Review
Educational needs of patients with a stroke and their caregivers: A systematic review of the literature

https://doi.org/10.1016/j.pec.2010.07.046Get rights and content

Abstract

Objective

To systematically review the research on stroke patients’ and caregivers’ educational needs.

Methods

A search of the literature prior to and including the year January 2009 was conducted using Medline, CINAHL, EMBASE, PsychINFO and the Cochrane Library, yielding 959 articles. Of these, 21 studies were included in the review.

Results

Stroke patients and caregivers reported many and diverse educational needs, which often were not met. The educational needs of stroke patients and caregivers concerned knowledge about the clinical aspects of stroke, prevention, treatment and functional recovery. The most commonly reported needs of caregivers involved patients’ moving and lifting, exercises, psychological changes and nutritional issues. Patients and caregivers wanted information that was tailored to their situation.

Conclusion

Patients and caregivers have many unmet educational needs. The findings call for improved education of patients and caregivers on various issues that are specific to the various recovery phases after stroke.

Practice implications

The findings of this review can be used to develop educational interventions for stroke patients and caregivers. Further research is needed to investigate the feasibility and effects of educational interventions and whether they meet the educational needs of patients and caregivers.

Introduction

Stroke is the most important cause of severe and long-term disability in developed countries [1]. It is estimated that the incidence of stroke in the Dutch population will increase 17% from 2010 to 2020 [2]. Patients with stroke face serious health problems not only in the acute phase, but also in the long-term or rehabilitation phase and the chronic phases. Providing patients and caregivers with good education and information concerning stroke recovery is an important aspect of caring for stroke patients [3]. Education provides support to people by providing an understanding of their illness and assistance with decision-making [4]. Furthermore, education has an important role in secondary stroke prevention and facilitating successful self-management of this chronic disease [5]. A lack of education for patients and caregivers can lead to misconceptions, anxiety, fear, poor health status and emotional problems like depression [6]. A recent study showed that the lack of information is a key factor that prevents many European caregivers from adequately accessing support services. This problem is especially true for isolated caregivers who are growing in number in Europe [7].

There is a difference between patient information and patient education. According to the taxonomy of the Nursing Interventions Classification, patient information concerns facilitating communication about health care, whereas patient education consists of interventions that facilitate learning for individual patients and caregivers, families and groups or communities [8]. This review focuses on patient education, which begins providing factual information to patients and caregivers but also includes the interpretation and integration of information in such a manner as to bring about attitude or behavior changes that benefit a person's health status [9]. A recent Cochrane review presents evidence that information improves patients’ and caregivers’ knowledge concerning stroke, increases satisfaction and leads to lower depression scores in patients; however, such information does not appear to reduce the number of patients with anxiety or depression, nor does it appear to influence caregiver mood, satisfaction or death [3]. These findings may be due to the methodological differences of the reviewed studies, which covered a broad range of interventions. Also, the interventions were not tailored to patient or caregiver needs [3]. Studies have consistently demonstrated that many stroke patients and their families express a lack of understanding and a desire for further knowledge about the causes and the consequences of stroke, about secondary preventive measures and about the availability of governmental support agencies and informal support groups. The available evidence suggests that the currently used methods of providing information to stroke patients and caregivers are ineffective and need improvement [6].

Given this background, the objective of this review was to provide an overview of patients’ and caregivers’ educational needs throughout the different phases following stroke. Our research question was: “What are the educational needs of stroke patients and their caregivers during the different phases following the stroke?”

Section snippets

Design

The literature was systematically reviewed following the method described by Grimshaw et al. [10] and following the PRISMA statement for reporting systematic reviews [11].

Search strategy

Medline, CINAHL, Embase, PsychINFO and the Cochrane Library were searched for entries prior to and including the year January 2009. When the keyword was a MeSH term, we used the MeSH term. The following keywords were used: stroke (MeSH) and/or cerebrovascular accident (MeSH), patients (MeSH) and/or caregivers (MeSH) in various

Educational needs of patients

Five studies investigated the educational needs of patients [14], [15], [26], [28], [29] (Table 2). Choi-Kwon et al. [26] studied the educational needs of patients in the acute phase of stroke and compared these needs to the perceptions of health care professionals. The educational needs of patients differed considerably from the perceptions of professionals. Compared with doctors, patients viewed the topics of possibility of cure with medical treatment, stress management, general medical

Discussion

The findings of this review demonstrate that stroke patients and their caregivers have numerous and diverse educational needs, many of which are unmet. Both patients and caregivers need information concerning the stroke, the causes, symptoms and treatment of stroke [14], [16], [17], [20], [23], [24], [25], [26], [28], [29] and the recovery from stroke [14], [15], [23], [29], [30], [32], [33]. Caregivers primarily identified educational needs about physical care, moving and lifting, exercises

Conflict of interest

The authors have no conflict of interest.

Role of funding

The authors did not receive any funding for conducting this systematic review or for the preparation of this manuscript.

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