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People with stroke and their caregivers experience numerous information needs; internet-based resources may offer cost-effective ways to improve access to information about this condition and its management, including the availability of resources and support. The quality of online health information is, therefore, an important consideration for both developers and consumers of these online resources.
This study aims to map and evaluate the content, readability, understandability, design, and quality characteristics of freely available online information resources (ie, websites) that empower people with stroke and their caregivers with information and self-help strategies poststroke.
This descriptive review will follow the five systematic and rigorous methodological steps that are recommended for scoping reviews, which include the following: (1) identifying the research question, (2) identifying relevant studies, (3) selecting the studies, (4) charting the data, and (5) collating, summarizing, and reporting the results. Data will then be synthesized and analyzed thematically.
As of February 2021, the scoping review is in the data extraction stage. Data will be synthesized, and the first results are expected to be submitted for publication in an open-access peer-reviewed journal in August 2021. In addition, we will develop an accessible summary of the results for stakeholder meetings. Ethical approval is not required for this review, as it will only include publicly available information.
This study is novel and will evaluate the typology, content, and design-related criteria, including accessibility, aesthetics, navigability, interactivity, privacy, and data protection, of online information resources for stroke. The review will be limited to online resources published in English.
DERR1-10.2196/23174
Online, internet, or web-based stroke resources could be beneficial for people with stroke and their caregivers, specifically for those with information and support needs living in the community who have limited access to stroke care and rehabilitation. Apart from the benefit of easy access, users or consumers of these online resources may still experience unmet needs if other quality criteria, such as accuracy and readability, are not in place [
Stroke is the second most common cause of death [
Other than rehabilitation interventions, stroke patients and caregivers, globally, experience numerous diverse information needs after the incident, many of which are not met [
The internet, or the World Wide Web, is increasingly being used for health-related inquiries by the general public [
Health literacy has been defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and the services needed to make appropriate health decisions” [
Previous studies evaluating online resources for stroke found that the quality, content, and readability of these websites were highly variable [
This study will, therefore, aim to map and evaluate freely available, current, online health information resources (ie, websites) that can empower people with stroke and their caregivers with information and self-help strategies poststroke. This comprehensive evaluation will review the content, readability, understandability, design, and quality characteristics of these online stroke health information resources.
When searching for educational information on stroke, information sources such as websites and social media pages are regularly accessed and will influence the knowledge and behavior of people with stroke and their caregivers. The search for online guidance has become a preferred strategy for many individuals globally, even more so during the COVID-19 pandemic, where fear, social distancing restrictions, and lack of accessible health services frequently influence their health-seeking behavior. Online resources reflect a new and current data source available to people with stroke and their caregivers in their search for information postincident. Following the rigorous approach of a scoping review framework will allow us to search, locate, and evaluate the contents and quality of these novel data sources in a systematic manner. The review will, therefore, be conducted according to a methodological framework for scoping reviews [
A scoping review approach will be used to locate, collate, and evaluate all relevant information on freely available online health information resources (ie, websites) that seek to empower people with stroke and their caregivers with information and self-help strategies poststroke. The reviewers will follow the guidelines of a scoping review methodological framework using a five-step process recommended by Levac et al [
The initial stage of this review provides a roadmap for the entire process, as it clearly defines the breadth and depth of the scoping review process. The main constructs of the scoping review include synthesis of evidence relating to the information content, readability, understandability, and design characteristics of freely available online health information resources for stroke globally.
Therefore, the primary objectives of this scoping review will be to conduct the following:
Systematically search, summarize, and synthesize existing literature on the various freely available websites for stroke globally.
Describe these online resources in terms of typology (ie, type of resource) and geographic location.
Describe the information content in terms of its currency and credibility (ie, authoritativeness and trustworthiness).
Describe the design characteristics of these online health information resources in terms of readability, understandability, accessibility, aesthetics, navigability, interactivity, privacy, and data protection.
Identify exemplars of freely available websites for stroke globally. These exemplars may offer valuable insights and design elements to emulate for developers of new online resources for people with stroke and their caregivers.
A structured online search will be conducted via Google by the primary researcher (GIJ) to obtain all freely accessible online educational resources and tools designed for people with stroke and their caregivers. Every step of the process will be recorded. In addition, websites of international organizations like the World Stroke Organization [
The search will be conducted under the
Exclusion criteria include duplicate webpages, commercial sites or advertisements, commentary type webpages, and webpages that do not contain any relevant information about stroke or its management. Peer-reviewed primary literature will be excluded because it would likely exceed the comprehension and readability level of most patients and the general public. It is also assumed that most patients may not have access to scientific literature. Specific content for medical professionals will be excluded because of its intended target audience.
One reviewer (GIJ) will screen the results generated via the Google search and apply the selection criteria to identify relevant websites. When in doubt, a final determination will be made through discussion with a second reviewer (TC) until consensus has been reached.
Data will be extracted and captured on a custom Microsoft Excel spreadsheet. Extracted data items may include descriptions, content-related categories, and design-related categories, including but not restricted to typology, geographic location, credibility, and understandability. Definitions and descriptions of content and design characteristics are provided in
Definitions of quality criteria of online resources.
Criterion | Definition |
Accessibility | Refers to “whether or not a site can be easily accessed. Widely used indicators included whether: a site is available, the links are active, special software is required for viewing the content, website contact information is clearly presented, and the site attends to users with disabilities” [ |
Aesthetics | Refers to “the look and feel of a site...major indicators are site layout (e.g., whether the layout is easy-to-follow, attractive, clear, simple, clean, and appealing), the use of images (e.g., whether they are relevant, appropriate, useful, and of high quality), and the use of headings (whether headings and subheadings are used)” [ |
Currency | Refers to “whether or not the content is up-to-date,” usually identified by the publication date and the time of the last update [ |
Credibility | Refers to “two components, authoritativeness and trustworthiness” [ |
Interactivity | Refers to the “capacity of a site to allow users to communicate with the system or with other users...including whether the site offers internal search functions, supports user input (e.g., commenting on content) and information exchange (e.g., chat rooms and links to social media), provides multimedia content, and personalizes content based on consumer characteristics” [ |
Navigability | Refers to “how easily a consumer can move around within a site...and includes whether the information architecture of a site is logical, supports easy navigation, and provides a site map” [ |
Privacy and data protection | Refers to “whether a site respects the privacy and confidentiality of personal data submitted by visitors.” Most studies used the indicator outlined in HONcode’s (Health On the Net Foundation Code of Conduct) privacy criterion; that is, the presence of policy statements describing what information is collected and how it is used—for example, whether users were given the opportunity to opt out of sharing personal information [ |
Readability | Refers to “whether or not the content of a site is understandable for general consumers without medical background” [ |
Cultural contextualization | For this review, the investigators will identify whether any of the online resources provide evidence of and/or information on aspects that were designed or adapted to make it culturally appropriate for diverse users. Some of the cultural indicators may include surface elements (eg, formats, pictures, and language) [ |
As the field of digital health is expanding, so is the plethora of evaluation tools and criteria checklists available to assess the quality of online resources and webpages. The researcher is interested in whether the information content included in these online stroke information resources is comprehensive, current, and evidence based, as well as whether appropriate and accessible formats are being used. The description of the contents of each data source may include currency and credibility of the information, while design characteristics may include readability, understandability, accessibility, aesthetics, navigability, interactivity, privacy, and data protection. Data items will be extracted and summarized narratively and, where available, appraisal tools will be used. Selection of the appraisal tool will be determined by the specific criteria or characteristics to be appraised.
Quality criteria and indicators to assess online information sources and resources, as described by Zhang et al [
Characteristics and criteria | Examples of indicators | Validated evaluation tools (where applicable) | |||
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Currency | Publication date |
N/Aa | ||
Credibility (authoritativeness and trustworthiness) | Authorship |
HONcode (Health On the Net Foundation Code of Conduct) conformity developed by the Health On the Net Foundation |
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Readability | Site content should be understandable for general consumers without medical background | Patient Education Materials Assessment Tool | ||
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Accessibility | Operational: sites available, no dead links, and browser independent |
N/A | ||
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Aesthetics | Site layout |
N/A | ||
|
Navigability | Navigation structure: information presented in a logical order and easy navigation between links |
N/A | ||
|
Interactivity | Information exchange (eg, forums and emails) |
N/A | ||
|
Privacy and data protection | Policy on the collection and use of personal data | N/A |
aN/A: not applicable; there were no validated evaluation tools for this criterion.
One reviewer (GIJ) will extract all the information related to content and design characteristics of stroke websites and will cross-check the entries in a reviewer-developed Microsoft Excel data sheet. A random selection of 10% of the extracted data will be checked by a second reviewer (TC). After comparison, any discrepancies will be resolved via discussion between the reviewers; if necessary, a third reviewer (KG) will be consulted. The extracted data will be summarized narratively using text and tables; where appropriate, thematic content analysis will be employed.
As of February 2021, the scoping review is in the data extraction stage. Data will be synthesized, and the first results are expected to be submitted for publication in an open-access peer-reviewed journal in August 2021. We will develop an accessible summary of the results for stakeholder meetings. Ethical approval is not required for this scoping review, as it will only include publicly available information or data. Data generated from this review will be made available upon reasonable request.
Only English-language websites will be reviewed in this study. This may result in missing potentially good-quality resources available in other languages as well as excluding end users with limited English proficiency. Even though Google is one of the most common and well-known search engines available internationally, limiting the search to only this search engine may be a limitation of our study. The use of computer-based analysis of readability may overestimate the difficult level of online information on websites, but more than one readability index will be used in this review to provide a broader interpretation of this quality criterion.
This review will attempt to map and evaluate the quality of the content, readability, and design of current, freely available, online health information resources (ie, websites) that empower people with stroke and their caregivers with information and self-help strategies poststroke, globally. Comprehensively mapping existing resources will assist developers with gaining insight into gaps across a range of quality criteria. The results of this review will be used to identify exemplar online health information resources of good quality and which specific aspects may need to be improved. An evaluation of these exemplar online stroke resources by target users will be incorporated in a follow-up study to validate the obtained results of the review from the user’s perspective. The exemplar online stroke resources, identified during the review, will also inform the design of a South African–specific stroke-related digital health intervention. The envisaged co-design of the new contextually appropriate digital health intervention will, therefore, be informed by explicit quality criteria, international exemplar information resources, and, finally, input from end users, including people with stroke, their caregivers, and health care professionals involved in stroke care in South Africa.
disability-adjusted life year
National Research Foundation
The financial assistance of the National Research Foundation (NRF) toward this research is hereby acknowledged. Opinions expressed and conclusions arrived at are those of the authors and are not necessarily to be attributed to the NRF.
GIJ drafted and revised the protocol with suggestions from KG and QL, who reviewed the protocol and provided feedback on the draft. GIJ, in consultation with the other authors, constructed the search protocol. TC assisted with data charting and cross-checking of preliminary results. All authors read and approved the final protocol.
None declared.