Essentially all patients living with type 1 diabetes experience "diabetes burnout" at some time or other. What is diabetes burnout, what factors contribute to the problem, and what can patients and nurses do about it? Those questions are addressed in a descriptive study in the December issue of the American Journal of Nursing. The journal is published in the Lippincott portfolio by Wolters Kluwer.
Diabetes burnout occurs when patients experience exhaustion and detachment, leading to a sense of powerlessness and apathy about performing needed self-care, according to the qualitative research by Samereh Abdoli, PhD, RN, of University of Tennessee, Knoxville, and colleagues. They write, "It's vital that providers ask people with type 1 diabetes about diabetes burnout during regular follow-up visits, especially when there are indications that they're struggling to manage their blood glucose or are facing major life events. "
Patients share 'lived experience' with diabetes burnout
While patients and healthcare providers are familiar with the concept of diabetes burnout, there have been no evidence-based definition and no interventions to address the problem. Toward a better understanding of the problem, the researchers performed in-depth interviews with 18 patients with type 1 diabetes.
The patients – 11 women and seven men, average age 38 years – were asked to share their lived experience with diabetes burnout. Seven patients said they were going through diabetes burnout at the time of their interview; all said they had experienced it during the past year.
Based on the interviews, with feedback from patients, the researchers identified four main themes:
- Exhaustion. Diabetes burnout began with strong feelings of mental, emotional, and physical exhaustion related to the constant demands of diabetes care. One patient spoke of "the pressure of struggling with a lot of thinking and calculating." Others said they were physically tired, feeling "totally out of whack."
- Detachment. Patients described feelings of detachment – from their identify as a person with diabetes, from their self-care, and from their support systems. While some patients were able to resume self-care within hours or days, most said that their detachment lasted for weeks, months, or even years. As one patient said, "Burnout is apathy."
- Contributing factors. Patients identified a "snowball effect" of the many factors triggering diabetes burnout – especially the constant burden of self-care and failure to achieve goals such as blood glucose levels. Some criticized the "culture of perfectionism" in diabetes care: "Everything is just constantly based on having the perfect numbers."
- Strategies. Patients reported several strategies to prevent or overcome diabetes burnout – especially acknowledging the existence of burnout and "retaking ownership" of their diabetes. They cited the importance of connecting with support systems, including healthcare providers and family and friends, and having a positive mindset.
The findings have important implications for understanding diabetes burnout, Dr. Abdoli and coauthors believe. They suggest there's a spectrum from a milder "feeling burned out" and a more severe "being burned out," and propose distinct "engaged, exhausted, disengaged, and burned-out" profiles that patients may experience. The researchers conclude:
Providers should encourage people with type 1 diabetes, particularly those who may be burned out, to participate in open and nonjudgmental discussions about their level of exhaustion, the degree to which they're engaged or lacking in self-care, and their options for support."
Abdoli, S., et al. (2019) Experiences of Diabetes Burnout: A Qualitative Study Among People with Type 1 Diabetes. American Journal of Nursing. doi.org/10.1097/01.NAJ.0000615776.64043.be