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heart failure, spouse caregivers, palliative care



  1. Hupcey, Judith E. EdD
  2. Fenstermacher, Kimberly MS
  3. Kitko, Lisa PhD
  4. Fogg, Janet MSN


As the incidence of heart failure increases, more patients and their caregivers are faced with needs related to the unpredictable nature of the illness. Palliative care interventions are an appropriate way to meet these needs; however, palliative care remains underutilized. Family caregivers, particularly spouses, play an important role providing care to these patients; thus, it is important to consider their needs when planning interventions. The purpose of this article was to describe the needs of spousal caregivers of patients followed up at specialized heart failure centers within the context of the dynamic ebb and flow of heart failure. Forty-five spouses (n = 45) were interviewed over 12 to 18 months to follow their changing needs. Grounded theory methods were used to collect and analyze data. Four categories of overarching needs amenable to palliative care interventions were identified: informational, financial, psychosocial, and physical. These needs were always present but changed during times of medical stability versus exacerbation/medical instability. Caregivers continually reprioritized their needs in response to the heart failure experience; therefore, episodic offerings of palliative care during exacerbations are inadequate. Nurses can play a pivotal role in facilitating comprehensive palliative care interventions to improve the experience of those caring for and living with heart failure.