Information needs of patients and carers following stroke

Garrett, Dawne; Cowdell, Fiona

doi:10.7748/nop2005.09.17.6.14.c2386

Cited by 46 publications

(64 citation statements)

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“…30,45 Evidence, however, that people with aphasia post stroke value written media is lacking. People with aphasia have frequently been excluded from stroke education research 35,[45][46][47][48][49] ; in some cases researchers have not reported whether people with aphasia participated.…”

Section: Participantsmentioning

confidence: 99%

“…The desires of people with aphasia, however, to receive this information are not well documented in the general stroke education literature, as much of the research on providing health information to stroke patients has excluded people with aphasia. 35,[45][46][47][48][49] Several participants also spontaneously commented that written stroke and aphasia information was only important if it was provided in an appropriate format. The need to develop appropriately formatted written health information for people with aphasia has previously been identifi ed in the literature.…”

Section: Did Participants Consider It Important For Their Signifi Canmentioning

confidence: 99%

“…These fi ndings support professional opinion documented in the literature that is it preferable to provide health information in differing media over time. 32,39,49,[86][87][88] …”

Section: Acknowledgmentsmentioning

confidence: 99%

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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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Section: Participantsmentioning

confidence: 99%

Section: Did Participants Consider It Important For Their Signifi Canmentioning

confidence: 99%

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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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“…Difficulties arise because family members do not necessarily recognise themselves as carers, especially in the early stages following a stroke [50,51]. Information needs of families and carers are similar not only to each other but to those of patients [46]. Improving family support may improve the efficacy of treatments [48].…”

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].…”

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

confidence: 99%

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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Communicating Information to Families of Polytrauma Patients: A Narrative Literature Review

Friedemann-Sánchez¹,

Griffin²,

Rettmann³

et al. 2008

Rehabilitation Nursing

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Family caregivers of U.S. servicemembers with polytraumatic injuries (injuries to multiple body systems) need support and information to care for their family members. Providing information to patients' families may reduce stress and increase coping abilities. Because the field of polytrauma research is new and evidence is lacking, providers rely on traumatic brain injury (TBI) research to guide their practice. This article presents a narrative literature review on the information needs of families of patients with TBI. It summarizes the types of needed information, the most appropriate time to provide information, and the best approaches for providing information. Future research on information needs is critical if polytrauma rehabilitation providers are to effectively support families in their caregiving roles. Such research likely will benefit caregivers of patients with polytrauma who acquire their injuries as civilians, as well. Research gaps are identified with regard to the information needs of families of patients with TBI; these gaps also are applicable to polytrauma caregivers. Additional research areas are highlighted in light of the new polytrauma population.

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Information needs of patients and carers following stroke

Cited by 46 publications

References 0 publications

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

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

Communicating Information to Families of Polytrauma Patients: A Narrative Literature Review

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