More than a leaflet

 

The final version of our 5 Key Messages. It is intended to provide a focus for a conversation between practitioner and patient/client.
Message 1 - Diabetes can cause blindness
This was in response to the women's group who asked us to be clear about consequences. Not to be afraid to stat the facts.
Message 2 - Save your sight
There is good news, you can take action to save your sight.

Message 3 - Go to all your appointments
In terms of looking after your eyes this is the most important action. Even people who do everything right, can get bleeding in their eyes. This can be treated if picked up early. Especially important is going for 'retinal screening', known by many people as the 'eye photo'.
Message 4 - Look after your blood 
As well as good blood glucose, the opticians tell us that good blood pressure and good blood cholesterol are important for keeping your eyes healthy


Message 5 - Find out more
The women's group said that we shouldn't just talk about eyes and diabetes. They argued that there are still a lot of people who don't understand that diabetes affects the whole body. So message 5 tells people that taking the action outlined in the leaflet will help other parts of the body. People are encouraged to find out more about this from their health practitioners.

What's all this about a camel?

Images by artist Sarah Jane Mason
www.sarahjanemason.com

The use of this Sufi story is aimed at building understanding about prevention and self-care in the Pakistani origin community. The South Asian origin communities have a significantly higher risk of developing Type 2 diabetes.


Our research showed that people do not always understand the idea of prevention. They feel that what happens to them is 'Allah's will' or just a bi-product of growing old.


Community members have a great respect for professionals and they are not always persuaded that  they have an important part to play in self-care. 


The use of this story with community groups and Expert Diabetes groups, makes a direct link with people's deeply held faith. I have written in an earlier blog about the importance of understanding the communities that we serve. 


This story (pasted below in English and Urdu) is proving a light hearted way to get messages across and spark great discussions. 


Each discussion pack has the colour version of the story with text and a black and white copy for each participant, a copy of the story in Urdu and a set of our 5 Key Messages leaflet. 

TRUST IN ALLAH BUT TIE UP YOUR CAMEL FIRST

A Teacher was travelling with one of his disciples. They had had a long day journeying across the hot desert. The disciple, a young man, was in charge of taking care of the camel.


They came in the night, tired, to an Oasis. The Teacher said to the disciple
‘I am very tired, I am going to bed. Before you go to bed, just make sure that you tie up the camel.


The disciple thought to himself: ‘I am very tired as well. I can’t be bothered to tie up the camel. I know, I will ask Allah to look after the camel. So he prayed, “Allah, take care of the camel,” and the young man fell asleep.


In the morning the camel was gone. The Master asked the young man, “What happened to the camel? Where is the camel?”


And the disciple said, “I don’t know. Don’t blame me. You ask Allah. I asked Allah to take care of the camel. I asked him very clearly! There was no miss- ing the point. Not only once in fact, I asked Him three times. And you go on teaching ‘Trust Allah’, so I trusted. Now don’t look at me like that.”


The Teacher gave a big sigh. He said: “Allah has no other hands than yours. Tying up the camel would not have stopped it from being stolen, but it would have stopped it from wandering off .Yes trust in Allah but tie up your camel first!”


For Discussion
1. What do you think this story is saying to us?
2. In what ways can we ‘tie up our camel’ by looking after our bodies and our health? 

The psychology of persuasion in behaviour change

 Thanks to @stuartberry1 and Steve Wardle, @desirableUX for finding this short video. 


It shows BJ Fogg talking about the psychology of persuasion in behaviour change.


Fogg talks about the importance of aligning three things:


- Trigger (the trigger for action)
- Ability (the person's ability to take the action)
- Motivation (enough reason to bother taking any action)


If any of these are missing, then a change in behaviour is unlikely to occur.


Fogg's formula fits with what our groups of people with diabetes told us when asked to tell stories about when they had changed their behaviour.


Triggers - the most common triggers for action and change described by our groups were experiencing symptoms, or having some other tangible evidence that something was wrong e.g. test results.


We want to change those triggers, so that people are taking action before there are any tangible problems i.e. so that they are preventing or limiting the negative impact of diabetes on their bodies.


So what triggers could we use that would become what Fogg calls 'hot' triggers? The suggestions that came from the groups centred around knowledge and understanding. When people were taking action to change their behaviour in order to prevent problems, they did so because they were clear about the benefits of acting or the consequences of not acting. 


For example amongst people with diabetes who go regularly for retinal screening (eye photos), the 100% motivation was their fear of losing their sight. They knew that diabetes can cause bleeding in their eyes and that that, left untreated, can cause blindness. So the message from the groups is 'be straight with us about the consequences of not changing our behaviour.' That knowledge and understanding provides both a trigger and a motivation.


Ability - The two groups were also clear about the importance of taking ability into account, when asking people to take action. It calls on health practitioners to have a good knowledge of the realities of life in the communities they serve; to have the humility to ask the person with diabetes what might work best for them and to listen carefully to their reply.


Motivation- This is one of the biggest challenges for people as they manage this disease. Diabetes is for the most part a long-term, chronic condition. People with diabetes describe the struggle they have over a long period of time to keep their motivation with regard to diet, exercise, taking medication and keeping all their health appointments. It would be good to know of any studies about what works.


Fogg's formula and the way it chimes with what was said by our two groups of people with diabetes, underlines once again just how much we can trust the contributions that patients/clients make to service design. 


This is especially true when that contribution has been made through a focused, deliberative process. As people deliberate together, their own views are changed and shaped by what they hear from others. Listening to others also sparks ideas and thoughts that otherwise would have remained undiscovered and undisclosed. 

Creating a self-care document

It is an exciting week, as we test the prototypes of a self-care document. The prototypes were created at a workshop held in March. 


Eleven health and social care practitioners developed the prototypes based on the findings of research with people with diabetes and members of the wider community.


This is what they came up with:

Working with an artist and creative practitioner, these instant prototypes were mocked up into proper documents. We are now taking them round health practitioners and patient focus groups for feedback. From that feedback we will create the final version.


Initial responses have been very positive.

Appreciative way to spread the 5 key messages

Yesterday, thirteen people met together to design a programme of activities to spread the 5 Key Messages about diabetes eye care. The different perspectives in the room included: health practitioners, health research, optometrists, health trainers, the community, and voluntary sector. 


We used Appreciative Inquiry (AI) to help us to think about what would need to happen to spread the messages successfully.


Appreciative Inquiry asks us to notice the very best of what works in relation to a particular issue - in this case spreading health messages across a community; and to explore what else might be needed to do this even more successfully. Then using the very best examples and the additional ideas, a picture can be developed of what success would look like. When we know what we are aiming for, then we can design the right steps to take us in that direction. 


Our workshop gathered the very best examples of spreading health messages through:
- community venues and networks; 
- GPs, Opticians, Pharmacists, and Hospital Outpatients; 
- Communications/PR. 


To these each participant added their own ideas.

Three pictures were created showing what needs to be done to spread the messages successfully. The video below shows the final presentations. 



 

Our 5 Key Messages

This informal video shows the prototypes of the key messages that were created by sixteen health and social care staff in Keighley at a workshop held in February 2012.


The key messages were developed in response to our earlier research with the Pakistani origin community aged 40-65 in Bradford. The findings included:

• the need for consistent messages to be given to people with diabetes;
• the confusion for some people with diabetes about the difference between regular eye tests and diabetic retinopathy screening;
• a lack of understanding about what damage diabetes does to the eyes;
• a lack of knowledge that diabetes can cause blindness;
• a sense of fatalism or resignation.

Discussion by workshop participants centred on 

• how much the messages should focus on eyes, rather than messages about diabetes as a whole;
• how hard hitting they should be; this, in the light of the research that showed that people who do attend DRS are motivated by not wanting to lose their sight;
• how to be visually creative about how the messages are presented;
• how many messages - from several through to a single message
• how to  ensure the messages are persuasive and contain action that people can take for themselves.

As well as the workshop, two focus groups (one male, one female) were held with people with diabetes from the Pakistani origin community. The groups gave examples of when they had changed their behaviour in response to a health message. They told us:

Be clear – don’t beat about the bush. People change their behaviour in response to messages when either:

-       the message is clear about the consequences of not acting

-       or that what the health professional is saying chimes with their experience e.g. the message is in response to symptoms being experienced or about something that is demonstrable like being overweight.

Make sure that any action that is asked for is feasible e.g. walking regularly for a certain length of time rather than requiring someone to go to a gym. Another example was of a man asked to change his diet, when he was reliant on his daughter-in-law for meals and he didn’t like to ask her.

The women’s group felt strongly that the key messages should not just refer to eyes. They pointed out the importance of helping people to understand that diabetes is a whole body disease. They felt the messages should reflect that.

So what are the final agreed messages?

1. Diabetes can cause blindness.
2. There are things that you can do to help save your sight.
3. Go to all your appointments.
4. Look after your blood it affects your eyes.
5. Find out more….taking this action also helps your heart, kidneys and feet.

Draft text for a leaflet:

SAVE YOUR SIGHT

Diabetes can cause blindness

Help your eyes by:

Going to all your appointments

- annual eye check

- annual eye photo screening

- GP diabetic health checks

Looking after your blood - it affects your eyes

- eating and drinking the right things

- taking regular exercise

- taking your medicines

Finding out more.. these actions also help your heart, kidneys and feet.

Your GP, Nurse, Optician, Pharmacists can tell you more.

SEE THE DIFFERENCE!

Behaviour Change - the role of religious belief

In an earlier post, I wrote about the need to understand what is important in the lives of the people we serve. Such understanding can give clues as to how to frame and phrase health care messages in ways that help people to make positive changes.

A significant number of people in our local population are Muslims, adherents of Islam. Their faith plays a major part in shaping their personal, family and community lives.

Islam, like other religious faiths, has useful teachings about health and care of the body. Chaplains in hospital settings have been able to help their health colleagues make links between treatment or health messages and the religious faith of their patients.

In the photo are two examples produced for Bradford Teaching Hospitals Foundation Trust by the Muslim Chaplains. Mohammed Arshad, one of the authors, described how he worked with physiotherapy colleagues to develop materials that would support attendance at the Chronic Pain clinic. He enabled staff to understand how the different prayer positions related to phsysio exercises and to change the question about whether people walk their dog, to a question about whether people walk to the Mosque.

This knowledgeable support gave real confidence to staff hesitant about straying into what can seem to be the vexed area of religion. Understandably, staff are anxious about whether it is appropriate or about giving offence by speaking inappropriately.

Religious belief is central to the lives of many people in our community. It is part of the warp and weft of their daily lives, an integral part of their individual identity. It does not seem odd to them to speak of faith in terms of every area of life. Making faith connections with health makes good sense to people and may help them understand better what is being asked of them.

For example, our research into awareness of eye health in that particular population, revealed that people struggled to understand the concept of prevention. Telling the Sufi story 'Tether Your Camel' (see previous post about story telling) created instant understanding and a lively discussion. With the help of the Chaplain's material, we were able to follow this up with more serious Islamic teaching references, with which people were familiar. 

For the people in our groups, changing behaviour in order to improve health was not just about making an individual choice but about living out their deeply held faith.

Behaviour change - the power of love

A couple of weeks ago, my eye was drawn via Twitter to an interesting blog by John Hitchin about the part played by 'love' in the life chances of young people 
http://bit.ly/IF2tqZ


The blog was talking about how it is often the lack of love that has been a significant factor in what had happened to young people. The blogger was asking, as a researcher, how do we talk about 'love' in research?


I was reminded of that blog during two meetings with community members last week. 
In this project we are working with two groups of people with diabetes - one male, one female.


I was asking people about the times when they had changed their behaviour in response to a health message. 


As they told their stories, I was struck by how great a part their families play in supporting that change. For example, daughters and daughters-in-law were cooking special food for the men to support their need to change their diet. In one family, the whole family had changed its eating habits to support their grandfather's bid to improve his blood sugar results. Of course the reason for that familial support was love.  Families were taking whatever action was needed to keep their much-loved relative alive and well.


It is all so obvious, that I am almost embarrassed to draw attention to it. Yet we never discuss this explicitly. Perhaps there is some thinking for us to do here, so that we can more consciously draw on that powerful tool for change.

The power of mindsets and the wisdom in stories

The photo attached to this blog is of an ornament I bought on my trip to Israel/Palestine last November. I found it in a gift shop in Tiberias. It reminded me of a workshop that we had run as part of the research phase of this diabetes eye care project.


During the workshop we had reflected on what we had learnt from participants about knowledge and attitudes to eye health in general, and eye health and diabetes in particular. One important factor that emerged was that some people had a fatalistic attitude, 'it is Allah's will'; or a sense that poor and failing eyesight is just inevitable, that nothing can be done.


One member of the workshop recalled a saying 'Trust in Allah but tether your camel'. We tracked the saying back to a Sufi story which is a light-hearted yet powerful counter to mindsets of hopelessness or fatalism.


I shared it with one of the two groups of people with diabetes participating in developing the interventions for the project. They enjoyed the humour of it, and had no problem in homing in on the story's main message. You might enjoy the story too:

A Master was traveling with one of his disciples. The disciple was in charge of taking care of the camel. They came in the night, tired, to a caravanserai. It was the disciple's duty to tether the camel; he didn't bother about it, he left the camel outside. Instead of that he simply prayed. He said to God, "Take care of the camel," and fell asleep.

In the morning the camel was gone -- stolen or moved away, or whatsoever happened. The Master asked, "What happened to the camel? Where is the camel?"

And the disciple said, "I don't know. You ask God, because I had told Allah to take care of the camel, and I was too tired, so I don't know. And I am not responsible either, because I had told Him, and very clearly! There was no missing the point. Not only once in fact, I told Him thrice. And you go on teaching 'Trust Allah', so I trusted. Now don't look at me with anger."

The Master said, "Trust in Allah but tether your camel first -- because Allah has no other hands than yours."

Creating the Key Messages

Gathering the knowledge in the room

Last Tuesday the first workshop was held to develop 5 Key messages. These are messages which we want staff across the health and social care system to communicate to people with diabetes about how to care for their eyes.

This was the first of three workshops through which, in addition to the Key Messages, we will develop a self-care document and a dissemination programme.

The methodology is that used by product designers. It consists of:

- research/observation

- synthesising all that has been learnt

- brainstorming ideas

- creating prototypes to test with relevant people

We had a really useful session and produced three prototype sets of messages. They cover a range of possible messages. The ways in which they differ, reflect the debate people had around the tables about:

-  how much the messages should focus on eyes, rather than messages about diabetes as a whole;

-  how hard hitting they should be, in the light of the research that showed that people who do attend the Diabetic Retinopathy Screening service are motivated by not wanting to lose their sight;

-  how to be visually creative about how the messages are presented

-  how many messages we should have- from several through to 1 message

-  how to  ensure the messages are persuasive and contain action that people can take for   themselves.

The prototypes are now being mocked up by an artist and will then be shared with colleagues and people with diabetes to gather their feedback. We will be asking people to tell us what they like about the prototypes and what else could be done to improve them. A small group of participants from the workshop will then re-work the messages in the light of the feedback.

Finding the 'hook' for health

Sometimes people need to get their story into the newspapers or on television. In order to do this they have to make sure that their story has a newsworthy angle, a 'hook'. 


The 'hook' is something that will catch the interest of a reporter or editor- like hooking a fish with a fishing rod. To catch fish you have to put the right bait on the hook. Different fish eat different food. 


In order to catch the attention of a reporter, you have to know what is important to them. Your story needs to fit their agenda. The sorts of 'hook' that will pull in reporters are things like: a heart-tugging human interest story, or a story that fits with the live issues in the news that week, or something that involves a celebrity.


These thoughts were sparked after reading lots of different material about how best to support people with diabetes. People with diabetes have the best chance of staying healthy when they understand the right way to take care of themselves. 


Not everyone with diabetes understands how to do this or even why this is important. So taking the lessons from fishing and the media world, professional workers may need to find the right 'hook' to help people understand. 


This is where having a deep knowledge of patients and clients might have an important part to play. Listening closely and asking questions to better understand, helps professional workers to know the reality of their patients' daily lives.  


Knowing what is important to the people they serve also gives important clues about how to catch people's attention. We can catch people's attention by making the connection between their health and the other things in their lives that are important to them. 


Could it be that the stronger that link, the greater the chance that people will take action to improve their health? 


The next blog will describe one way in which we are making such a link in this eye care project.

It ain't what you say, it's the way that you say it

This is a short, helpful video from the California HealthCare Foundation and their Better Chronic Disease Care Programme. It looks at how people can be supported to bring about behaviour change.


It demonstrates how a change of style on the part of professionals - from telling, to asking -  can enable people to manage their chronic condition more successfully. 


If you cannot view this video on this page, click on the link to go the original site: http://bit.ly/sp1xNt

Self-Care Management

One of our first tasks is to learn from what other people have done. If we can find out what has worked  well in other places, it will help us with the design of what needs to happen in Keighley. 

 Here is a video about what works to help people manage their health when they have the chronic disease COPD (Chronic Obstructive Pulmonary Disease). It is from the British Lung Foundation and it was found via a tweet from a GP in Lancashire.


If you cannot view the video on this page, click on the link to take you to the original site: http://bit.ly/yt6ABu