Would easy-read documents for all mean a more inclusive healthcare system?

Posted by Kate Byrnes, Graduate Tutor & PhD Student, and Emma Giles, Reader in Public Health Behaviour Change, Teesside University

When you receive letters from the hospital or the doctors, what do they look like? Text heavy, with no pictures, and in a small font size? That is how the letter looked when I received my invitation to cervical screening.

Traditional appointment letter

Now imagine that instead of getting that letter, you received a letter which was written in a large font, used shorter sentences and included pictures. How would you react? Would you feel like the information was simple and clear to understand? Would you feel like you were being patronised and treated like a child? Or, would you even care?

Public Health England, have developed a cancer screening invitation letter in an ‘easy read’ format along with an easy read booklet. Both of which can be provided to support women with learning disabilities to access cervical screening. 

 

PHE cervical screening: easy read invitation letter template

Within an easy read document, the images are left-aligned on the page, with text for each image on the right side. This helps the reader gain an understanding of what the written text says.

However, women with a learning disability, do not receive these easy read versions as standard. Every women invited to screening is given a booklet along with the invite letter which goes some way to explain both what happens during the appointment and the content of the letter. However, would it not be better for everyone to receive an easy-read version in the first instance?

Someone may only receive additional information in an easy read format, if they are identified by their GP surgery as having a learning disability, or because they receive support from healthcare services for people with a learning disability.

What about women who have a mild learning disability and do not receive any support? Or people who struggle to understand written information? It is possible these groups of people will be less likely to attend cancer screening simply because they do not understand the invitation letter.

Four in 10 adults in the UK struggle to understand and use typical medical information designed for the public (NHS, 2020). This is called ‘health literacy’. Having low health literacy has been linked to a range of problems, including poor general health, inappropriate use of health services and reduced life expectancy (NHS, 2020). One mechanism to limit the effects of poor health literacy, is having information in plain English, with simple and short sentences, without jargon.

Therefore, if the NHS is to use standardised letters, should they all be in a simplified, easy read format? This could help services meet the requirements of the Equality Act (2010) which stated that services need to make “reasonable adjustments” to their provision including to the information they provide.

The need for reasonable adjustments within the cervical and breast cancer screening programmes has been highlighted in my PhD research. The research is exploring the attitudes and opinions of women with a learning disability, family carers, and paid care workers towards cervical and breast cancer screening. Within the interviews each participant completes a Q sort (a card sorting task) to identify whether participants agree, disagree, or are neutral towards 28 statements. Each statement is placed on an individual card. The card is then placed onto a grid, to reflect how much they agree or disagree with the statement. Upon completion, it represents a picture of a participant’s range of attitudes and opinions towards cervical and breast cancer screening. The below figure shows a completed Q sort by a women with a learning disability.

Q sort by a women with a learning disability

When designing my PhD research, woman with a learning disability where involved in Patient and Public Involvement (PPI). PPI is defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (INVOLVE, 2020). The Health Research Authority (HRA) has acknowledged that public involvement can positively impact upon the design of research, especially in the design stage (Health Research Authority, 2017). By including Experts-by-Experience it is possible to find out what matters most to the public, especially when the research is controversial or on a sensitive topic. This is the primary reason that I wanted to use PPI during the research. Additionally, there has been very limited research conducted in England on this topic, and involving people with a learning disability in the design of the research.

The PPI in my research was split into three consecutive phases; identifying women’s preferences for how they would like written information to be presented to them; checking the easy-read documentation developed for the research, and obtaining the women’s preferences on the design of the Q grid. The importance of removing jargon and medical terms was highlighted in the results of the PPI, when the phrase ‘lady bits’ was used, women with a learning disability understood the location and some of the problems they might face going for screening, but didn’t always understand the word ‘cervix’. This is an important consideration for the invitation letters to cancer screening.

The invitation letters for cancer screening use terminology such as ‘cervical’, ‘cervix’ and ‘Human papillomavirus’ and assume that people will know what these words mean. What impact could using jargon and medical terminology have on the women receiving the letter? One problem is that women could misunderstand the procedure. Whereas, in an easy read document, the anatomically correct terms could be used, alongside an image, or further description. As the below image depicts:

PHE cervical screening: easy read invitation letter template

Ultimately, should there be standard information provided to all, which is written in a way that everyone can understand? Would more people be able to understand the information? Would this have an impact on uptake of services such as screening, and would this result in a more inclusive healthcare system?

Images:

1. Capture taken from the BBC News website, 18 April 2019, HEALTHWATCH/NHS ENGLAND The template for the letters is drawn up by Public Health England (https://www.bbc.co.uk/news/uk-england-tyne-47946395).

2/4. Courtesy of Public Health England: https://www.gov.uk/government/publications/cervical-screening-supporting-women-with-learning-disabilities

COVID-19 has brought the “digital divide” to the fore

Posted by Gemma Wilson, Health Psychologist & Research Fellow in Applied Health, Northumbria University

With the onset of COVID-19 it seems that we are relying on technology even more than usual. Many of us are using technology as our main source of communication, such as for work meetings via Zoom, family chats on FaceTime, WhatsApp messaging, or sending photos. Online food shopping, ordered and delivered to your door, has become the norm. Internet banking and health services have become more important than ever, and online communication platforms are even allowing us to continue our hobbies and exercise. But not everyone has access to these tools to support their daily living and wellbeing at home. Even people with access to the technology may not have the skills to use platforms, such as Facebook, Skype or Zoom, which still leads to exclusion.

There is an ever-growing number of older adults using the internet and social media, with notable increased use across the UK, USA, and Europe over the last decade. However, older adults still remain less likely than younger people to use the internet and social media. That’s why we decided to do a piece of research that aimed to explore older adults’ experiences of using technology, including social media, to connect with others. Part of this study involved interviewing 20 people who were over 65 years old from across the UK, to understand how they used technology to communicate with others, and to consider what helps and hinders their use of technology. 

All participants in the study regularly used digital devices and social media, however, despite their regular use of technology, they still experienced five barriers to using it as a tool to connect with others:

1. Confidence
Some had low confidence, seeing themselves as novices and not “technology minded”, and some lacked patience with technology.

2. Fear
Some were fearful that they would break the devices, do something “wrong” that they couldn’t fix, or they were worried about privacy and misinformation.

3. Practical issues
Some experienced physical barriers, such as the size of text, or the buttons being too small.

4. Culture and communication
Cultural differences around communication impacted the way some of the participants used social media and their online connections. They worried about how they would come across or didn’t like the way others communicated using social media.

5. Social network
Finally, we also found that existing social groups and relationships were key in the older adults choosing to use technology and in helping to provide ongoing support. Often without this existing social network, they would not have even received a digital device, let alone started using it, or understanding how to maintain it.

The overall message that we took away from this research is that technology - even for those who use it on a regular basis - is still only a tool for social connection, a welcome tool, but only a tool, and it certainly isn’t a replacement for face-to-face communication. However, during COVID-19, technology must be a replacement for face-to-face communication, and is the best available way for us to remain connected with friends and family.

The reliance on technology since the onset of COVID-19 has brought the “digital divide” to the fore in the context of these barriers. Many will continue to rely heavily on technology during this uncertain period, and for as long as we are social distancing. During these measures, it is important that we consider people who do not have access to technology and are unable to rely on it in a way that others can, as well as those that do have access but continue to experience difficulties in its use. Specifically, due to no longer being able to rely on social groups and wider support networks for guidance in using technology. This lack of access significantly heightens inequalities for so many people in all of the ways discussed above.

To find out more about this study, the podcast “Ageing in a Digital World” is available to listen/download on the following platforms:

• Soundcloud
• Spotify
• iTunes

Dr Gemma Wilson is a Health Psychologist, and a Research Fellow in Applied Health at Northumbria University, Newcastle. Her research interests are in ageing, psychosocial wellbeing, digital inclusion, social participation, digital health. Contact Gemma at gemma.wilson@northumbria.ac.uk, or on Twitter via @drgemmawilson.

Research team: Dr Gemma Wilson, Mrs Jessica Gates, Dr Santosh Vijaykumar, Dr Deborah Morgan.

The research was funded by the British Academy/Leverhulme Trust.

Does reaching the ‘hard-to-reach’ mean leaving traditional academia at the door?

Angela Wearn, PhD Researcher, Department of Psychology, Northumbria University

“You tend to find the ones that are protesting and telling you to go and get your smears are the ones that have their cushy little jobs and that lovely flash car that they can just jump in and dive down to the doctors”

From all the conversations I’ve had throughout my research career, this is one of the quotes that has stuck with me the most. For over three years I have been working on my doctoral research, conducted across Newcastle, which explores barriers to cervical screening participation in areas of high relative deprivation. We know that uptake rates tend to be lower in areas of socioeconomic disadvantage, but reviewing existing literature showed very little insight from women who lived within these communities themselves. Incidentally, I am one of these women. I grew up, and still live, within a neighbourhood which, according to the Index of Multiple Deprivation, falls within the 10% most deprived areas in the country. It’s therefore no accident that I ended up with a programme of research which aimed to prioritise the voice of this community.

Graffiti walls can be a simple and effective way of starting conversations

Initially, I had dreams of a wonderfully participatory project, where I formed a steering group and we worked together to find answers and seek solutions. As often happens in research, time ticked on and it didn’t work out the way I had planned. My participatory ideals had to take a backseat for a less time-consuming participant-researcher approach. I suspected my ‘insider’ status might open doors for me and to be fair, it did. I found myself being able to quickly connect and build a rapport with others when I discussed my own background and why I wanted to do this project. However, getting to the point of even having these conversations was by no means easy. I spent days, weeks, months trying to speak to community groups, charities and community members about my research. Some were very open and interested, others were not. I attended community get-togethers handing out cakes alongside research information, making ‘graffiti walls’ with post-its, even chatting about life over freshly made biryani at a cookery club. Actually, these were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me. I also began to feel my status as an academic researcher was a hindrance to what I was aiming to do at community level. For a lone PhD researcher, bringing together these two worlds, at times, felt completely impossible.

"community get-togethers...were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me"

Attending community events was a great way to connect with 

people who were otherwise unfamiliar with research

The quote at the beginning of this blog was when it all clicked into place. Although we were talking about cervical screening, I acknowledged something that I had already known all along - the same issues of accessibility and trust apply to involvement with academic research. If I put my working-class hat on for a minute, academic research feels neither accessible nor promotes interpersonal trust. From the outside, academia appears to be filled with people who think they know better than you, patronising you, sometimes even using you to showcase the poor decisions people make in life. I had to work hard to reassure people that I wasn’t there to pass judgement on their screening status. I’m still not sure many believed me. ‘Eat a healthy diet’, ‘Stop smoking’, ‘Engage in physical activity’, ‘Attend your screening appointments’. These are the messages that come through, focusing on the individual and discounting all the structural and social barriers that exist for people living in communities like mine. If you are trying to figure out how to afford the weekly food shop, the kids have come home with a tear in the coat you only bought a fortnight ago and you’re worried about not getting enough work from your zero hours contract, there is no mental space for ‘living your best life’ (and certainly no space for sitting with a stranger from some university taking part in a research study).

Those living in socioeconomically disadvantaged areas are often described as ‘hard-to-reach’. This often implies that despite best efforts to reach out, these groups are disinterested and disengaged. I tend to believe the reverse is true. Some groups are hard to reach because academic research is too disengaged from the community. I know of many academics who are so obviously committed to tackling the avoidable and unjust disparities in health, and for this reason I do feel positive for the future. However, as someone who is positioned in between the ivory towers of academia and the working-class neighbourhoods at home, I know there is still a lot of work to do. There is a long history of mistrust and marginalisation to put right. If we are serious about tackling inequality and involving so called ‘hard-to-reach’ groups in research, then we need more focus on developing trust and togetherness…and occasionally, this might mean leaving traditional academia at the door.