Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals

“…The need to provide health information to family members and carers has been previously documented. 20,40,45,47,61 Family members of people with aphasia have rated information about aphasia as their most important informational need post stroke, followed by psychosocial support and hopefulness. 62 It is important that health professionals routinely provide written stroke and aphasia information to signifi cant others.…”

Section: Did Participants Consider It Important For Their Signifi Canmentioning

confidence: 99%

Do People With Aphasia Want Written Stroke and Aphasia Information? A Verbal Survey Exploring Preferences for When and How to Provide Stroke and Aphasia Information

Rose

Worrall

Hickson

et al. 2010

Topics in Stroke Rehabilitation

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A phasia can be defined as "the loss or impairment of language function." 1(p49) It is a multimodality disorder that manifests in difficulties with speaking, reading, and writing.1 Various studies have investigated the prevalence of aphasia resulting from stroke, estimating between 10% to 18% of stroke survivors will have aphasia long term.2-4 Given the language diffi culties encountered by people with aphasia, there is a growing recognition of the need to produce aphasia-friendly written health information.5-9 Aphasia-friendly information incorporates many of the recommendations for how best to format written information for stroke patients 10,11 but to an exaggerated degree. 12Preliminary research found that people with aphasia comprehended more health information when standard health information brochures and booklets were reformatted to contain simple words and short sentences, larger font, white space, and pictures. 6 Before further pursuing research in the area of aphasia-friendly text formatting, it is fundamental to determine whether people with aphasia wish to receive health information in written formats. "Virtually every variety of aphasia entails some diffi culty in oral reading or reading comprehension." 13(p60) Given this, and the wide variety of media available for patient education (eg, DVDs, Websites, verbal information), it should not be assumed that people with aphasia desire to receive health information in a written Purpose: Written health information can be better comprehended by people with aphasia if it is provided in an aphasiafriendly format. However, before pursuing research in the area of text-formatting for people with aphasia, it must be determined whether people with aphasia consider it helpful to receive health information in the written media. This study, therefore, aimed to determine the following: whether people with aphasia consider it important to receive written stroke and aphasia information; when people with aphasia prefer to receive this information; and what their preferences are for health information media. Method: Surveys were administered in a face-to-face interview with 40 adults with aphasia. Participants were purposefully selected using maximum variation sampling for a variety of variables including aphasia severity, reading ability, and time post stroke. Results: Participants thought it important to receive written information about both stroke and aphasia. They considered it helpful to receive written information at several stages post stroke, particularly from 1 month onwards. The largest proportion (97%) of participants identifi ed 6 months post stroke as the most helpful time to receive this information. Written information was the most preferred media at participants' present time post stroke (M = 39 months; range, 2-178 months). Videos/DVDs were the most preferred media during the 6 months immediately following the stroke. Conclusion: Despite reading and language diffi culties, participants considered written information to be important, hence people wi...

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“…Despite well-documented benefits of providing written health information, stroke patients with SLD do not necessarily receive the information they require from health professionals, and information may be too complex [32,34,36,41,42], particularly among stroke patients with aphasia [43]. Information provision should be integral to care following a stroke, especially information on the services and benefits available to PCF, in addition to strategies for managing practically with their changed circumstances [34].…”

Section: The Information Needs Of Patients With Speech and Language Dmentioning

confidence: 99%

“…The consequences may be emotional and behavioural, e.g., depression or memory loss [26,33,38,41], as well as physical, e.g., incontinence [33,38,41]. Information on medications and treatments is frequently needed, including details on the rehabilitation process [25,26,33,34,36,38,41,46,48,49,53]. An indication on the prognosis is often required to gauge potential recovery [36,38,46,48,50].…”

Section: The Information Needs Of Patients With Speech and Language Dmentioning

confidence: 99%

“…PCF wish to know about the stroke itself, the causes and risk factors [25,26,33,34,36,38,39,41,46,47,49,50,52], the risks and prevention of stroke recurrence [25,33,34,36,38,39,41,46,53], as well as the consequences of the stroke on the body, e.g., the visual field and bladder function, and the management of such effects [25,26,33,34,36,38,39,41,46,48,49,52,53]. The consequences may be emotional and behavioural, e.g., depression or memory loss [26,33,38,41], as well as physical, e.g., incontinence [33,38,41]. Information on medications and treatments is frequently needed, including details on the rehabilitation process [25,26,33,34,36,…”

Section: The Information Needs Of Patients With Speech and Language Dmentioning

confidence: 99%

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An assessment of the quality of information on stroke and speech and language difficulty web sites

Surman

Bath

2013

Journal of Information Science

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Online healthcare information is used by patients, their carers and families (PCF) experiencing speech and language difficulties (SLD) after a stroke. This information may be of variable quality. Tools have been designed to assess the risk of poor information quality, evaluating both generic and specific concepts, yet none focus on stroke. The readability of information is also an issue when communication disorders are in consideration. The study investigated the quality and readability of information on 51 web sites pertaining to SLD following a stroke. These were assessed using two generic evaluation tools (DISCERN and the HON Code), readability tests (Flesch Reading Ease and Flesch-Kincaid Grade Level), and a specifically designed Stroke Tool based on the reported information needs of stroke PCF experiencing SLD. The tools themselves were then evaluated for their feasibility, reliability and validity. In common with previous studies, the information quality of the selected web sites was found to be extremely variable with only 59% achieving a score of 50% or more using HON, only 37% using DISCERN, and 49% using the Stroke Tool. Readability is generally very poor with only 6% of web sites scoring below the recommended grade 7. The tools did not correlate well, suggesting that they measure different domains of quality. The Internet may be a valuable resource for stroke PCF however the variable quality of information means that cautious use is recommended. The readability of information is a more serious issue that needs addressing by web site developers.

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Educational needs of stroke survivors and their family members, as perceived by themselves and by health professionals

Cited by 86 publications

References 20 publications

Patients' Perceptions of Hospital Discharge Informational Content

Patients' Perceptions of Hospital Discharge Informational Content

Do People With Aphasia Want Written Stroke and Aphasia Information? A Verbal Survey Exploring Preferences for When and How to Provide Stroke and Aphasia Information

An assessment of the quality of information on stroke and speech and language difficulty web sites

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