Narrative Pathway
The #ENDOs project includes a narrative pathway, which aims to analyse and identify a lexicon used by people with endometriosis to describe their experience of the disease. The aim is to promote greater awareness among ENDOs of their condition through the use of narrative methods and tools, based on the premise that words and metaphors have the power to transform and influence the experience of illness.
A lexicon will be identified to create a Narrative and Emotional Dictionary that collects a common language between patients and healthcare professionals.
The Emotional Narrative Dictionary will be used to:
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- Improve doctor-patient communication by reducing lexical ambiguity, linguistic misunderstandings and lack of awareness.
- Shorten diagnosis times.
- In narrative medicine training in European hospitals and healthcare facilities.
- As a resource in digital educational applications for healthcare professionals, researchers, digital communities, etc. to better understand and describe the disease from the patient’s perspective.
- As a resource for artists to create visual representations of the emotions, experiences and metaphors surrounding the endometriosis experience.
DNM Plateform
The collection of narratives will take place through the digital platform DNMLAB, where people with endometriosis are invited to share their experiences of the disease.
The platform is user-friendly and accessible through any digital device (smartphone, PC, tablet, etc.). It has been designed with the aim of promoting patient empowerment and self-advocacy, in full compliance with the EU General Data Protection Regulation (GDPR).
Individuals are invited to respond to a series of narrative prompts: short, open-ended sentences that guide self-expression, detailing their experience of care and allowing needs, treatment expectations and existential aspects to emerge. The overall aim is to explore the impact of the illness and treatment on quality of life and the metaphorical meanings associated with the illness.
The narrative prompts are designed to:
- Encourage personal reflection: people are asked to reflect on their experience of the illness and the emotions associated with it.
- Encourage creativity: people are encouraged to go beyond literal description and engage in creative thinking and responses.
- Focus on key issues: people are encouraged to reflect on issues that are important to them.
The narrative prompts have also been created thanks to the artistic contribution of a group of artists and patients who have transformed their experiences of the disease into installations and artistic performances.
The research is being carried out in collaboration with various European patient associations and health organisations.
Do you want to be part of this journey ?
If you want to contribute to this project, you must live in one of these countries: Italy – France – Ireland, and speak one of these languages: Italian – French – English.
If you are willing to participate, click on this link and provide an email address.
You will receive:
- An email invitation with a link that will take you directly to the DNMLAB platform.
- A temporary password that can be changed once you are on the platform.
The first time you register on the platform, you’ll be asked to accept the privacy policy.
From that moment on, you’ll have access to a personal diary that is completely private. You will be guided in your storytelling journey by some narrative prompts. You are free to answer or ignore the prompts.
You’ll be able to access the platform at any time from any device (PC, smartphone, tablet, etc.). Just connect to this website and enter your email address and the password you created when you registered.
That’s it, all you have to do is enjoy the journey!