Competing factors in Easy Read: producer perspectives.

 

Deborah Chinn's paper, "Talking to producers of Easy Read health information for people with intellectual disability: Production practices, textual features, and imagined audiences," (2019) was recognised with an Australasian Study of Intellectual Disability award at the 2020 AGM. The paper discusses the development of accessible information from the creators point of view by looking at

·      what influences the priorities of those creating Easy Read health information;

·      how the creators saw the Easy Read health information being used in real-world settings;

·      the role Easy Read Health Information plays in providing people with Intellectual Disability with accurate medical information;

·      how people with Intellectual Disability see Easy Read health information.

Being from the UK, the paper is specifically discussing Easy Read only. You can read more about on the similarities and differences with Easy English here. Chinn specifically investigates Easy Read in the context of health information and the study also looks at how the medical staff and others used the Easy Read materials.

 The paper touches on the lack of standard practice in the creation of Easy Read and how it can mean a lack of consistency from different creators. This means that end users may benefit from the content produced by one creator but not another. 

Chinn also considers how health staff may influence the outcomes for the end user by their engagement with this health information. For example, health staff may not want to provide the end user with options they do not consider to be in the patient’s best interest. The paper raises the need to remedy biases concerning public institutions by enabling the independent participation of those with low English literacy within these institutions  This highlights the need to ensure Easy Read health information supports the independent participation and decision making of people with Intellectual Disability.

Chinn recognises need for collaboration between the creators and the end-users. People with Intellectual Disability have diverse ranges of capabilities and needs and they cannot be treated as a homogenous audience. However, the detached 'on demand' nature of commissioned Easy Read content magnifies the risk of presumption relating to the end-user.

 Creators share the concern that a lack of collaboration can push the creator to produce for imagined audiences rather than the real-world end user. This limits the ability of the accessible communication to reach those whose needs do not conform.

 The research shows that while progress is being made, there is still work to be done.

 What do you think?

Do you see the same issues with Easy English?

Are we providing only positive options?

What competing needs have you found to be involved in Easy English?

Do you think there is a difference when creators work with different people who are the intended readers?

We would love to know your thoughts.

Cass

 

Bibliography

Chinn, D. 2019. "Talking to producers of Easy Read health information for people with intellectual disability: Production practices, textual features, and imagined audiences." Journal of Intellectual & Developmental Disability 44 (4): 410-420. 

        https://doi.org/10.3109/13668250.2019.1577640.

Communication during COVID19

It has been a long time since I have put a blog up. 

With all the content being developed for this current time, it is already useful to have some reflections on what is being created for various audiences.

Below is a blog from Ariella Meltzer from Power to Persuade  @ariella_meltzer on 1 April 2020 discussing her observations as she collates accessible COVID19 resources.

Information accessibility during the COVID-19 crisis Full article.

She covers a number of highly relevant issues regarding accessible written content. Some of her comments and excerpts from her article are below:

How quickly does accessible information come out?

" Within a few days of the COVID-19 situation becoming serious in Australia, .....

the timeline should be the same for the accessible information – particularly in a crisis that has disproportionate impacts for people with disability."

Which accessible formats are covered, and why?

"......COVID-19 has been in Easy Read/Easy English format.

Auslan resources have also been produced, but are a distant second in terms of quantity.

Other formats – such as ‘social stories’, entirely pictorial (wordless) information and images for users of alternative and augmentative communication systems – have only been available very rarely, and not necessarily from Australian-based organisations."

" A thorough approach using multiple formats has never been more important."

To what extent is accessible information kept up-to-date?

" one accessible document cannot be enough, because the information – what is happening, what we know, the level of risk and the rules we need to abide by – keeps changing.

Only a minority of those producing accessible information are however continually updating their offerings as the COVID-19 situation changes and people’s information needs change. Access Easy English has provided many updates, including after each announcement of new social distancing rules by Prime Minister Morrison.........

Expression Australia has also provided regular updates in Auslan..............

Other organisations, such as IDEAS and PWD Australia, have included accessible information among their regularly updated COVID-19 information hub pages, ......

The work by these organisations show the importance of accessible information being kept as up-to-date as that which the rest of the population has available."

Is only the baseline information covered or the same variety of sub-topics that others receive?

"....risk ......only the most basic set of information is covered and that many of the sub-topics are left behind. .......A few organisations have led the way by publishing more than one accessible document about COVID-19.

Access Easy English has published many different documents including explainers on the virus and hand washing and summaries of the various social and health rules that have been announced.

Similarly, NSW Council for Intellectual Disability has published not only an easy explainer about COVID-19 but also separate documents about how to maintain one’s mental health during this period and about rules for staying home.

The Growing Space also has a page full of resources on different topics.

.....this variety of information seems very sensible, useful, practical and needed."

How, and by who, is the information produced and disseminated?

"......provision of accessible information on COVID-19 has been done by specialist information access services or disability advocacy groups. .......... In this respect, they are logical places from which such information can be distributed in an already-scary and unsettling time.

On the other hand, however, leaving the production of accessible information to these groups at a time of such critical public health messaging could also be seen as an abdication of responsibility by other information outlets who are otherwise covering COVID-19 and providing health advice. Should news services and governments also be involved in producing such information? There is some government department-branded accessible information on COVID-19, but it came out late and is not as comprehensive as that provided by the specialist information access services and disability advocacy groups."

Who checks the accuracy and quality of the information?

Finally, there is also a question about quality control of any accessible information on COVID-19. At a time when good messaging is of critical importance, it is vital that any accessible material provided to people is both accurate in its medical and social information and good quality, in terms of following accessible production guidelines (e.g. using proper formatting, pictures, easy language etc). Without being accurate and high quality, the usefulness of the information is diminished and, at worst, can confuse people or even give them the wrong information. The difficulty is that accessible information is an area that has not ever been regulated or subject to quality control checks in Australia. At the best of times, the quality of accessible information varies – and this matters even more when people’s lives depend on it. Collaboration between producers of accessible information who are well-trained in accessible production guidelines and health experts who can check the accuracy of the medical information included is ideal, but this is also hard to achieve at a moment when time and resources are so stretched. "

Thanks for sharing your reflections Ariella.

Look out now for my next blogs and commentaries on how information is provided at this time, and my new blog on Easy English and Easy Read. They are different.

Cathy

Cathy Basterfield
Owner Access Easy English
Consultant – Speech Pathologist

Telephone: 0466 579 855

Email: cathy@accesseasyenglish.com.au
Website: https://accesseasyenglish.com.au/

Facebook: https://www.facebook.com/accesseasyenglish
Blog: http://accesseasyenglish.blogspot.com.au
Twitter: @accesseasyengli

Health Literacy

Lots of work is being done around the concepts of Health Literacy.

What is Health Literacy? There are various definitions. This is the one currently from the Australian Commission for Safety and Quality in Health Care 

"Health literacy is about how people understand information about health and health care, and how they apply that information to their lives, use it to make decisions and act on it.

Health literacy is important because it shapes peoples health and the safety and quality of health care. Low levels of individual health literacy contribute to poorer health outcomes, increased risk of an adverse event and higher healthcare costs"

 

From 2012,  the Australian Commission for Safety and Quality in Health Care have been conducting consultations and reviews about Heath Literacy. Eventually a Health Literacy National Statement was developed.

In all this information, it is acknowledged that 60% of adult Australians have non functional health literacy skills. This is higher than the generally quoted 44% of people with non functional literacy, as Health literacy does require additional skills, including understanding of numbers and quantities, pros and cons of information, and also a higher number of less familiar words in the content. ABS#4228, 2013

It is also acknowledged that people who are at higher risk of poor health and poor health outcomes, also have poor educational attainment or are from poor socio-economic areas. They are more likely to have chronic conditions such as chronic diabetes, obesity. It has been shown time and again people with non functional literacy present to their health practitioners at a later stage of their health issue, have less awareness of warning signs or symptoms, have poorer uptake of intervention or following the intervention accurately, and not surprisingly when you read this, have poorer health outcomes.

Of interest is that Health Literacy research parameters list a wide range of domains to consider to improve health literacy. A 2015 paper is one like many which talks about measurement against 9 different domains to determine Health literacy. These being

1) Feeling understood and supported by healthcare providers;

2) Having sufficient information to manage my health;

3) Actively managing my health;

4) Social support for health;

5) Appraisal of health information;

6) Ability to actively engage with healthcare providers

7) Navigating the healthcare system;

8) Ability to find good health information;

9) Understand health information enough to know what to do.

You can see that domain 9 on this list is about providing health information “enough to know what to do.” An interesting statement. To date, this is usually seen as writing medical information, by removing most of the most technical of terms from the documents, and using Plain Language techniques. However, this is only going to improve the understanding for a small number of people, who already have good literacy, but maybe have little medical knowledge.  

What about the 44% of the adult Australian population (Similar % in Canada and UK, higher in US) who cannot read to this level?

Health information must be written in an Easy English style as well. Otherwise the many people who do not have functional literacy, will still not be able to meaningfully access information about their health. Who are these people?

The person in the street and/or the person who may want to engage with their health practitioner or about their health

· People with poor educational outcomes

· Early school leavers

· Hearing impaired or people from the Deaf community

· People with Mental Illness

· People with intellectual disability and/or learning difficulties

· People with Dyslexia and other reading challenges

· People with diagnosed lifelong disabilities, eg:, Cerebral Palsy.

· People with acquired disabilities eg: after a stroke , after a car accident, dementia.

In addition, other people who value Easy English are those who are

· highly stressed

· time poor 

· with sick family members

· sick themselves.

Also people who have English as a second language can and do value the availability of Easy English. Think of a new migrant learning English, someone who has come from a refugee camp, or someone who has not read much in English, even though they have been here for many years.

 

Where is this health information in Easy English?

There are a few places starting to develop their resources in this vast area. But all health messages need to include Easy English in their suite of accessible documents. How can you educate the community if as many as 60% of people can not functionally read your health messages?

These links will take you to some work being done in the UK. Some is clear and easier to read than others, but you can see it is quite different to the traditional information provided to patients and people looking for information about their health.

 NHS Foundation Trust Sheffield Teaching Hospital 

A-Z Easy Health 

Books Beyond Words

Here is an example of Easy English developed by Access Easy English in partnership with the Country Fire Authority Vic. It shows you how information can be developed in everyday words so people can read, understand and use the information meaningfully.

Call me to talk about how Easy English can be included in your suite of health and education materials for your patients and the wider community.

Cathy Basterfield

Access Easy English

Consultant – Speech Pathologist
Telephone: 0466 579 855
Email: cathy@accesseasyenglish.com.au

Website: www.accesseasyenglish.com.au
Facebook: https://www.facebook.com/accesseasyenglish (recent projects)

Twitter: @accesseasyengli