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In the 1990s, heart failure (HF) emerged as a significant
public health threat and reached epidemic proportions. As
the population of patients with HF increases, millions of
family members will become informal caregivers for these
patients and provide a central source of support in
patients’ self-care. Researchers have suggested that support
from family or significant others can have a positive impact
on patients’ outcomes including quality of life, morbidity,
and mortality. However, family members can suffer
significant stress related to their caregiving and support
roles. As a consequence, family members often experience
emotional distress (i.e. depression and anxiety). In the
inevitable interactions between patients and family
caregivers in the HF self-care process, a family caregiver’s
emotional distress and perceived burden may be transmitted
to the patient. It has been reported that HF patients and
family caregivers have similar levels of emotional distress.
However, it is not known whether family caregiver distress
and perceptions of burden contribute to patients’ poor
emotional well-being, quality of life, morbidity, and
mortality. In the very limited cross-sectional studies in
this area, family caregiver emotional distress was
associated with patient quality of life. However, the
longitudinal effects of family caregivers’ perceived burden
and emotional distress on patients’ clinical mortality and
morbidity outcomes are unknown.
The purpose of this longitudinal study is to examine the
impact of family caregivers’ psychological distress on
quality of life and physical health outcomes of adults with
HF. A total of 180 HF patient-family dyads will complete
questionnaires about emotional distress, caregiver burden,
and quality of life. Patients will be followed for one year
to collect rehospitalization and mortality data. This grant
will allow the PI to: (a) obtain advanced knowledge about
patient-family dynamics and psychological distress and (b)
receive the training necessary to develop family
intervention programs and conduct a longitudinal clinical
outcome study.
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