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information resources about cancer and its management. With the increased availability of resources through online U46619 and the concern that many resources are not currently meeting the recommended standards for readability, there is a strong need for formal evaluation to identify those that are most suitable for cancer caregivers .To our knowledge, this was the first study to evaluate the suitability, readability, quality, and usefulness of the online resources available to cancer caregivers. Key findings from this analysis include: (1) None of the websites had a superior score on the SAM, (2) Readability exceeded levels considered optimal for understanding of the information, (3) Overall quality ratings were low, and (4) Few of caregivers’ unmet needs were addressed by websites.
In terms of suitability (SAM), the majority of resources rated adequate, with no resources achieving a superior score on the SAM. To achieve a superior score, these resources would need to improve their suitability scores in the graphics (e.g., by including appropriate cover graphics, simple line drawings and relevant illustrations throughout the resource, in addition to lists, tables, graphs, and charts), learning stimulation and motivation (e.g., by including interactive components which prompt the reader to solve problems and make choices throughout the text, modeling desired behaviour patterns, and breaking down tasks and behaviours into simple steps), and cultural appropriateness domains (e.g., by ensuring that the concepts and ideas in the text match the logic, language, and experience of the intended audience, and by demonstrating cultural images/examples in realistic and positive ways). Other studies evaluating cancer websites for patients found similar sections of the SAM scored low [19, 20, 21]. The integration of illustrations and animations, incorporation of problem solving and decision-making throughout the resource, and mention of cultural sensitivity would improve caregiver recall and self-efficacy [22, 23].
Given that only one of the resources met the superior cut-off score for readability (5th grade and lower), online information related to cancer caregiving is currently not at the appropriate reading level for the population. It is estimated that less than half of Canadian adults fail to achieve the skill level typically required
for high school completion, which means that a large proportion of Canadians would not be able to comprehend the majority of resources evaluated in this study . The inability to read and comprehend resources available can have negative effects on cancer caregivers’ psychological and physical health, as well as the quality of care ecosystem are able to provide . It should be noted, however, that although online resources are one avenue where caregivers seek information, there do exist other forms of information which were not reviewed in this study. Additionally, there are many supportive care services which promote information sharing and communication between patients, caregivers, and the treatment team, which have been shown to be very useful for cancer caregivers [1,5].
Resource quality was also low, reflecting low reliability and inadequate details on self-care strategies. There was a general lack of details on the sources of information used to compile the publication, which calls into question the accuracy and validation of the information available. Though the majority of resources outlined self-care strategies, many failed to provide details on how each strategy works and propose the benefits and risks of each self-care strategy.
Most resources met less than half of caregivers’ unmet supportive care needs. Resources that fail to address cancer caregivers’ most pressing needs are not useful and may not be used by caregivers. This may be due to a lack of knowledge on the part of national and community-based cancer organizations, accredited universities, and major cancer centers on the unmet supportive care needs of cancer caregivers. These results might also explain why caregivers continue to report unmet information needs .
In this study, different age versions of the same online resource were included if they appeared through the Google Search or Environmental Scan. As such, the 2014 and 2017 editions of Cancer Council Australia’s booklet, Caring for Someone with Cancer were included in this study and both editions were ranked in the top
3. Interestingly, the 2017 Edition scored slightly higher than the 2014 Edition in terms of the SAM and the unmet needs assessment, demonstrating that the authors have made minor but important changes which have made the booklet more suitable and useful for cancer caregivers. Given the ease with which online information can be updated, authors can and should make changes to online resources in an attempt to improve resource suitability, readability, quality, and usefulness.