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adherence, chronic illness, health work, heart failure, self-care, trajectory of chronic illness theory



  1. Granger, Bradi B. PhD, RN, FAAN, FAHA
  2. Sandelowski, Margarete PhD, RN, FAAN
  3. Tahshjain, Hera RN, MSN, CCNS
  4. Swedberg, Karl MD, PhD, FESC
  5. Ekman, Inger PhD, RN, NFESC


Background and Research Objective: Despite the known benefit of self-care strategies for symptom management in heart failure (HF), most patients are unable to perform self-care activities successfully. This study therefore examined how communication about the HF regimen between patients and their physicians is experienced and understood by both partners.


Subjects and Methods: Six pairs (n = 12) of adult patients with HF who were admitted for acute symptom exacerbation and their physicians were interviewed for this qualitative descriptive study in the inpatient setting. Semistructured in-depth interviews were conducted. Data were analyzed using content analysis.


Results: Both patients and providers described adherence to the HF regimen as "work." Both reported the same list of tasks and knowledge requirements as key components of the HF regimen, and both reported delegating their own regimen-related work to others. Despite these similarities, perceptions of the nature and complexity of the work of the HF regimen differed. Patients described the regimen as "hard work," but physicians perceived patients as nonparticipatory in self-care, in spite of the instructions being "easy." Patients perceived themselves as understanding what to do but needing help with how to carry out self-care. By contrast, physicians perceived patients as not understanding what the regimen requires and therefore needing more repetition of knowledge-based instructions.


Conclusion: The self-care regimen in chronic HF is characterized by both patients and physicians as work, but patient-physician dyads show divergent understandings of that work. Future research to improve adherence should move beyond the patient to look at the nature of the work itself and the relationship of the patient and caregivers to the work.