Date of Award

2014

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Graduate Group

Nursing

First Advisor

Barbara J. Riegel

Abstract

In 2007, 38% of Medicare decedents with heart failure enrolled in hospice, along with an informal caregiver. Caregiver satisfaction with hospice care influences both patient and caregiver outcomes. Caregiver satisfaction with hospice has not been explored in the heart failure population and it is unknown whether caregiver satisfaction differs between the cancer and heart failure populations. This dissertation study had three major aims: 1) identify predictors of caregiver satisfaction separately in heart failure and cancer hospice caregivers; 2) test a model of the relationship between identified predictors and caregiver satisfaction; and 3) compare caregiver satisfaction between matched cohorts of heart failure and cancer hospice caregivers.

This was a retrospective cohort study of national data collected in 2011 by the National Hospice and Palliative Care Organization (NHPCO) using the Family Evaluation of Hospice Care (FEHC). FEHC responses of caregivers of adult cancer (n=70,782) and heart failure (n=19,818) patients were available for analysis, of which a stratified random sample of 1,000 each was selected for aims 1 and 2. Multiple linear regression and structural equation modeling were used to analyze the two cohorts separately, with burden measured by caregiver report of patient symptoms and satisfaction measured by the FEHC's four satisfaction domains and a question on overall satisfaction with hospice care. Propensity scoring was then used to match 7,370 individuals from each diagnosis group prior to comparing satisfaction outcomes via t-tests.

Both cohorts of caregivers were predominantly White females. Cancer patients were more likely to be male (52%) spouses (50%), while heart failure patients were primarily female (55%) adult children (56%). Caregiver age, race, education and relationship to the patient predicted satisfaction, along with place of care, length of stay and reported patient symptoms (p<0.004). Structural equation modeling performed revealed that caregiving demand mediates the relationship between most caregiver and patient characteristics and caregiver satisfaction, but that race moderates the relationship between demand and satisfaction. After propensity-score matching, there was no difference in satisfaction between heart failure and cancer caregivers.

Hospices should assess the needs of vulnerable caregivers and plan for additional supports. Further research is needed on factors influencing caregiver satisfaction.

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