Graduation Date

Fall 12-16-2022

Document Type


Degree Name

Doctor of Philosophy (PhD)



First Advisor

Bunny Pozehl

Second Advisor

Breanna Hetland

Third Advisor

Myra Schmaderer

Fourth Advisor

Chris Wichman

MeSH Headings

Heart failure caregivers, informal caregivers, heart failure dyads, nurse led educational interventions


ABSTRACT The purpose of this study is to explore the influence of contextual factors and caregiving process characteristics on proximal outcomes of the patient and caregiver after discharge from the hospital. The long-term goal of this research is to reduce caregiver burden and improve patient outcomes. Heart failure (HF) is an increasingly common chronic illness with unique caregiving needs and a high rate of hospital readmissions. Caregiver burden has been researched extensively in other areas of medicine such as oncology and dementia and has been reported for stable chronic HF patients in an outpatient setting. However, there is little research on perceived burden of HF caregivers at the time of an acute exacerbation hospitalization and discharge. The proposal is being guided by the Individual and Family Self-Management Theory (IFSMT) with the aims of exploring the influence of contextual factors and caregiving process characteristics on proximal outcomes of the patient and caregiver after discharge from the hospital. This was a cross-sectional, mixed-methods (quantitative/qualitative) study. Twelve HF dyads (caregiver and patient) completed questionnaires and a face-to-face interview at the one-week post discharge outpatient visit. Caregivers consisted of 6 female and 6 male participants with a mean age of 65.76. Caregiver burden as quantified by the Zarit Burden Interview (ZBI) showed a median of 15 with an interquartile range of 4 – 31 indicating a low level of burden. Qualitative results however demonstrated higher perceived burden especially in items regarding social isolation, fear of the future, caregiver dependence, and caregiver expectations. Male caregivers had lower burden scores compared to female caregivers (p=0.35). Goal congruence was present between caregivers and patients in terms of number of hours of caregiving with caregivers reporting 6.38 hours per week and patients reporting 5.54 hours of caregiving per week. Additionally, dyads were congruent in reporting compliance of diet, medications, exercise, and ability to manage HF symptoms. HF patients had a Charlson Comorbidity Index which predicted that in 10 years, only 22.75% of these patients would be alive. Sixty nine percent of the HF patients enrolled were class III of the NYHA and the average ejection fraction was 37.7% (SD=16.51). Caregivers who worked full-time and took care of higher NYHA class patients all had the higher scores in the ZBI and the Bakas Caregiving Outcomes Scale (BCOS). Patients report lower hours of caregiver time compared to the caregivers. This is the first study to address an important gap of exploring perceived caregiver burden at the time of a HF patient post-acute discharge outpatient visit. Future research using mixed methods and longitudinal designs should be performed using a larger sample with more diversity to further tease out factors that contribute to the trajectory of the HF disease and subsequent burden. Including caregivers in HF education at the time of hospital discharge and screening caregivers for perceived burden is important to potentially improve HF dyad outcomes and reduce re-hospitalizations.


2022 Copyright, the authors