Living with an unfixable heart: a qualitative study exploring the experience of living with advanced heart failure.

Full Abstract

BACKGROUND: Nurses working with patients with advanced heart failure need knowledge that will help us to help patients cope with their situations of chronic illness. However, our knowledge bank is deficient due to the scarcity of inquiry that takes the affected person's point of view as its central focus. AIM: The aim of this study was to describe patients' experiences of living with advanced heart failure. METHODS: The study sample (N=9) consisted of male (N=6) and female (N=3) patients with advanced (NYHA classes III-IV) heart failure. The design was qualitative and open unstructured interviews were audio-taped and transcribed verbatim during 2006. RESULTS: Four main themes emerged: Living in the Shadow of Fear; Running on Empty; Living a Restricted life; and Battling the System. The experience of living with advanced heart failure was described as a fearful and tired sort of living characterised by escalating impotence and dependence. CONCLUSIONS: The findings suggest that there may be an illogical but enduring ethos of 'cure' pervading health care worker's attitudes to advanced heart failure care. This mindset might be working to hinder the application of additional or alternative therapies, which might better palliate the physical and psychosocial distress of patients.

Author information

Author/s: Ryan, Marie (M); Farrelly, Mary (M);

Affiliation: Clinical Nurse Specialist, Heart Failure, CResT Department, St. James Hospital, Dublin 8, Ireland. meryan(-atsign-)stjames.ie

Journal and publication information

Publication Type: Journal Article; Research Support, Non-U.S. Gov't

Journal: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology (Eur J Cardiovasc Nurs), published in Netherlands. (Language: eng)

Reference: 2009-Sep; vol 8 (issue 3) : pp 223-31

Dates: Created 2009/07/20; Completed 2009/10/08;

PMID: 19297250, status: MEDLINE (last retrieval date: 10/8/2009, IMS Date: )

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

External Links for this article
(including full text providers, if available):

Click Electronic Full-text Provider Links to see options for finding the electronic full text links to this article. Note there may be a subscription or fee required for access to the full text. See our FAQ for information on finding FREE full text articles.

This article may also be located in paper journal collections available in many libraries. Use the Journal and Publication Information above to find the full article.