“To become a patient was to relinquish oneself, to be received into a system which, however benign, subtly robbed one of initiative, almost of will.”
P D James
The following notes provide an outline of possible scenes and approaches for a workshop with Admiral Nurses.
Our KEY Question:
How might we develop the opportunities to talk about research
as part of our interactions with patient/carers?
The opportunities are:
· To raise the topic of research
· To build awareness of the Join Dementia Research campaign
· To signpost to current open studies or evidence
The issues we might explore:
· Research as guinea pigs; as something done at end of life; as too complicated
· Concerns about health data, Industry, initiatives such as DeepMind
· Tapping into people’s atruism, giving and hope
· Carers’ worry about consent on behalf of patient
· Research burden of additional tests
· Digital - Social media, online support and apps
· People’s support for research
· Desire to use evidence to improve care
We will begin with an agreement that we are using forum theatre as a means of exploring the issues around dementia and research. We will assure people that everyone is safe, that they can just observe and have right to say no. We will ask that they are willing to imagine that these events are happening as real and suspend their disbelief. We will begin on a lighter note.
1. Just After Diagnosis - We explain that one of us will take on the role of a patient (holding some leaflets about a research study) and that people will have the opportunity to ask some questions (person-in-role)
We will start by asking a few questions about where the action is taking place – home/hospital/care home/clinic; describing the room (building belief). The person-in-role begins to talk. It is almost as if we are hearing their thoughts.
“The nurse has just given me this. Emmm, what did they call it – a study, a trial? I don’t really understand it all. Seemed a really nice person…I’d like to help. Early onset, that’s what the doctor said…”
We freeze the action at this point and invite people to reflect on what they have heard then begin to ask the patient question to help find out more. (Hot Seating) After a few minutes where we may freeze the action again, we will move on to the carer
2. Conversation with a Carer – another chair is added to the side but slightly further back behind the patient’s chair.
In pairs - what is carer thinking at this point? We invite a participant to sit in the chair as we hear
3. Talking about Research - Two chairs are set out, almost facing each other.
In pairs, small groups: How have you approached the topic of research? What words or phrases have worked well?
We can do this in a number of ways depending on whether the participants are relaxed and involved.
The safe way will be for us to take on the roles of ‘patient’ and ‘nurse’
The more adventurous way will be for the participants to take on the roles
A third way is to give each of the roles a team of supporters who can help shape the language.
We will assume that the pleasantries and procedures have taken place. No 'would you like a cup of tea so that we go straight to the point where we talk about research.
We will use a variety of drama conventions to allow us to run and re-run the conversation; to go forward and back in time; to challenge some opinions and test out what might work.
Question for group. Where does the conversation begin? Who mainly initiates the conversation about research? Are more patients/carers asking? Are the questions changing? (See Asking Thinking Questions)
4. Why do we do this…(factual referencing)
· Research active Hospitals = better outcomes
· Research is a positive experience = better quality
· Most research compares standard treatment with an addition
· Research Nurses reckon that research makes them better at care
· Research seeks to improve diagnosis, treatment, care and services
5. A Photograph (Still Image)
Participants are asked to create a moment in time when the Nurse and patient are having a conversation. As each group shows their image the others are asked to pride a caption
6. If xxxxxxxx (replace with Apple Computers, Hilton Hotels, Thomas Cook, Amazon) delivered research… what would the experience sound and feel like for the participants?
7. Marking the Moment – To end the session, we will invite participants to walk past our patient chair as if it is ten years from now.
What might we be able to say to the patient and/or carer?
To finish: We will remind people that we were using forum theatre a learning medium and that we are out of role. We will thank them for participating and invite some out-of-role reflection.
What symbolic objects might be helpful?
Text about Dr's appointment
MRI scanner image
Who are the people we may want to bring into the drama?
Allied Health Professionals
Media - print, TV/radio, online, social
CCGs, Trusts and other providers
What Information and resources about JDR would we want the Admiral Nurses to know?
Some background reading
Dr. Alzheimer and the patient who helped reveal a devastating disease
Kate Swaffer’s blog
Wendy Mitchell’s blog
Even healthcare professionals find it difficult being a patient:
“Why was I so authoritative in a surgeon's coat but so meek in a patient's gown.”
Paul Kalanathi - When Breath Becomes Air