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Recounting the untold stories of breast cancer patient experiences

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Recounting the untold stories of breast cancer patient experiences

We devised a three-part storytelling workshop, about raising awareness of the patient lived experience following a breast cancer diagnosis, breast cancer research activities undertaken by researchers, and the approach used by multidisciplinary healthcare teams in the management of breast cancer, using storytelling as a tool.

Dr Zahra Rattray
Senior Lecturer in Translational Pharmaceutics
Photo of Zahra Rattray
Project
Credits
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Hear from Zahra

Dr Zahra Rattray introduces the project, whose goal was to break down the barriers between different stakeholders and the breast cancer journey, be that the patients with breast cancer or clinicians and scientists.

Photo of Dr Zahra Rattray
Breast cancer is a leading cause of cancer related morbidity and mortality, impacting up to more than 4000 women in Scotland per annum. - Dr Zahra Rattray
A pile of cards on a table with hearts on them saying 'Where does your story begin?'

Why storytelling?

It is being increasingly recognised that the collective experiences of the patient at diagnosis and following treatment is significant to their care and quality of life.

Effective communication with the patient

Developing patients’ health history narrative can contribute to a more empathetic and personalized care approach where the patient has a voice, is empowered and involved in their care decisions and where they lived.

Three women sitting at a table.
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Photo of Alison Lannigan

Hear from Mrs Alison Lannigan

Mrs Alison Lannigan is a consultant surgeon at NHS Lanarkshire, who was introduced to Zahra through the NHS Lanarkshire Strathclyde Strategic Partnership, beginning the first of many collaborations.

Patients with recent experience of breast cancer treatment

We were keen to talk to patients with their recent experience of breast cancer treatment and patients are very keen to talk about the experience of breast cancer and some less.

A sign that says 'Choice: radiation tattoos! There ARE alternatives - not standard everywhere - give us options'
It's very important that the patients can trust those involved. - Mrs Alison Lannigan, consultant surgeon
A group of women standing in front of a pink wall.

Completely inclusive

We’re very grateful to those who responded and subsequently participated so fully in the workshops that we organized.

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Hear from Nick

Dr Nick Rattray got involved through the beginnings of an active collaboration within the NHS Lanarkshire University of Strathclyde Strategic Partnership.

Photo of Dr Nicholas Rattray
Dr Zahra Rattray giving a presentation in front of a slide titled 'Mutations: Spelling Errors'

Active research portfolio for breast cancer

We do a lot of research looking into cancer and looking into the underlying bimolecular causes of different types of cancer, including breast cancer.

It is comforting to know that research is going on that will improve treatments for the future. That means my grandchildren will benefit. - Patient response to research talks

Benefits of the strategic partnership

There’s a really good opportunity for us to be able to take the cell models and the work that we began in the wet lab, and try and to translate that across to experts within the surgical field.

Photo of Dr Nick Rattray and Dr Zahra Rattray
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Photo of Dr Margaret Rose Cunningham

Hear from Dr Margaret Rose Cunningham

Margaret is a Senior Lecturer at Strathclyde Institute of Pharmacy and Biomedical Sciences (SIPBS), researching the toxic effects of anti cancer drugs in the heart.

Gaining insight into unique perspective of patients

From a scientific perspective, I found it was very rare to appreciate the challenges taken from the lives of those that were affected most by cancer.

A sign that says 'Reconstruction'. - 'Many folks get used to their new shape surprisingly quickly' - 'can be uneven' - 'access can be variable'
I found that the stories shared were truly inspiring. - Dr Margaret Rose Cunningham
Margaret giving a presentation on 'Can we develop new ways to protect the heart?'

Thought-provoking question

We had the opportunity as scientists to share our research with the group, which was really mutually beneficial because it really led to that thought-provoking question of why we actually do the research that we do.

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Hear from Allison Galbraith

Allison is a professional storyteller and folklorist, helping people tell their stories. She got involved after having worked with Margaret on several occasions.

Photo of Allison Galbraith the storyteller, a woman with glasses with curly blonde hair.
The story of how you got your name - this is usually something that everybody has an opinion about, whether they know the story or not - Allison Galbraith
Sign saying 'More workshops for story sharing' and a heart.

Confident and able to tell their story

There was a staged approach to collecting the participants stories and this was to help people feel relaxed and confident and able to tell their story in a way that was both meaningful to them and to the listeners.

Warm up exercises so people are relaxed and happy

Some of the warm ups that we used to help people share their stories and craft their stories were telling personal stories about themselves, things that they were relaxed and happy to tell us.

Allison Galbraith talking animatedly to a group of people sitting
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Workshop on objects that mean a lot

One of the workshops asked people to bring an object that had personal meaning to them during their breast cancer journey.

A piece of paper with a drawing of people and a rainbow.
Every story will be individual - give it your best shot
A beige camisole on a pink surface.

One patient shares their story

Listen to a patient sharing about how they feel about having a CT scan, and the object that means a lot to them.

An extremely lucky lady

Another patient shares how she feels about how she was diagnosed with breast cancer.

Mammograms are the worst but essential, work and pick up cancer in time.

Digital sketch notes

Dr Susan Chalmers made some vibrant digital sketch notes during the workshops, visually summing up people’s experiences.

Digital sketch: Choice - radiation tattoos! There ARE alternatives, not standard everywhere, give us OPTIONS
It was a real privilege to hear the accounts from the various participants in the workshops. - Dr Susan Chalmers
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Photo of Dr Susan Chalmers

Hear from Susan

Susan is a senior lecturer at Strathclyde Institute of Pharmacy and Biomedical Sciences, looking at the cells of the brain and how these sometimes go wrong.

Pulling together thoughts and ideas

Susan enjoyed pulling together some of their ideas and thoughts about various treatments or stages of their disease. And then she also tried to capture some of the emotions of the journeys of these patients.

Digital sketch: Vest of dignity - You've got to go along to get along, flimsy paper covers, obedience, taking control

Question cards

One of the workshops involved a series of question cards.

Question card: Where does your story begin?
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Photo of Dr Yvonne McFadden

Hear from Yvonne

Dr Yvonne McFadden from the Scottish Oral History Centre is an oral historian working in gender histories.

I think the storytelling project was really valuable because ... it's allowed these women in a comfortable environment to tell their story and to make sure their story is heard. - Dr Yvonne McFadden

Women don't value their own stories

What we find when we interview women is that they’re not confident and they don’t value their own stories. And this is especially true in health narratives where the biomedical model is gendered.

A woman holding up a transparent green sheet of writing and drawing to the light
Photo of Morag Ross

Hear from students: Morag

Morag is a Masters of Pharmacy Dissertation student – hear how she’s excited to be involved in this field.

Hear from Karim

Karim Daramy is a PhD student, and a student volunteer on the project. Listen him talk about the benefits of the project.

Photo of Karim Daramy
As a scientist, I think it's important to engage with the public and ensure patients have access to the latest developments within the field.  - Karim Daramy
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A big thank you

We thank all the patients who shared their lived experiences with us and dedicate this to them and other patients with breast cancer.

Photo of everyone involved in the project

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