Sunday 6 August 2017

Let's Talk About Research

More and more people are being offered the opportunity to help answer questions that could make a difference to our health and wellbeing. But, what if you don't know about research?

The word RESEARCH may often sound rather grand yet it is, straightforwardly, about asking a question in a search for some answers. 

Beginning a conversation about research is a important stage in helping people understand about what it entails. Ideally this would take place long before we recruit people to such studies. 

This can be challenging especially when people are still coming to terms with the diagnosis of an illness. This is as true for dementia as it is for other conditions. 

Let's Talk about Research was the title we gave our workshop when Join Dementia Research* were invited to work with Admiral Nurses at their Professional Development Day in Coventry. 

We decide to use drama as a means of exploring some of the issues. We wanted to learn as much from the nurses but we were keen to avoid a 'script'.

We agreed some basic rules for this forum theatre...
  • people being safe
  • able to just observe 
  • choose when to interact
  • willing to believe 
A colleague Jo Burns took on the role of a person recently diagnosed with dementia. The group offered a name for the patient and then described the house. 

As soon as Jo began there was an immediacy. It was as if we were all present in the patient's house. We were engaged in both thinking and feeling. The patient began to talk...

After hearing a few statements and thoughts, the group asked the patient some questions. Each of these stages helped build belief and provided information before beginning to discuss research. We had to know more about each other if research has to play its part.

We were inviting the Admiral Nurse to enter a conversation. 

We were exploring the needs of the patient and their carer so that they could adapt the discussion appropriately. 

We weren't talking, here, about individual research studies. 

We were using forum theatre to create the story together to test out various different approaches to talking about research.

We also demonstrated how we might upload information to our phones to about How to Get Involved in Dementia Research and hear about How People Engage with Dementia Research  

The Admiral Nurses, we met, are clearly a group of highly professional, dedicated and passionate individuals….committed to supporting families living with dementia… Thank you.

We benefitted from listening to their knowledge and the way they thought research should be discussed. 

You can find your Local Admiral Nurses Team here.

I think we learned about...
  • Relationships - speaking about research helps if you know the patients
  • Circumstances - everybody is different and we should never make assumptions 
  • Timing - is all when discussing research
  • Choice - talking is about giving people the opportunity to ask questions before making a decision
  • Information - is required in different formats
Hopefully, we helped Admiral Nurses to access resources, to gain knowledge and build confidence in talking about research. 

Finally, a thank you to the NIHR Clinical Research Network team at Minerva House, London who helped shape our thinking and to Andrew Rutherford for taking on one of the roles.

Here are some further resources you may find interesting:

Which Me Am I Today - Blog by @WendyPMitchell 

Social living models for people with dementia - from @EcpdCarolyn 

Where Next for Care Home Research - Article by @KristinaStaley2 

....or how about taking part in this study or this online survey from Nottingham.

* Join Dementia Research is funded by the Department of Health and delivered in partnership with the National Institute for Health Research, Alzheimer Scotland, Alzheimer's Research UK

and Alzheimer's Society

If you are on Twitter then have a look at #myresearchlearning.

You can also read more about how we planned the work in the following post and more about Using Forum Theatre

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