Original article
Fear of recurrence and beliefs about preventing recurrence in persons who have suffered a stroke

https://doi.org/10.1016/j.jpsychores.2006.09.006Get rights and content

Abstract

Objectives

The aim of this study was to investigate fear of recurrent stroke and beliefs about its causes and prevention.

Methods

Eighty-nine patients participated 1 month following stroke and 81 were followed up at 9 months. Interviews addressed fears and beliefs about stroke, causes, recurrence and prevention by using closed and open-ended questions. Responses were subject to quantitative and qualitative analysis, respectively.

Results

Fear of recurrence was common. Profound disability was a particularly feared outcome. Participants were knowledgeable about causes. However, causal controllability ratings were low. Some reported concern about preventative strategies (e.g., difficulty stopping smoking). Many reported idiosyncratic beliefs (e.g., avoiding overexertion) or fatalistic ideas about strokes (e.g., ‘nothing’ can prevent them). Similar quantitative results were obtained at follow-up.

Conclusions

Many patients fear stroke recurrence. They lack a sense of control over causes and have fears associated with idiosyncratic and fatalistic beliefs. There is a need to elicit and address individuals' own fears and beliefs about stroke before providing evidence-based secondary prevention recommendations.

Introduction

Stroke is a major medical illness and one in five persons will die within a month of having a stroke [1]. For survivors, the risk of recurrence is initially high, 18% of survivors of minor stroke suffered a recurrence within 3 months [2], and those who survive to 1 month run a 10% annual risk of recurrence [3]. Although secondary prevention is therefore a priority [4], its success has been limited [5]. Despite the uncertain health of patients with stroke, research has not specifically investigated their fear of recurrence.

The beliefs of stroke patients about the causes of stroke are poorly understood. It is unclear whether patients with stroke tend to attribute their stroke only to medical and lifestyle risk factors or if, like patients with cardiac diseases, they also believe that psychosocial problems contribute to their illness [6], [7]. Although we know that stroke patients want more information about prevention [8], we lack understanding of their beliefs in the controllability of risk factors that they are aware of. The belief that risk factors are poorly controlled may increase fear and anxiety [9].

Previous research into education has taken a predominantly medically directive approach to improving patients' knowledge of stroke and its causes. Individuals with stroke express a need for further information [8], [10], [11]. However, while the provision of medically accurate information may improve knowledge, it has not been found to improve mood or perceived health status [12]. Patients' own perspectives about stroke illness and recovery are important as they may influence their emotional adjustment or adherence to medical recommendations [10], [13], [14], [15].

In this study we aimed to investigate fear of recurrence and beliefs about causes and prevention of recurrence in persons who had suffered a stroke.

Section snippets

Participants

The study was conducted in the Western General Hospital, Edinburgh, a university teaching hospital with a specialist stroke unit where staff followed current patient education guidelines, including provision of leaflets on discharge [16]. Participants were patients who had been admitted to hospital with a definite diagnosis of stroke. Only patients who survived 1 month and were free of substantial cognitive impairment or aphasia were included.

Procedure

Participants were recruited between August 2000 and

Stage 1

One hundred twenty-one potential participants were recruited and referred. Reasons for exclusion at this stage were recorded until May 2001 and the main ones were aphasia (70 of 163 excluded) or not diagnosed with a ‘definite’ stroke (30 of 163 excluded).

Stage 2

At 1 month poststroke 1 referred patient had died, 1 had moved without leaving a forwarding address, 4 were too unwell, 18 failed the cognitive screen, 6 declined, and 2 were too distressed to complete interviews. The final sample consisted of

Main findings

Fear of recurrent stroke was found to be highly prevalent and more than half of participants reported worrying about ‘having another.’ Our qualitative findings highlighted that patients' fear of recurrence was often gained vicariously from family members, close friends or other patients in hospital. Also, that profound physical and communicative disability, are particularly feared outcomes.

Our participants, who were treated in a specialist stroke unit and provided with patient education

Conclusions

Many patients fear a recurrent stroke. They lack a sense of control over its causes and have fears associated with idiosyncratic and fatalistic beliefs. There is a need to elicit and address individuals' own fears and beliefs about stroke before providing information about evidence-based secondary prevention.

Acknowledgements

This research was conducted within the School of Molecular and Clinical Medicine, University of Edinburgh. The study was conducted as part of a UK MRC studentship (ET). We would like to thank our participants, their clinicians and carers for their participation.

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