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Insufficient Living: Experiences of Recovery After Infective Endocarditis

Rasmussen, Trine Bernholdt MScN, RN; Zwisler, Ann-Dorthe MD, PhD; Moons, Philip PhD, RN; Berg, Selina Kikkenborg PhD, RN

Journal of Cardiovascular Nursing: May/June 2015 - Volume 30 - Issue 3 - p E11–E19
doi: 10.1097/JCN.0000000000000144
Articles: Online Only

Background: Infective endocarditis (IE) is a traumatic health event, and recovery is often associated with massive physical deconditioning and reduced quality of life. Patients also report reduced cognitive functioning and are at risk of developing anxiety and depression as well as posttraumatic stress disorder. Although studies have found that survivors of IE have impaired physical functioning and mental health, little is known about patient experiences contributing to these findings.

Objective: The aim of this study was to describe patient experiences of recovery after IE.

Subjects and Methods: Within a phenomenological-hermeneutical framework, a qualitative interview study was conducted that included 6 men and 5 women (aged 29–86 years). Patients were interviewed 3 to 6 months after discharge. Analysis consisted of 3 levels: naive reading, structured analysis, and critical interpretation and discussion.

Findings: The overall concept that emerged was “Insufficient Living.” Patients all experienced a life after illness, which was perceived as insufficient. The overall concept can be interpreted in terms of the following 3 themes. The first was “an altered life,” where participants described a phase of adaptation to a new life situation, which some perceived as manageable and temporary, whereas others found extremely distressing and prolonged. “Shocking weakness” was experienced physically, cognitively, and emotionally, and although it subsided quickly for a few, most experienced a persisting weakness and felt frustrated about the prolonged recovery phase. In “the road to recovery,” support from relatives and healthcare professionals, as well as one’s own actions, was emphasized as important in facilitating recovery.

Conclusions: Recovery after IE is perceived as “Insufficient Living.” Patients experience an altered life and shocking weakness, and on the road to recovery, support is needed. Research in follow-up care, supporting patients’ ability to cope with potential physical and psycho-emotional consequences of IE, is encouraged as a result of these findings.

Trine Bernholdt Rasmussen, MScN, RN PhD Fellow, The Heart Centre, Rigshospitalet, Copenhagen University Hospital, and PhD Fellow, Department of Cardiology, Gentofte Hospital, Gentofte, Denmark.

Ann-Dorthe Zwisler, MD, PhD Cardiologist and Trial Manager, The Heart Centre, Rigshospitalet, Copenhagen University Hospital; Associate Professor, National Institute of Public Health, University of Southern Denmark, Copenhagen; and Chief Physician, Department of Cardiology, Holbæk Hospital, Region of Sealand, Denmark.

Philip Moons, PhD, RN Professor, The Heart Centre, Rigshospitalet, Copenhagen University Hospital, Denmark, and Professor, Centre for Health Services and Nursing Research, KU Leuven–University of Leuven, Belgium.

Selina Kikkenborg Berg, PhD, RN Researcher and Project Manager, The Heart Centre, Rigshospitalet, Copenhagen University Hospital, and Researcher and Project Manager, Department of Cardiology, Gentofte Hospital, Denmark.

The study was partly funded by Gentofte Hospital and Rigshospitalet. The funders had no influence on the study design, the execution of the study, or the interpretation of data.

The study complies with the Declaration of Helsinki II 2008 and has been approved by the regional Research Ethics Committee (j.nr. H-1-2011-129) and the Danish Data Protection Agency (j.nr. 2007-58-0015). The CopenHeart IE trial is registered at ClinicalTrials.gov (NCT01512615).

The authors have no conflicts of interest to disclose.

Correspondence Trine Bernholdt Rasmussen, MScN, RN, CopenHeart, The Heart Centre, 2151, Copenhagen University Hospital, Rigshospitalet, Blegdamsvej 9, DK-2100 Copenhagen, Denmark (trine.b.rasmussen@rh.regionh.dk).

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