Navigating the Diabetes Maze: Uncovering the Invisible Burden of Socially Vulnerable Patients

BY Sofie á Rogvi

Socially vulnerable type 2 diabetes patients live shorter lives, experience more diabetes complications and benefit less from health services than other type 2 diabetes patients. Diabetes treatment involves both formal health care including consultations and lab tests and self-care including dietary changes, exercise, and medication taking. As disease progresses patients often experience comorbidities and complications demanding specialized health care. This is often more centralized and demand referral potentially making it challenging for socially vulnerable patients first to access and then to attend care.

My colleagues and I therefore set out to understand what happens when socially vulnerable type 2 diabetes patients need specialized care. To do this, we made participant observation at a specialized diabetes outpatient clinic and interviewed 16 type 2 diabetes patients and their providers. The aim was to study the work and demands it takes to access and attend specialized diabetes care and what may stand in the way for patients to do this work.

Accessing health care both includes documenting the need for specialized health services e.g. through continuous blood sugar monitoring and negotiations with referring health professionals. Attending health care involves coordinating, and “running” between appointments with different specialists often different places. When patients experience multiple diseases and complications this may become a fulltime job on its own. Besides the actual time needed to attend consultation and lab tests the mental burden of health care demands energy of the patient. It can be overwhelming for patients to call and arrange visits as well as processing test results.

The patients in our study experienced – as many other socially vulnerable patients – competing demands that took either their time or energy away from diabetes treatment and rehabilitation. In many cases, these competing demands were related to the patient’s work situation. Both employed and unemployed patients needed to prioritize activities related to either their employment or the municipality paying their benefits. This often left neither time nor energy for e.g. planned exercise or rehabilitation. In some cases, tasks related to the patients’ employment led the patient to attend more health care or abstain from certain drugs posing risk to their employment.

Through studying patient work closely in practice, the health system’s inherent expectations of patient work become visible in ways not necessarily spelled out in policy papers and disease management programs. This ethnographic study shows the efforts, skills, and initiative it takes to access and benefit from health services and the way these efforts are dependent on context. Thus, qualitative research in general, and ethnography in particular, is needed to describe and characterize the patient work involved in caring for oneself and in making oneself available to be cared for by professionals.

Our research also demonstrates, what has long been argued in public health, that health problems are not solely solved by the health services but are highly dependent on the individual’s particular social network and larger societal structures. This also means that both patient work and the health services that delegate and delimit the specific characteristics of this work are contextual and may differ from country to country, system to system, provider to provider, hospital to hospital. However, the insight that patient work is necessary, often invisible, and inherent in the organization of health care services may travel between contexts. Everywhere, a closer look at those – not the least the socially vulnerable patients – who carry out patient work is necessary. Making patient work as visible as possible is the first step to ease its burden and a necessary step if we aim to enhance equity in access and benefit of care.