Page 52 - Experience Based Co-design - a toolkit for Australia

o The language patients use – such as the ideas they use to make sense of their experiences and their own responses
o The service elements or incidents that had a particular impact – these may be communications, attitudes, behaviours and/or people.
The steps below can be used in both individual interviews and group discussions.
HOW
1. Make sure patients are physically comfortable and at ease
Consider and prepare for how you are going to capture the story e.g. second person going to take notes, videoing, audio recording.
For interviews, ask consumers about their preferred place to meet. For some, it helps to conduct sessions in their homes where they can feel free to be themselves and express their experiences fully. However, others may find this uncomfortable.
Be prepared for moments of deep emotion for patients as they tell the story and re- live particular moments, or discover things they had not noticed previously, or re- experience feelings they thought were past. It can be important to have family and friends as part of the interview to provide support, as well as ready access to formal support services. Be prepared for patients who are emotionally very strong as well – most grow in some way through their experiences.
As a researcher, it is also important to be prepared for intense emotions, and to be able to articulate these in full empathetic support of the patient. It is common to recall one’s own experiences as well, and it is important to hold these carefully during the interview. A calm, quiet, deeply empathetic manner is completely appropriate. Give patients the time to tell things their way. Gathering stories can be exhausting for both the patient and the researcher. Be aware of exhaustion. Agree a timeline before the meeting and if the time line is reached ask if they would like to carry on and be prepared to conduct the interview over more than one meeting. The principle here is not to rush the story telling at the same time as managing the effectiveness of the process by avoiding exhaustion.
2. Briefly explain the purpose and format of the interview/discussion
Before you begin:
Make sure patients understand and have given their consent to participate. Emphasise that the session is unstructured and designed to give them free reign to talk about their experiences.
There are usually three different aspects to a storytelling session:
o Patients telling their story and talking about their experiences.
o Patients reflecting on what their experiences meant for them.
o Patients reflecting on what their experiences suggest about services and how
they can be improved.
These are typically intertwined in the telling, and it is better to let people manage the session in their own way.
Adapted with permission from healthcodesign.org.nz