Living with heart failure: An integrative review

Abstract

Objectives

To conduct an integrative review that explores the experiences and perceptions of patients who have heart failure to find any commonality that might enhance care giving to this patient group and areas for future research.

Background

Patients are expected to take responsibility for much of the day-to-day management of their heart failure and modify their behaviour to maintain and improve their health. The degree of responsibility which patients can take is to a large extent dependant on how they see themselves in the context of their new situation. Limited research has been undertaken about how patients come to terms with their new condition and subsequent ‘new self’, but this has not been linked to patients’ ability to take more responsibility. This review will integrate this notion of self-care, personal responsibility and the implications of this for nursing care, as this is not identified in current guidelines.

Design and data sources

Using an integrative review method, Ovid MEDLINE (R), CINAHL, EMBASE, AMED, HMIC, BNI and PsycINFO databases were searched from January 1985 to May 2008. 18 papers were selected that most clearly reflected the concept of understanding the patient's experience of living with heart failure.

Results

Patients appear to undergo a process of taking on a new identity, ‘a new self’. From the review five conceptual categories emerge: diagnosis and manifestations of heart failure; perceptions of day-to-day life; coping behaviours; role of others and concept of self which influences all of the other categories. This maps a journey, as the individual experiences heart failure; their success or failure at adapting to this new sense of self, will influence self-care behaviours.

Conclusions

Literature that explores understanding the patient's experiences of living with heart failure, taking on a new identity and the influence of this on their self-care behaviour, is limited. The integration of the new condition with patient's sense of self is likely to a have a major impact on the effectiveness of treatments offered. An essential and ethical care component for patients with heart failure should be an ongoing assessment of their experience of the situation that they live with.

Introduction

Among chronic diseases, heart failure is the most common single cause of hospitalisation in industrialised countries with frequent re-admissions (McMurray and Stewart, 2000, Swedberg et al., 2005). High costs, e.g. £905 million/annum in the UK, are mostly attributed to readmission and prolonged length of stay (Stewart et al., 2002), which have been linked to patients receiving sub-optimal care (Lenzen et al., 2005, de Groote et al., 2007). High readmission rates may be related to patients’ inability to initiate and maintain self-care that would avoid unnecessary deterioration or to seek prompt attention when they have deteriorating symptoms (Patel et al., 2007). Despite findings that point to the patients’ inability to maintain self-care, it is noteworthy that to undertake self-care activities patients have to overcome many obstacles to manage their heart failure; including gaining information about their diagnosis, treatment plans, how to recognise deterioration in their condition and the implications of these in a manner that they can understand, and have the desire and confidence on which to act (Horowitz et al., 2004). There have been numerous intervention studies but these tend to focus on ‘services’ rather than patients. Self-care and self-management assume that patients have come to terms with their new condition and are in a position to care for this new self. This issue has been recognised and a number of studies have explored, in a more in-depth and qualitative way, how patients perceive themselves and their new situation.

The current study uses an integrative or inclusion review methodology to summarise past empirical and/or theoretical studies irrespective of methodological underpinnings to provide a clearer understanding of a particular phenomenon or problem (Broome, 1993). Whittemore and Knafl (2005) outline a useful framework used for this review. There will always be a degree of subjectivity within this process; however care has been taken to minimise this subjectivity. Variables of interest and a clear sampling frame are essential in providing boundaries to the review process. In this review, the problem identification stage was informed by an explicit philosophical and theoretical perspective (Kirkevold, 1997). This perspective took its’ bearing from phenomenology and hermeneutics (Gadamer, 2004). This methodological openness allowed each paper to be judged on its own merits and to be seen by the review team as neither more nor less, than another manifestation of the phenomena under review. It is the contention of the authors that patients’ views of themselves and their situation will be influential in determining how they live their lives after being diagnosed as having heart failure. Thus only those papers directly related to patients’ experiences of living with heart failure could be included in the review.