Caring for a Family Member with Heart Failure: The Caregiver’s Perspective

Saunders, Mitzi, PhD, ACNS-BC, RN

The purpose of the study was to explore the family caregiver’s perception of care associated with caring for a mostly homebound family member with moderate to severe heart failure (HF). This qualitative study explored the areas of the HF caregiver’s life that has been altered (positively and negatively) by the caregiving experience to identify areas for nursing care and caregiver support. Eleven caregivers were interviewed in their homes by the investigator and each interview lasted approximately 2 hours. All interviews were tape recorded. The patient sample consisted of seven male and four female patients. Of the 11 patients, four were receiving an additional patient monitoring system in the home (telemanagement), one patient was receiving inotropic intravenous medications, one patient had a ventricular assistive device and awaiting a heart transplant, and the other five patients were receiving traditional HF-care. All patient and caregiver participants were white except for one Asian patient/caregiver dyad. The family caregivers were spouses (n = 8) or adult daughters (n = 3). The transcribed interviews were analyzed using a line-by-line method to code, categorize and analyze the data. A second reviewer was used to validate findings. The following themes emerged: Constant Care, Constant Worry, Always Accountable; Hospitalizations, Necessary but Troublesome; Benefits of Nursing Support including Telemanagement; Family Support is a Must; and Connecting with God. These findings support the need for nurses to (1) assess and assist these family caregivers for their abilities to safely and competently perform the necessary patient self-cares associated with HF, (2) acknowledge and support telemanagement, family and spiritual support systems, (3) continue to find ways to reduce patient hospitalizations, and (4) examine those factors associated with patient hospitalizations that cause additional caregiver burdens. Overall, this study contributes to the small body of science related to HF family caregiving and promotes the need for on-going nursing support and research.