Narrative Pathway

The #ENDOs project also includes a narrative medicine pathway, which aims to analyse and identify a lexicon used by persons 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 medicine 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:

Improve doctor-patient communication by reducing lexical ambiguity and the unspoken
Shorten diagnosis times
In training in narrative medicine in European hospitals and healthcare facilities
As a resource in digital educational apps 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 be carried out through the digital platform DNMLAB, where people with endometriosis are invited to share their experience of the illness.

The platform is user-friendly and accessible through any digital device (smartphone, PC, tablet, etc.). It is 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 disease 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: the narrative prompts will be designed to encourage reflection on issues that are important to people with endometriosis

The narrative prompts have been created thanks to the artistic contribution of a group of artists and patients who have transformed their illness experience into installations and artistic performances.

The research will be carried out in collaboration with various European patient associations and healthcare organisations in Italy, Ireland and France. The aim is to involve 80-100 people per country, reaching approximately 320 patients in total.

To achieve this, the DNMLab platform will be made available in three different languages (Italian, English, French).

Do you want to be part of this journey ?

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 enter the platform.
The first time you log in to 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 the prompts or ignore them.

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 is all, All you have to do is enjoy the journey !