Improving website accessibility for people with early-stage dementia ...

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derived from a literature review of the implications of dementia-related cognitive changes for website design were combined with general web accessibility ...
Aging & Mental Health, September 2005; 9(5): 442–448

ORIGINAL ARTICLE

Improving website accessibility for people with early-stage dementia: A preliminary investigation

ED FREEMAN1, LINDA CLARE2, NADA SAVITCH3, LINDSAY ROYAN4, RACHAEL LITHERLAND3, & MARGOT LINDSAY5 1

Sub-department of Clinical Health Psychology, University College London, UK, 2School of Psychology, University of Wales Bangor, UK, 3Alzheimer’s Society, London, UK, 4North East London Mental Health NHS Trust, Essex, UK, and 5Department of Mental Health, University College London, UK

(Received 21 January 2004; accepted 25 August 2004) Abstract This study, conducted collaboratively with five men who have a diagnosis of early-stage Alzheimer’s disease (AD), is the first stage of a formative research project aimed at developing a new website for people with dementia. Recommendations derived from a literature review of the implications of dementia-related cognitive changes for website design were combined with general web accessibility guidelines to provide a basis for the initial design of a new website. This website was compared with an equivalent site, containing the same information but based on an existing design, in terms of accessibility, ease of use, and user satisfaction. Participants were very satisfied with both sites, but responses did indicate some specific areas where one site was preferred over another. Observational data highlighted significant strengths of the new site as well as some limitations, and resulted in clear recommendations for enhancing the design. In particular, the study suggested that limiting the size of web pages to the amount of information that can be displayed on a computer screen at any one time could reduce the level of difficulty encountered by the participants. The results also suggested the importance of reducing cognitive load through limiting the number of choices required at any one time, the very opposite of the ethos of much website design.

Introduction The Internet is increasingly being used as a health resource, and there are now many sites offering information and advice to those affected by dementia. However, few of these are specifically aimed at people with a diagnosis of dementia, and scarcely any appear to have been designed with the particular viewing needs of the person with dementia in mind. The growth in the Internet and its potential for use as a mental health resource for young and old alike (e.g., White et al., 2002), suggest the importance of optimizing its provision for people with dementia. However, given that memory difficulties are a central element in current definitions of dementia, and a common experience for many people with early-stage dementia (Morris, 1999), sceptics may question whether there is actually any point in trying to design websites for people with dementia. It is also likely that many of the current cohort of older people with dementia will have very limited experience of using computers or the Internet, although of course this is set to change in the future; they will therefore be presented with the challenge of acquiring a new skill. It has been demonstrated, however, that people

with memory difficulties are able to learn, and retain over an extended period of time, the knowledge and skills necessary to use a computer (Glisky & Schacter, 1988). Studies applying errorless learning methods for people with early-stage Alzheimer’s disease (AD) show that, if the right learning approaches are adopted, it is possible for participants to learn and retain new information (Clare, Wilson, Breen, & Hodges, 1999; Clare, Wilson, Carter, Breen, Gosses, & Hodges, 2000; Clare, Wilson, Carter, Roth, & Hodges, 2002). Work within the Living with Dementia project also attests to the validity of working to increase website accessibility for those with dementia. One Alzheimer’s Society branch has implemented a computer pilot project in which people with dementia have developed a branch website, which they maintain with the assistance of a support worker.1 There is also already at least one Internet-based self-help group for people with dementia in operation.2 It was, therefore, felt important to investigate how the design of a website can optimize its use by people with dementia. The Alzheimer’s Society in the UK, as part of its Learning to Live with Dementia project, worked

Correspondence: Dr Linda Clare, School of Psychology, University of Wales Bangor, Bangor, Gwynedd LL57 2AS, UK. Tel: þ44 1248 388178. Fax: þ44 1248 382599. E-mail: [email protected] ISSN 1360-7863 print/ISSN 1364-6915 online ß 2005 Taylor & Francis Group Ltd DOI: 10.1080/13607860500142838

Improving website accessibility for people with early-stage dementia with a group of people with dementia to produce an information booklet and a set of guidelines on writing accessibly for people with dementia.3 The Society wished to use these as the starting point for a new web-based service for people with dementia. The aim of this study was to produce and evaluate a website with the specific design needs of those with early-stage (mild to moderate) dementia in mind. The ethos of the project in general, and this study in particular, was collaborative in nature, aiming to include people with dementia in the research process, rather than viewing them simply in terms of symptoms or cognitive deficits (Reid, Ryan, & Enderby, 2001). Social models of disability (Clare & Cox, 2003; Oliver, 1990) and person-centred approaches to dementia care (Kitwood, 1997) informed this ethos. A social model of disability indicates that, rather than assuming that people with early-stage dementia will find it too difficult to use the Internet, we should consider how websites may be designed in a way that maximizes their accessibility and enables people with early-stage dementia to benefit from this resource should they wish to do so. Two core characteristics of person-centred planning (Jeffrey, 2001) informed the study’s research approach, which aimed to focus positively on the individual with dementia as a person, and allow control of the process to rest as far as possible with the individual. The study described here represented the initial stage of a formative research project (Rossi & Freeman, 1985) which aimed at maximizing the suitability and success of a website to be used by those with dementia. The study took place in three phases: a review of the literature relevant to designing a website for use by people with dementia, design of the website by the Alzheimer’s Society web designer (including assessment and re-design sub-phases), and evaluation of the website with feedback for the next level of design and evaluation. A number of organizations have produced general guidelines on accessible website design4. While these principles clearly have relevance for older people with dementia, this study considered how they might be refined and extended in the light of knowledge about the kinds of cognitive changes that people with early-stage dementia experience. Much of the research on cognitive changes in dementia has been carried out in relation to AD, and this review reflects that focus. However, many of the recommendations for people with AD will also be applicable to people with other dementia diagnoses. The cognitive changes of interest fall, broadly speaking, into four main areas: ability to process complex information, memory functioning, attention, and the effects of overall cognitive load. These areas are discussed in turn below. Many of the key biological features of AD are seen in the association areas of the brain (Morris, 1999), those areas dealing with the high-level integration of information. Lower-order processing areas are

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relatively unaffected. Low-level auditory and visual processing are, therefore, relatively preserved compared to higher-order processing (Miller & Morris, 1993). Contrast sensitivity, visual acuity, and colour identification are relatively unaffected (Mendez, M. F., Mendez, M. A., Martin, Smyth, & Whitehouse, 1990). People with AD are able to use colour cues to help focus attention (Nebes & Brady, 1989), but may have difficulty with a variety of more complex perceptual tasks, particularly figure-ground identification (Mendez et al., 1990), for example recognizing objects when contours of drawings overlap, or finding shapes hidden within other shapes. The implications of these findings for website design are that colour and contrast cues are likely to be useful in directing the person with AD around the website, but that the pages should be designed with ‘‘clean’’ lines and distinct objects, and there should not be overlapping or complex arrangements of shapes which may prove confusing. Memory difficulties in dementia (Morris, 1999) relate particularly to changes in episodic memory, or memory for personally experienced events. Web pages should therefore be designed bearing in mind that the viewer may forget the task in hand. As recognition memory is generally better than recall, Woods (1999) suggests that retrieval cues should be used wherever appropriate. Implicit memory, memory that is not consciously available but is still able to guide action, appears to be relatively preserved (e.g., Keane, Gabrieli, Fennema, Growdon, & Corkin, 1991; Ober, Shenaut, Jagust, & Stillman, 1991). For website design this suggests that, in order to help recognition memory, full use should be made of visual cues such as pictures or icons which could be combined with verbal cues. It is also likely that learning to navigate the site will be helped by keeping different pages as structurally similar as possible, so that even if the surfer does not consciously remember how to navigate each page, implicit memory derived from viewing previous pages will help to promote easier navigation of the current page. Changes in semantic memory, or memory for facts and concepts, are also relevant. People with AD can have difficulties with comprehension of text (Kempler, van Lancker, & Read, 1988; Morris & McKiernan, 1994), particularly in relation to understanding of more abstract meanings (Brandt & Rich, 1995). The language on the site should, therefore, not be overly complex and should avoid more abstract or metaphorical language. For example, the customary use of ‘‘home’’ to signify a link to the home page might be confusing. People with early-stage AD tend to perform relatively well on vigilance tasks, but have more difficulty with tasks requiring sequencing or manipulation of cognitive activity. Phasic attention, or the ability to direct attention in a particular ‘‘direction’’, is generally unaffected, but the ability to shift attention is affected (Mendez et al., 1990; Parasuraman,

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Greenwood, Haxby, & Grady, 1992), attention span is reduced, and reaction times are slowed (Nestor, Parasuraman, & Haxby, 1991). Divided attention tasks involving the ability to sequence and co-ordinate more than one cognitive activity at a time are especially difficult for people with early-stage AD (Baddeley, 1992; Becker, Bajulaiye, & Smith, 1992; Nebes & Brady, 1992). Having to make concurrent choices may, therefore, particularly interfere with the ability of people with AD to complete tasks (Ferris, Crook, Sathananthan, & Gershon, 1976). In terms of website design this means that it is imperative to cut down on the number of items on the page competing for attention, and make sure that what is there is necessary. The number of choices available on each page should also be minimized, the very opposite ethos to that found on many pages on the Internet. In general, when presenting information for people with early-stage dementia, reducing the cognitive load is of prime importance. Woods and Bird (1999) suggest that reducing distraction, avoiding tasks that require divided attention, using short, simple sentences, and supplementing words with relevant pictures and objects, may all be beneficial. The suggestions for website design detailed above were used to design a new website. Using a collaborative and person centred research approach, the experience and opinions of people with early-stage dementia using this new site were compared to those using pages of a more standard design4. This comparison was then used to produce recommendations for the next stage of the ongoing design process.

to 27 (mean ¼ 23, SD ¼ 2.6). Four were currently receiving acetylcholinesterase-inhibiting medication. None of the participants had ever used the Internet before. Two participants had used computers before, although not recently, while three had never used a computer. All rated their confidence in using a computer to look at a web page as low. As is appropriate for participants with memory difficulties, a continuing consent approach was adopted in which those involved in the study were reminded at various times throughout the research of the aims of the study of their role in it, and that they could withdraw at any time (Reid et al., 2001). The first time that the participants met with the researcher this was explained and they signed a consent form. Explanations were repeated on the second visit and as necessary thereafter.

Measures Because this was an innovative study with no clear precedent in the literature, no standardized measures for evaluation of website use and acceptability were available. Two measures were therefore developed, based on a theoretical understanding of types of difficulties that might occur derived from the literature review, and informed by experience of supporting people who have dementia. One was a semi-structured behavioural observation protocol involving both quantitative and qualitative aspects, and the other a quantitative self-report measure of satisfaction with the site. This was supplemented by a thematic analysis of details recorded in field notes made during and immediately after the sessions.

Method

Participants Inclusion criteria were that participants should have a diagnosis of dementia, be in the early stages as reflected in a score of 18 or above on the Mini Mental State Examination (MMSE; Folstein, M., Folstein, S., & McHugh, 1975), be aware of the diagnosis and willing to discuss some of the issues associated with it, and be happy to try working with computers. Potential participants were initially selected by approaching local providers of services for people with dementia. The eight members of a recentlyformed support group for men with memory problems agreed to consider taking part in the study. A further three people were suggested by the service providers contacted. Of these 11 people, six fitted the inclusion criteria and were initially willing to take part in the study, although one withdrew before the first session, as he was worried about his ability to use the computer. The five participants who completed the study were all men, with ages ranging from 57 to 72. All had been diagnosed with probable Alzheimer’s type dementia, and MMSE scores ranged from 20

Observational protocol. The participants were initially asked what information they were interested in finding. The researcher then noted the route taken through the website and, following the behavioural observation protocol, took details of nine aspects of site use. These covered the extent to which the participants were able to select what to do next, whether they became confused between different options, the number of linking errors made and whether links were recognized, the extent to which the pages contained the information expected, the ease of the scrolling procedure to move around, any confusion between the menu bar and the page text, any confusion between the site and section menus, and whether they found their desired information. Pre-existing familiarity with computer use (e.g., with using a mouse) was also noted, as were any positive or negative comments and requests for assistance, and time spent with the site. Satisfaction measure. Participants were asked to rate, on a 5-point scale from strongly agree to strongly disagree, their responses to nine statements about the site, for example ‘‘It was easy to move from one page

Improving website accessibility for people with early-stage dementia to another’’ and ‘‘I found it difficult to move up and down the page’’. The researcher administered the questionnaire verbally. The measure yielded a set of satisfaction ratings, each with possible scores ranging from 0 (lowest level of satisfaction) to 4 (highest level of satisfaction), covering various aspects of the experience of using each website. The nine aspects rated were page layout, ease of moving around the page, ease of moving between pages, feeling orientated, use of colour, size of text, ease of viewing, usefulness, and interest. (A copy of the measure can be obtained from the authors.) Thematic analysis of field notes. The researcher’s notes from each session were written up and a thematic analysis (Hayes, 2000) was undertaken. The aim of this analysis was to investigate the problem areas that had been identified as relevant in the observational protocol, and to identify any additional areas of importance. The analysis was, therefore, both theory-led (areas of difficulty were anticipated) and inductive (themes were allowed to emerge). The analysis consisted of reading the notes and grouping items of interest thematically, initially within interviews, and then across the whole set of interviews. All the notes were re-read several times and items were added or re-assigned as appropriate until a categorization was arrived at that provided the best possible representation of the data.

Procedure Information from the booklet developed by the Learning to Live with Dementia project was used to create two ‘‘dummy’’ websites: a set of web pages in the Society’s standard format, and another set of web pages containing the same information but incorporating the recommendations from the literature review. In a pilot phase, this new design was then informally evaluated by three people of similar ages to the participants, but without a diagnosis of dementia. Their comments were fed back to the designer and incorporated in the final version to be used with the participants4. All participants evaluated both websites. Sites were presented in counter-balanced order and with an interval between them varying from 4 to 7 days (mean ¼ 5 days, SD ¼ 1). Evaluations took place in the participants’ homes using a laptop computer. Sessions ranged in length from 1 to 2 hours depending on the wishes and needs of the participants. Each session consisted of the following components: initial discussion; introduction to, or review of, basic computer skills; semi-structured evaluation of the site, conducted in a conversational rather than ‘‘experimental’’ manner; completion of the self-report measure; and a final discussion. As part of the person-centred approach of the study, the researcher took the role of facilitator as well as data

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collector, at all times reinforcing the participants’ ability to succeed in using the websites, rather than just noting the areas in which they had difficulty. Results Results obtained from the observational and satisfaction measures are first presented for each of the two sites, allowing an overall comparison. An overview of the themes derived from analysis of field notes is then presented, indicating some areas requiring particular consideration in developing the website design further. Quantitative results from the observational protocol showed that there were notable differences between the two sites. These are summarized in Table I, which shows the mean number of pages visited and mean number of difficulties encountered for each site. In general, participants did not give clear indications that they were interested in finding out particular information from the websites, but did seem keen to investigate the information on the sites. The number of pages visited was similar for the two sites. The new site appeared easier for scrolling, with every participant having fewer problems on the new site, and participants were somewhat less likely to become lost or stuck, with four out of five having fewer problems. The old site seemed to offer rather greater clarity in distinction between menu and text, with three out of five having fewer problems on the old site. Participants’ views about their use of the site mirrored the observational findings. The new site was perceived to be somewhat easier in terms of maintaining one’s orientation, that is, participants felt they were less likely to become lost (new site M ¼ 3.2, SD ¼ 1.8; old site M ¼ 2.2, SD ¼ 2.0). The old site, however, was felt to be somewhat easier on the eyes (new site M ¼ 3.0, SD ¼ 1.7; old site M ¼ 3.8, SD ¼ 0.4). In other respects ratings were generally similar for both sites (overall satisfaction ratings new site M ¼ 3.0, SD ¼ 1.4; old site M ¼ 3.0, SD ¼ 1.3). Of the five participants, three provided self-report satisfaction ratings that were at the ‘‘very satisfied’’ level on most statements for both sites. Six key themes emerged from analysis of the field notes; these are summarized in Table II. The themes related to problems with scrolling, information being missed as the participant did not realize the page continued off-screen, the participant becoming lost Table I. Number of pages visited and difficulties encountered on each site. Old site M (SD) Pages visited Scrolling problems Menu/text confusion Getting lost/stuck

5.2 2.2 0.8 1.0

(1.6) (1.3) (1.3) (1.0)

New site M (SD) 5.6 0.2 1.4 0.4

(1.8) (0.4) (1.1) (0.9)

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Ed. Freeman et al. Table II. Summary of the thematic analysis.

Theme Scrolling problems Scroll wheel Mouse versus scroll choice Too much scrolling Information not visible Becoming lost through contents disappearing Wrong link Clicking on non-links Worry and upset

Details

Which site

Controlling scroll wheel and mouse button with same finger Difficulty in choosing to move mouse or scroll whole page Action tiring or boring The need to scroll to reveal more information is not obvious to the participant Happened when scrolled down page so that contents menu not visible Link clicked on menu was not the one that participant meant to click Clicking on text that is not a hyperlink (mainly on bullet points) Due to issues raised and worry about using computer

because the contents menu disappeared as he moved down the page, unintentionally clicking on a link, attempting to click on something that was not a link, and becoming worried or upset either due to the issues raised in the text or about using the computer. It was also noted that when the cursor moved over text it changed from an arrow to an ‘‘I’’, making it hard for participants to locate. Only one participant used the new site’s help page. Discussion The merits of the two website designs were assessed via self-report satisfaction ratings supplemented with thematic analysis of field notes. The findings provide some useful guidance on how to maximize the suitability of website design for people with earlystage dementia which can inform the further development of the Alzheimer’s Society website and maximize its accessibility to its target audience. Satisfaction ratings were generally high for both sites. This suggests that there may have been a ‘‘general satisfaction with the session’’ factor that was overshadowing answers to the individual statements. This interpretation is supported by the similarity in the observational measures between the two participants whose self-report measures had higher levels of variance and the three with lower levels of variance. Although this suggests caution in drawing conclusions about the sites from these high scores, it does suggest that the aim of conducting the study in a collaborative and person-centred manner (Kitwood, 1997), was likely to have been achieved. Despite these generally high levels of reported satisfaction, participants’ responses did indicate some specific areas where one site was preferred over another. The observational data showed that all participants had more scrolling problems on the old site than on the new site. This is interesting because there were no obvious reasons why it should be so; the new site did not have shorter pages or more instructions on how to scroll. It may be that since the new pages were

Both sites More apparent on the old site than on the new Long pages on both sites Both sites; continual reminders needed On long pages Three times on old site and not at all on new site Six times on new site and once on old site

designed to be clearer and produce less of a cognitive load on the viewer, this was reflected in problems with the activity where cognitive load seemed to be greatest, that of scrolling. This would be in accordance with the finding of Nebes and Brady (1989) that increased demands for divided attention are particularly detrimental to performance in those with dementia. The ‘‘cleaner’’ look of the pages also meant that there were fewer competing choices to be made, for example, there was no ‘‘search this site’’ box, and there were no advertisements inviting people to find out about membership or make a donation. Having to make choices has been shown to particularly disrupt task completion in people with dementia (Ferris et al., 1976). The reduction in choices on the page may, therefore, also have helped participants to concentrate on scrolling through the pages. There was greater confusion between menu and text on the new site. The contents menu on the new site had been changed, particularly with the addition of icons. However, the changes made for the new site may have helped to reduce the incidence of clicking on a non-intended link on the menu bar. We may speculate that the icons both helped and hindered the usability of the site. They may have attracted the participants’ attention but then, due to the participants’ difficulties in shifting attention (Mendez et al., 1990; Parasuraman et al., 1992) and in dividing attention (Nebes, & Brady, 1989), made it harder for participants to shift their attention back to the main text. The other difference that was apparent between the two sites was that there were more instances of clicking on non-linked text in the new site. This mainly occurred on the explanatory bullet points at the top of the pages on the new site. Although the aim of having the bullet points was to help simplify the pages, it seems likely the bullets themselves appeared ‘‘clickable’’, perhaps suggesting pressable buttons. This emphasizes the importance of careful consideration of what may make a visual

Improving website accessibility for people with early-stage dementia task complex for a person with dementia. The apparent simplicity of the bullet point may have led to difficulty in figure-ground analysis, which is known to be affected in people with AD (Mendez et al., 1990). An item such as a bullet point that is aimed at producing greater clarity may, therefore, produce greater complexity of interpretation for a person with dementia. This is supported by the Kirshner, Webb and Kelly (1984) findings that, for people with AD, line drawings were more difficult to name than photographs, although the latter ostensibly constitute a more complex visual representation. In terms of recommendations for future changes to the site, the three major problems identified from the observational data and thematic analysis—scrolling problems, non-recognition that there was more information further down the page, and becoming stuck because the participant had scrolled down and ‘‘lost’’ the contents menu—could all be addressed with one change to the site. That change would involve a major adjustment in the way that information is displayed, but would promise to produce a great improvement in the level of usability by people with dementia. This would involve rearranging the information so that it came in blocks of one screen’s worth. Both the contents menu and the title of the page would then always be visible. These could help to offset some of the memory problems often experienced by people with early-stage dementia (Morris, 1999) by acting as retrieval cues (Woods, 1999) linked to the content of the pages and the aims of the person reading the pages. Arranging each web page to be the size of the computer screen would mean that information would be less likely to be overlooked because it would all be immediately available. This would also be likely to help in reducing the cognitive load produced by having two ways to move around the page, moving the mouse and scrolling. Only one participant managed to get to the bottom of the page, which in itself suggests that the pages were too long, but he found it quite easy to use the ‘‘next section’’ link that he found there. Having ‘‘next page’’ (and ‘‘previous page’’) links at the bottom of each screen would provide an alternative to navigating through the menu, and this would reduce the number of choices about which sections to visit and provide a straightforward way to move through the site. To summarize, the results of the study suggest that the new design led to a decrease in scrolling problems but also to some confusion between menu and text and had a confusing use of bullet points. It is not clear what aspect of the new design reduced scrolling problems, since there were a number of differences between the two sites, and future research may usefully seek to compare and contrast variations in specific design elements. However, it seems likely that through reducing distractions, overall

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cognitive load for the viewer may have been reduced, freeing up cognitive resources for the task of scrolling. Use of icons in the menu of the new site seems likely to have both helped and hindered use of the site, leading to more menu/text confusion but easier link activation. The use of bullet points in the new design was confusing for the viewer. There were also problem areas shared by both sites associated with the length of the pages, suggesting that shorter pages that could be viewed within a single screen would be helpful. This was a small-scale, preliminary study and the findings must be interpreted in this context. Numbers were small, and the participants were all male. There were several other limitations of the study. The presence of the researcher as facilitator is likely to have influenced the participants’ experience of surfing the sites. While this was clearly important in adhering to the person-centred methodology of the study, it is also likely to mean that the participants’ experiences of the site were different from if they had been surfing them on their own. However, this would be the case in any research design in which participants know that they are taking part in research and does not necessarily bear on the comparison of the two sites. The researcher’s role as both facilitator and data collector may also have introduced biases into the data resulting from his different relationships with the participants and his knowledge of which site the participants were using. Future studies of this sort may wish to video the participants and then have qualitative and quantitative data analysed by researchers unaware of the status of the site. It should also be noted that the small number of participants, and possibly also the dual role of the researcher as data collector and facilitator, meant that the qualitative data used to develop themes was not as rich as it might otherwise have been. Future studies may wish to enrich the data collected through using a larger number of participants and the type of data collection procedure described above. Although this was a preliminary study it did produce some clear recommendations for improving website accessibility for people with early state dementia. It also provided a demonstration that it is feasible to involve people with early-stage dementia as collaborators in the development of web-based resources aimed at people with dementia, and that the findings can be used to improve the accessibility and acceptability of website design.

Acknowledgements We would like to thank the participants, all staff based at the Petersfield Centre, especially Jonathan Clements, and Jenny Grey of HUBB.

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Notes 1. See http://www.alzheimers.org.uk/BranchWebsites/ WestKent/home.htm 2. See http://www.dasni.org 3. Available from Rachael Litherland, rlitherl@ alzheimers.org.uk 4. A full report on the study is available from the authors and includes a list of accessibility guidelines for web design, a summary of general guidance on producing accessible websites, and details of major design differences between the two sites.

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