Date of Degree
PhD (Doctor of Philosophy)
There are an estimated 5 million family caregivers supporting persons suffering from advanced heart failure (AHF) which constitutes the final stage of cardiovascular disease and is the primary cause of death for 1 in 8 Americans. AHF caregivers are instrumental in monitoring symptoms, promoting adherence, communicating with healthcare providers and making treatment choices for their care recipients (CRs) at the end of life. What little is known about the AHF caregiver experience comes from surveys, instruments and structured interviews and tends to exclude caregivers of CRs with advanced disease. The purpose of this interpretive phenomenology was to elicit the meaning of caring for a spouse with AHF and is the first of its kind in the US. Seven older spouses caring for persons with NYHA class III-IV HF recruited by the Advance Practice RN of a large regional hospital participated in 3 reflective interviews over the course of 2 months. Grounded in the Philosophy of Ethics by Paul Ricoeur and using a method based on his Theory of Interpretation, their reflections revealed the essence of the caregiver experience as "being fearfully vigilant, at the mercy of the disease while worrying about that which remains unspoken". Separate inquiries invited participants to explore the meaning of symptom interpretation which was likened to "a walk in the fog on the rocky shore by a treacherous river"; and communication which illuminated caregivers' ethical intention in caring for themselves and their loved ones. The fourth and final research question explored caregivers' meaning making in the experience, symptom interpretation and communication over time which uncovered several missed opportunities for advance care planning. Findings support and add to recent models in palliative care, shared care and advance care planning in AHF. This study gives healthcare providers insight into the challenges to respect, self esteem and autonomy encountered by aging couples in the context of AHF. Participants identified personal learning needs related to being a caregiver, symptom interpretation, and managing clinical and emotional manifestations of AHF. Naming specific barriers in communication with their CRs as well as with healthcare providers they called for relationship counseling for the CG-CR dyad, and to be respected as part of the team by healthcare providers. Participants gave moving examples of how current models of care failed to meet their needs, with urgent implications for coordinated care by an interdisciplinary team of healthcare providers. This study identified the need for more phenomenological inquiry to understand (1) implications of CR's cognitive fluctuations on decision making for preferences of care, (2) CRs' personality changes attributed to an awareness of death being near, (3) the need to retain a purpose in living both as individuals and as a couple, and (4) how CRs reconcile daily choices in illness management and adherence with preferences for care at the end of life.
caregivers, end of life, heart failure, Hermeneutic Phenomenology, Paul Ricoeur
xi, 328 pages
Includes bibliographical references (pages 307-328).
Copyright 2012 Heide Christine Bursch