Partners of ICD patients - An exploratory study of their experiences

The experiences of partners who care for and support the needs of a loved one with an implantable cardiac defibrillator (ICD) remain largely unknown within Europe.This study explored the nature of partner's experiences from the pre-ICD implantation phase up until a maximum of 20 months at home.Eight partners cohabiting with a recipient of an ICD were interviewed using a semistructured schedule. All interviews were transcribed and content analysed for emerging categories and themes.Four themes representing 11 categories conceptualised the partners' experiences, these included: Acknowledging the patient's need for the device, reactions to the device, safeguarding the patient, and returning to normality.This qualitative study suggests that partners of ICD recipients progress through various difficult and adaptive stages when learning how best to support the patient. A point is reached when most are able to assume control and normalise their lives. This transformation is slow; however, to improve this process and empower partners, nurses should provide relevant information and include them in decisions affecting the patient. Further research into the unique needs of partners, which includes international perspectives, would be significant in developing practice and theory in this area. © 2004 European Society of Cardiology. Published by Elsevier B.V. All rights reserved

Quality-of-life Measurement in Chronic Heart Failure: Do We Take Account of the Patient Perspective?

The modern management of chronic heart failure has led to improved life expectancy, functioning and health-related quality of life (HRQL). HRQL measures the effects of an illness or a treatment from the patient's perspective. It is now recognised that the patient's perspective is as legitimate and valid as the clinician's in monitoring health care outcomes. Although there are a number of quality-of-life measures, which can be separated into two types—generic and disease specific—many have been developed, with little or no account being taken of the patient's perspective. Because most of the widely used measures are not patient centred, they may lack sensitivity and specificity in determining those aspects of HRQL important to individual patients. This paper reviews the use of quality-of-life assessment tools in the evaluation of patients with heart failure