Parents of children with disability, such as those with impairments, activity limitations, and participation restrictions [1] (eg, autism spectrum disorder [ASD], cerebral palsy, and Down syndrome), have a greater need for support because of the additional responsibilities related to their child’s care [2] than do parents of children with typical development [3-5]. The child’s condition may considerably affect the parents’ routines, priorities, and social network [6]. This may lead to increased stress levels [7] and emotional distress, partly due to insufficient social support [6,8]. Given these constraints, parents of children with disability tend to have greater needs for information and networking [9-11].

When parents receive the initial diagnosis of their child’s disability, they may have difficulty assimilating all the information provided by professionals, especially because of the emotional upheaval they experience [12]. Moreover, they may encounter new challenges (eg, how to bathe a growing child with paraplegia, or how to educate a teenager with cognitive impairment about certain sexually inappropriate behaviors in public) any time, but professionals may not be available at all times to advise them. This is one of the primary reasons why these parents turn to the internet for information [9,10,13,14]. However, considering the individualized profile of each family of children with disability, the information available online does not necessarily meet all their specific needs [15,16].

Such parents also often seek emotional support from other parents who have had a similar experience [9,17]; they believe maintaining a good, supportive social network helps them find tangible solutions to emerging issues as well as receive significant emotional reassurance [18,19]. This sharing of information is important to help them relieve the stress and alleviate the feeling of burden that may be associated with their challenges [15,19-21]. Parents find such networking and interaction as important as finding relevant information on the internet [22]. Although the internet could conceivably offer an opportunity for resourceful networking, to our knowledge, no study has examined this dimension of the use of internet. Moreover, given that most of the information available on the internet is in English, parents who do not read English may not always be able to readily access relevant information.

Finally, little is known about the format and characteristics of existing internet pages that parents of children with disability access. Only 62% of parents pay attention to whether the health care information available on websites is reliable [23], and only half of them consider themselves to be able to accurately assess the quality of the information found online [24]. These findings suggest that parents could blindly use any information found on the internet and might, in the worst case, endanger their child or themselves. Given that safety of the child is important and considerable amounts of knowledge is readily available about the descriptive characteristics that enhance usability of websites [25], it thus appears timely to provide an in-depth portrait of such internet resources.

Therefore, in this study, we aimed to (1) identify existing websites aimed at providing information to parents of children with disability, (2) summarize the content of such websites, and (3) evaluate the quality of information they provide.

This study was conducted in a French-speaking region of Canada, within an integrated knowledge translation framework [26-28]. The study included an advisory committee comprising 2 parents (the knowledge holders) and 2 researchers (the emissaries who have the authority to disseminate this knowledge). The researchers delineated the research question and subsequently discussed the methodology as well as the interpretation of the results to ensure that the project fulfilled the parents’ initial needs (ie, to evaluate the quality of websites they use to access information). The question was brought forward by the parents on the advisory committee (ie, parents of children with disability) who believed that the content on the internet could be improved to address their information needs more adequately.

Accordingly, in the first step of this study, these parents suggested 10 websites in French that they accessed frequently. The following selection criteria were used to select the websites: (i) publicly available, (ii) written in French or in English, and (iii) intended for parents of children with disability, aged between 3 and 12 years (with the exception of one site, “Portail Enfance,” aimed at health professionals and students, but its content was, in our opinion, relevant and usable by parents). Websites presenting information about disabilities with a high prevalence (ie, ASD, cerebral palsy, intellectual disability, and learning disabilities) were first explored [29]. In the second round, websites were identified using common vocabulary search terms (eg, French counterparts of “autism spectrum disorder tips and tools,” and “special needs in cerebral palsy”) on Google. Finally, we also included websites that were found in the resources linked to the previously selected websites that were considered relevant and coherent with our selection criteria. We stopped searching for new websites when the structural, textual, and visual characteristics of the most recent websites identified were similar to at least one of the other already analyzed websites. In all, 42 websites were selected for the analyses.

The data extraction process aimed to collect descriptive characteristics of the websites (Table S1 in Multimedia Appendix 1). Two research assistants first extracted data independently from 10 websites and, after comparing their procedures, they wrote a manual to systematize the data extraction process. Next, the reviewers extracted data from 9 other websites to validate the manual’s documented procedure. Then, the data extraction tasks from the remaining 23 websites were equally distributed between them.

Thereafter, understandability and actionability of the website content were evaluated using the Patient Educational Materials Assessment Tool (PEMAT) [30] available online [31]. According to this tool, “understandability” refers to the ease in understanding what is written with regard to content, word choice and style, use of numbers, organization, layout and design, and use of visual aids. “Actionability” refers to the ease of putting into action the information presented or implementing it in real life. A single trained evaluator completed the evaluation of the selected websites. The evaluation results included both printable and audiovisual material versions. The scoring process was straightforward for all 26 items: for instance, “the material uses active voice” (item #5) or “the material provides a summary” (item #11). One (1) point was assigned if the item was fulfilled and zero (0) point, if not [31]. The COUNTIF function in Microsoft Excel was used to produce the statistics of the PEMAT scores from our extraction table. The minimum PEMAT score required for a website to be qualified as adequately understood and actionable was 70% [31]. Scores higher than 70% were further categorized as follows: 70%-79%, acceptably understandable and actionable; 80%-89%, easily understandable and actionable; and 90%-100%, perfectly understandable and actionable. One of the PEMAT subcriteria, that is, the presence of instructions or examples to explain how to perform calculations if any, was excluded from further analysis because no occurrence was found.

Of the 42 websites selected for the analysis, 39 (93%) contained information mostly in a textual format, whereas 32 (76%) also used a video format. Moreover, 25 (60%) of the 42 websites used visual aids but most did not considerably enrich the textual content (eg, an image of a father holding a book in his hands with his two children in their bed was placed next to a paragraph describing how to help children with sleep disturbance). The information presented in these websites had been reviewed either by professionals or a scientific or advisory committee for only 18 (43%) websites, whereas information was not verified for 8 (19%) websites. Moreover, we found that 19 (45%) of the 42 websites were updated within the last month, 5 (12%) were updated within the last 1-3 months, 5 (12%) were updated within the last 4-6 months, 1 (2%) was updated within the last 7-12 months, and 5 (12%) had not been updated in the previous year. Information about the last update was not determinable for 7 (17%) of all websites studied.

With regard to the type of disability, 20 (48%) of the 42 websites contained information about ASD and 19 (45%) had information about learning disabilities. Behavioral disorders and developmental language disorder were each discussed in 4 (10%) websites. Mental health issues, including anxiety, bipolar disorder, depression, and eating and personality disorders were discussed in 6 (14%) websites. Other disabilities such as cerebral lesion or palsy, Down syndrome, epilepsy, and spina bifida were discussed in 6 (14%) websites.

With regard to the activity domains of the International Classification of Functioning, Disability and Health, 9 domains were examined: learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas; and community, social, and civic life [32]. Most the websites addressed topics related to communication (35/42, 83%), learning and knowledge application (33/42, 79%), and relationships and interactions with others (31/42, 74%). Topics pertaining to community, social, and civic life (9/42, 21%); domestic life (12/42, 29%); and mobility (15/42, 36%) were not as frequently covered in the websites examined.

Most websites examined presented tips and advice (37/42, 88%), explanatory material (35/42, 83%), and references to similar or additional resources (32/42, 76%). Printable documents and testimonies were each found in 23 (55%) websites. Moreover, 14 (33%) websites included workshops; activity ideas for development of specific skills; personalized newsletters; or scientific articles, advertisements, questionnaires, and game platforms. Only 7 (17%) of the 42 websites examined offered networking opportunities such as comment boxes, chat, forums, and a “frequently asked questions” zone.

Based on the PEMAT usability evaluation scoring system, 22 (52%) websites received a global score <70%, whereas the remaining 20 (48%) received a score ≥70% (Table S2 in Multimedia Appendix 2).

In the understandability category, 20 (48%) of the 42 websites (Figure 1) scored <70%, whereas 22 (52%) scored ≥70%. In the actionability category, 27 (64%) websites scored <70%, no website scored between 70% and 79%, 6 (14%) scored between 80% and 89%, and 9 (22%) scored ≥90%. When combining understandability and actionability, only 14 websites (33%) websites scored ≥70% in both categories.

Results for the understandability subcriterion are presented in Figure 2, where we can see that not many websites scored over 70% for 4 aspects (content: 8/42, 19%; organization: 10/42, 24%; layout and design: 14/42, 33%; and use of visual aids: 9/14, 22%).