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AN EVALUATION OF THE SUITABILITY, READABILITY, QUALITY, AND USEFULNESS OF ONLINE RESOURCES FOR FAMILY CAREGIVERS OF PATIENTS WITH CANCER
Author names and affiliations: Olivia Monton1 St. Mary’s Research Centre
Sylvie Lambert1 St. Mary’s Research Centre
Eric Belzile1 St. Mary’s Research Centre
Dahlal Mohr-Elzeki2 McGill University Health Centre
Corresponding author: Sylvie Lambert
· Online resources for cancer caregivers are not adequate · None of the online resources evaluated had a superior suitability score · Readability exceeded levels considered optimal for understanding of the information
· Overall quality ratings were low · Few of caregivers’ unmet needs were addressed by the resources evaluated
Objective: Evaluate the suitability, readability, quality, and usefulness of publicly available online resources for cancer caregivers.
Methods: Resources identified through a Google search and environmental scan were evaluated using the Suitability Assessment of Materials (SAM), an online readability text analysis tool, the DISCERN (quality), and caregivers' unmet needs checklist (usefulness). Descriptive analyses and cluster analysis to identify the group of resources with the highest SAM and DISCERN scores were performed.
Results: 55 resources were evaluated. The suitability of 48/55 resources were categorized as adequate (SAM scores 40-69), with no resources ranking in the superior category (SAM scores > 70%). The readability of 51/55 (93%) resources exceeded 9th grade reading level. The mean quality score as a percentage was 49% (SD 11.5). On average resources addressed 9.9/33 unmet needs (SD=5.8). A high-quality cluster was identified and included 15 (27%) websites.
Conclusion: Online resources for cancer caregivers are not optimal in terms of their suitability, readability, quality, and usefulness. The highest ranked resources include, Cancer Council Australia’s booklet, Caring for Someone with Cancer, and the American Cancer Society’s webpages, Caregivers and Families.
Practice Implications: Study findings will allow healthcare professionals to better address cancer caregivers’ needs by recommending the most optimal resources.
Key words: cancer, caregiving, caregiver, information needs, information
Family caregivers are intricately involved in the illness experience of patients diagnosed with cancer,
assuming a number of roles and responsibilities that are key in the patients’ recovery . In addition to tasks of
daily living, cancer caregivers are often required to manage and coordinate medical care and appointments, with
little to no formal training, and provide emotional support to their family members throughout the illness
The increased demands placed on caregivers can have negative consequences on their overall health and
well-being, with the physical, financial, and psychological impact of caregiving playing a large role . To
reduce the burden on caregivers, supportive care, including emotional support, social support, guidance on
symptom and side effect management, and access to high quality information, has been recommended .
However, many supportive care needs, including access to high quality information, remain unmet [5-6].
As internet use continues to grow worldwide, there has been a shift in the acquisition of health
information from print resources to online resources as the primary form of health information . National and
community-based organizations, accredited universities, and major cancer centers have followed the trends and
have made online resources, in the form of webpages, online booklets, and online fact sheets, available to the
public. Though some patients and caregivers retrieve health information from patient resource librarians, most
begin by searching for resources using popular online search engines, usually without guidance from healthcare
professionals [7, 8]. However, latitudinal diversity gradient is not ideal, because the quality and accuracy web-based information
retrieved from online search engines vary. Search ranking algorithms are not available to the public, and could
prioritize keyword usage, website structure, and website speed, over quality and usefulness of the resource.