The Lived Experience of Heart Failure in a Lower Middle-Income Country: Patient and Caregiver Perspectives

Sunday, 17 November 2019: 3:35 PM

Joyette L. Aiken, MScN (Ed)1
Steve R. Weaver, PhD1
Desmalee Holder-Nevins, PhD2
Nancy Edwards, PhD3
(1)The UWI School of Nursing, Mona, The University of the West Indies, St Andrew, Jamaica
(2)Department of Community Health and Psychiatry, The University of the West Indies, St Andrew, Jamaica
(3)School of Nursing, University of Ottawa, University of Ottawa, Ottawa, ON, Canada

Heart failure is a growing problem in Jamaica, and patients rely on informal caregiving support to help them manage the condition as the disease progresses. A diagnosis of heart failure has far-reaching effects on patients and their families, as heart failure will gradually progress from relative stability, to the point where there is a pattern of acute exacerbations resulting in multiple hospitalizations, periods of recovery, and eventual demise.

This hermeneutic/interpretive phenomenological study gave insights as to how 11 Jamaican patients – caregiver dyads experienced and coped with heart failure. Patients were purposively selected, and their caregivers were invited to participate as well. Following informed consent, in-depth, unstructured interviews were held at the patients’ home, which afforded the privacy necessary to conduct the interview. All interviews were conducted by the researcher and tape recorded. Patient and caregiver interview transcripts were analysed from verbatim narrative which was mainly in Jamaican patois. A multi-stage data analysis, using Moustakas’ method, was done manually. The patients and their informal caregivers were all Jamaicans, and first-degree relatives, and who lived in the same households (spouses, daughters, and sibling).

Patients were mainly females (55%) with a mean age of 62 years. Seven themes were derived from patient interviews: Finding out; Now that I have heart failure; Helping myself; Wanting to know; Dealing with the system; Finding strength through (religious) faith; and Role changes. Caregivers were mainly females (73%) with a mean age of 49.6 years. Three themes were derived from caregiver interviews: Becoming a caregiver; Tell me, please; and The stress of caring.

Both patients and their caregivers wanted to know how to manage, not only the disease process, but also their individual roles, and the relationship issues that emerged.

Caregivers had no role preparation and relied on intuition because they lacked the information necessary for decision making. Intersecting themes reveal a significant gap in patient /caregiver knowledge that could negatively impact patient outcomes. Study findings provide a baseline for tailored interventions to improve knowledge levels and eventual outcomes for patients with heart failure, and their caregivers, in a LMIC.

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