Actual and desired information provision after a stroke

https://doi.org/10.1016/j.pec.2004.02.012Get rights and content

Abstract

Stroke patients and caregivers have a substantial information need. The study investigates how information was actually provided to stroke patients and caregivers and how they prefer to be informed. The GP, neurologist and physiotherapist are both the actual and desired information providers. The actual and desired information correspond in terms of content, frequency, and method of presentation. However, patients and caregivers prefer to receive information within 24 h and to be informed about, and be given, relevant written information. The information given by the various professional stroke care-providers could be better co-ordinated. The role of the GP as an information provider lagged quite a long way behind. Recommendations for the provision of an improved information system is given. Most of the subjects are relatively young male patients with few disabilities and healthy caregivers. More attention should be paid to encouraging patients and caregivers to actively seek information to supplement the information given by professional stroke care-providers.

Introduction

Underlying the present study is the problem voiced by stroke patients and their caregivers that professional stroke care-providers do not give sufficient information about the stroke and its consequences for daily life. Members of the Dutch association for stroke patients and caregivers, ‘Going on Together’, have expressed such a need. The literature, too, shows that stroke patients and caregivers feel that they are not given sufficient information. Giving timely, adequate, accurate and situation-specific information is recommended as a key component of care provision [1], [2], [3], [4], [5], [6], [7], [8]. Despite this advice, patients and caregivers believe that they are inadequately informed about the stroke, its consequences, and the available support [1], [9], [10], [11], [12], [13], [14], [15], [16], [17], and particularly about the emotional consequences [12], [14], [16], [18], [19]. They receive a minimum of information during the patient’s stay in hospital [15], [16], [20] and are left with unanswered questions up to 2 or 3 years after the stroke. Despite efforts by professional stroke care-providers, the information provision is not geared to the needs of the target group [11], [12], [14], [15], [16], [21], [22], [23]. Providing information to caregivers is also eminently important because of the cognitive disorders, emotional problems, and behavioural changes experienced by the stroke patients in their care, and because of their own anxieties and insecurities. Although caregivers focus on medical information [22], [23], [24], [25], [26], [27], home care [17], [21], [22], [24], [25], [27], [28], [29], and the impact of the stroke on themselves in their role as caregiver [22], [24], [30] both stroke patients and caregivers want more information tailored to their needs.

The literature also shows that patients and caregivers prefer the acting physician to give them the information they need [20], [21], and would like written information to support the verbal information provided [12], [23], [24], [31], [32], [33].

To satisfy the need for written information, ‘Going on Together’ commissioned a Post-stroke Guide, hereafter ‘the Guide’ [34]. Patients and caregivers suggested the topics to be dealt with in the Guide. The production of information materials by professional stroke care-providers, however, does not mean that the need of patients and caregivers is satisfied [22]. The Guide found its way to the target group after a promotional campaign among Association members and professional stroke care-providers. Written information sources such as the Guide function as reference material to supplement verbal information. However, not all stroke patients and caregivers require additional information. The need for verbal and written information depends on the nature and severity of the stroke, but is also determined by the course of the disease and the phase the patient is in. The problems experienced by patients and caregivers are manifold, diverse, and complex [15], [21], [30], [35], and change over time [9], [10], [11], [12], [18], [23], [27].

When stroke patients and caregivers indicate that they have been insufficiently informed, the question arises how the information is provided and how patients and caregivers would like to be informed. The present study provides an insight into actually given and desired information, including the role played by the Guide. Stroke patients and caregivers describe the actual information provision on the basis of their experiences, and the desired information provision on the basis of their needs. The Guide is based on the information needs expressed by patients and caregivers of ‘Going on Together’. It reflects their expectations with regard to written information. The Guide was sent to the subjects included in the present study. Because of the experience that patients and caregivers had with the Guide, it is a part of the actually provided written information.

The research questions are:

  • 1.

    What are the experiences of stroke patients and caregivers with the information actually provided by professional stroke care-providers and other sources of information, including the Guide?

  • 2.

    What type and quantity of information do stroke patients and caregivers require from professional stroke care-providers?

The aim of the study is to use the research outcomes to formulate practical recommendations for the provision of information.

Section snippets

Method

General practitioners in the North of the Netherlands and the stroke unit of University Hospital Groningen enclosed patients with a recent, first, non-haemorrhaging, unilateral stroke as part of CognitiVA, a longitudinal community-based study of cognitive disorders and quality of life after a stroke [36]. Between April 1998 and May 2000, these stroke patients and caregivers (wife or husband, partner, or daughter) received a (free) copy of the Guide from one of the CognitiVA researchers 3 months

Results

Between August and mid-September 2000, 51 patients and 38 caregivers were contacted. Eighteen patients declined to be interviewed for the following reasons: medical problems such as cognitive impairments (aphasia, memory difficulties) and accidents, and admission to a nursing home (N=9); the interview was considered too confronting (N=6); patient deceased (N=2); and vacation (N=1). Eleven caregivers declined to be interviewed for the following reasons: the interview was considered too

Discussion and conclusion

The professional stroke care-provider named by patients and caregivers as the one who gave them the most information was not, in their view, the most important care-provider. The three main professional stroke care-providers for patients and caregivers are the neurologist, the GP, and the physiotherapist, in that order. The physiotherapist provided by far the most information, followed by the neurologist and—quite a long way behind—the GP.

Patients being treated by a rehabilitation specialist

Acknowledgements

We wish to thank Annemarie Visser-Keizer and Marleen Gerritsen for making their research cohort (CognitiVA) available.

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