Academic journal article Health and Social Work

The Lived Experience of Heart Failure at the End of Life: A Systematic Literature Review

Academic journal article Health and Social Work

The Lived Experience of Heart Failure at the End of Life: A Systematic Literature Review

Article excerpt

Matters of the heart, literally and figuratively, have long been the subject of social work practice and research. Heart failure (HF) describes a condition in which the heart is not adequately pumping blood through the body because of its inability to fill with enough blood or its inadequate pumping force (National Heart, Lung, and Blood Institute, 2008). HF has been described as epidemic, due to increasing incidence, hospitalizations, health care costs, and mortality related to this condition (Redfield, 2002). A continuation of these trends is likely because of the higher incidence of HF among older, compared with younger, adults (American Heart Association [AHA], 2006) and the expected dramatic increase in the age-65-and-over population in the coming decades (U.S. Census Bureau, 2006). Despite numerous advances in medical and surgical care in the past three decades, mortality is high among those with advanced HE with rates similar to those for breast and colon cancers. Among people afflicted with the most advanced stage of HF (New York Heart Association Class IV), two-year mortality is as high as 90 percent (Stewart, 2003). Mortality rates from HF also increased by 20.5 percent from 1993 to 2003 (AHA, 2006), suggesting the need for greater attention to end-of-life issues.

Social work researchers and practitioners have established key research priorities for their work in end-of-life care (Kramer, Christ, Bern-Klug, & Franceur, 2005), including the identification of gaps and fragmentation in service delivery and the need to obtain more information on barriers and challenges to health care among diverse populations. To address these challenges, more information is needed from the perspective of people with HF, who face many distressing and complex issues at the end of life. However, despite the obvious importance of first-person accounts in informing social work practice, the emerging literature on the lived experience of HF has not been examined systematically. To discern the most important issues that will be relevant for social workers in meeting the needs of the growing number of people with HF, such a review is greatly needed.

The purpose of our study was to systematically review the literature relating to the lived experience of HF and to identify common themes identified in this literature. By "lived experience" we are referring to the experience of having HF among people with this condition, as revealed through in-depth, first-person accounts obtained from qualitative methodologies such as comprehensive interviews. A goal of qualitative research is to represent the participants' own subjective experiences in their lives. The use of quotations to identify the individual's own words in the presentation of findings helps to reflect the richness of the experience and to ensure authenticity of the results (Fossey, Harvey, McDermott, & Davidson, 2002). Such information is also critical to improving the quality of end-of-life care, because "the lived experience of patients and caregivers in their cultural context of illness must become as alive and vibrant to the physician as is the disease that is being 'treated' through the lens of medicine" (Farber, Egnew, Herman-Bertsch, Taylor, & Guldin, 2003, p. 27). Information on the rived experience is equally critical as a means of advancing social work practice for those with chronic conditions. Therefore, we decided to focus on articles that presented participants' views in their own voices and to include only those articles that present verbatim quotes from research participants. In addition, because end-of-life care issues are a relatively neglected area for HF (Gibbs, McCoy, Gibbs, Rogers, & Addington-Hall, 2002; Nordgren & Sorensen, 2003), we focused our review on those issues for this population.

METHOD

This study is a focused literature review, combined with thematic analysis of articles addressing the lived experience of end-of-life care for people with HF. …

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