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 decisionmaking
[4]. Furthermore, education has an important role in
secondary stroke prevention and facilitating successful selfmanagement
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?’’