a focus on the sickness, suffering, loss, and burden.” Illness becomes the main focus when a person feels threatened or when they worry that they might not be able to control their situation.

And while having illness in the foreground sounds undesirable, it can be a valuable and necessary space for people to inhabit. Consider, for example, how a newly diagnosed patient channels their attention and efforts to learn about their condition, how to manage it, and how to come to terms with the implications for their sense of self.

Wellness in the foreground:

By comparison, when wellness is in the foreground, the person’s sense of self comes into focus rather than the sickness. There’s a shift away from feeling controlled by their circumstances to being a creator of their circumstances. The focus turns to the emotional, social, and spiritual aspects of life.