UCSF

Heart failure (HF) is a chronic progressive condition, with debilitating symptoms. Despite the pivotal role family caregivers play in the care of HF patients, family caregiving has received little attention in HF research.

The primary aims of this dissertation were to describe the nature of family caregiving in the context of heart failure (HF) and to identify factors associated with the impact of caregiving. A particular focus was on the positive aspect of caregiving and the role of social support on the impact of caregiving. This dissertation includes a review of the literature and findings from three research studies.

The first study is a secondary analysis of data from 338 partners of HF patients and 1202 partners of healthy individuals. Care tasks performed by partners were compared between the two groups. Partners of HF patients were more likely to provide personal care and emotional care than partners of healthy individuals, even when only non-HF-specific care tasks were investigated.

In the second study, data were obtained from 76 HF patient-family caregiver dyads. Caregiving had both positive and negative impact on family caregivers. The level of caregiver perceived control and social support were important factors in the impact of caregiving measured with the Caregiver Reaction Assessment. The severity of HF and patients' clinical events were also associated with the impact of caregiving.

In the third study, family caregiving was examined in the context of a specific etiology of HF, pulmonary arterial hypertension (PAH). Among the 35 family caregivers of PAH patients in the study, 14% were identified as having moderate to severe depressive symptoms. Most caregivers were involved in managing care for the patient and helped the patient with self-management activities. Lower level of social support was significantly associated with more severe depressive symptoms in caregivers.

The role of family caregivers becomes increasingly important with the rising prevalence of HF and increased emphasis on self-management. The needs of family caregivers should not be overlooked in clinical practice. Social support and information to meet the demands of caregiving need to be provided to family caregivers in order to optimize the caregiving experience.