Abstract

Published reports indicate stroke survivors and their caregivers have a need for documentation of relevant patient education. In this study, based in the Netherlands, a group of stroke patients and their caregivers provided feedback on their experiences using print materials about strokes and information given by health care professionals. Materials could be provided in writing, more quickly, and with more co-ordination amongst the various disciplines. Background: Stroke survivors and their caregivers require informational support during the recovery process. However, published literature indicates this need is currently not being met. To resolve this issue, consideration must be paid to the type of information and how it is provided. A post-stroke guide was created as one means of information provision. This study, based in the Netherlands, investigates how this information guide and information provided by health care professionals are perceived by patients and caregivers.

Methods: In addition to the usual communication with health care professionals, stroke patients and their caregivers were provided with stroke-related documentation three months after their stroke and asked to participate in the study twelve months later. A total of 60 patients and caregivers responded to a structured telephone interview. Also interviewed were their health care providers. Measures were obtained for both the actual ways and amounts in which information was provided and the perceived ways and amounts it was thought to have been received.

Results: About half the patients and caregivers desired that information be provided once or twice, with the remainder wanting the provision of more recurrent information. Caregivers and patients found the ways in which information was provided to be satisfactory and that content was equivalent to what they needed. The various health care specialities (e.g., general practitioners, neurologists and physiotherapists) that delivered this content were the preferred source by patients and caregivers. Half the stroke survivors and caregivers would have liked to be informed about any patient advocacy organizations. In addition, caregivers and stroke survivors expressed a desire that information be provided in a more timely manner (e.g., within 24 hours), that written information such as the documentation created for this study be routinely distributed, and that information provision be better co-ordinated among the various health care professional specialities.

Conclusion: Health care professionals must be aware of their patients' needs for information relevant to their condition. In addition to communicating with their patients information should be provided in print, consistently and in a timely manner. More co-ordination amongst the various sources, therefore, is required. Future research should move towards measuring improved health outcomes in relation to information support interventions.

Reference: Wachters-Kaufmann, C, Schuling, J, The, H, Meyboom-de Jong, B. "Actual and desired information provision after a stroke." Patient Education and Counseling, 2005, 56(2): 211-7.