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  • br Misinformation and misunderstanding can


    Misinformation and misunderstanding can have far reaching effects on the overall health and wellbeing of cancer caregivers, including depression, anxiety, emotional distress and increased vulnerability [4].
    The aims of this study were to: (1) Determine whether online resources regarding cancer caregiving retrieved through a Google search and complemented by an environmental scan, are generally suitable, readable, of high quality, and useful for cancer caregivers; (2) Examine differences in assessment measurement scores according to selected variables; and (3) Identify those resources that are most suitable and of the highest quality.
    2. Methods
    2.1 Sample: Identification of Websites
    To replicate how cancer caregivers might search for information online, a librarian searched the Patient Education Network Collection Database at a teaching-hospital in Montreal to identify commonly searched keywords and phrases using Google Analytics. Based on the findings of this search, seven combinations of search terms were outlined. As Google is currently the most frequently used search engine it U 46619 was used in this study [9]. The Google search was conducted on November 1, 2018. The search included various Google locales: Canada, the United States, Australia, Ireland, and the United Kingdom (see supplementary material, Appendix A, Table A.1. for Google search details). As per other website content analyses, the first two pages of results (i.e. 20 resources) were included, accounting for 95% of search traffic [7, 10, 11]. All browsing history, cookies, and cache files were deleted prior to running the searches to ensure that the retrieval of Uniform Resource Locators (URLs) was not affected by our search history and existing preferences.
    Resources were included if they were freely available; addressed the caregiver directly or the caregiver and patient as equal targets; were cancer specific; provided detailed information on the caregiving experience; and were in the form of webpages, short online booklets including pamphlets and brochures,and online fact sheets. Different age versions of the same resource were included if they appeared through the Google Search. Resources in the form of news articles, online magazines, questionnaires, blogs, testimonials, videos, and journal articles; those that were mainly advertisements; targeted end-of-life; and for parents of children with cancer were excluded. In the interest of feasibility, books and podcasts were also excluded. No time limit was used.
    2.1.2 Environmental Scan
    The Google search was complemented by an Environmental Scan. A Patient Resource Librarian at a teaching-hospital in Montreal conducted an online search to identify resources for cancer caregivers published by national and community-based organizations and associations, accredited universities, and major cancer centers. The librarian identified two concepts, “cancer” and “caregiving”, and developed a list of synonyms and associated terms (see supplementary material, Appendix A, Table A.2. for Environmental Scan search details),
    which were entered in unique combinations into various patient-specific search engines. The same inclusion/exclusion criteria were applied.
    2.2 Data Collection: Assessment Measures
    Suitability assessments were completed using the Suitability Assessment of Materials (SAM), a validated assessment tool comprised of a 22-item checklist that generates suitability scores by assessing six categories that affect readability and comprehension [12]. The categories include: content, literacy demand, graphics, layout and typography, learning stimulation and motivation, and cultural appropriateness. Each item is rated from 0 = not suitable, to 2 = superior suitability. The total score obtained by adding the item scores is converted to a percentage and interpreted as follows: ≥70-100% is “superior”, 40-69% is “adequate”, and < 40% is “not suitable” (44).
    As part of the SAM, and to generate a more reliable estimate of readability, the average reading grade level across the following, well-known formula was retained: Gunning Fog index, the Simplified Measure of Gobbledygook (SMOG), the Flesch Kincaid Grade level, and the Flesh Reading Ease [13]. Written text was copied and pasted into a word document, using Paste Special function to paste unformatted text. Pictures, graphs, and tables were disregarded. Text following bullet points or numbers was excluded, if stromatolite was not in the form of full sentences. The text was then copied and pasted into the automated readability tool [ and improve.jsp] and the readability scores were calculated.
    Quality assessments were completed using the DISCERN, a standardized 16-item tool with established reliability and validity to evaluate the quality of health information about treatment choices, including self-care [9, 14]. The DISCERN evaluates the reliability of the information and the level of detail provided [9]. Each item was rated from 1 = the quality criterion has not been fulfilled at all, to 5 = the quality criterion has been completely fulfilled, with higher scores reflecting higher quality. Scores for items 1-15 were summed and a percentage was derived on the total possible score of 75. If a resource scored a 1 on item one, item two was omitted and a percentage was derived based on a total possible score of 70. The final DISCERN score is represented as a percentage. Item 16, an ‘intuitive summary’ of responses to items 1-15 was omitted because of its subjective nature.