Parents of a child with cancer carry out an immense amount of work every day — often invisible. The FOURMIS project, conducted in partnership between Imagine for Margo and Institut Mines-Télécom Business School and funded by the French National Cancer Institute (INCa), aims to understand their realities in order to better respond to their needs. After three years of research, listening and co-construction with affected families, here is what we have learned — and what we are preparing for the future.
What is the FOURMIS Project?
The FOURMIS project (2023–2026) explores the role that digital technologies can play in supporting parents caring for a child with cancer. It is coordinated by Anne-Laure Delaunay, Associate Professor at IMT Business School, in collaboration with Jamila Lahmar (PhD candidate at Paris-Saclay University), and Professors Amélie Clauzel and Nathalie Raulet-Croset. Imagine for Margo has been a partner since the beginning of the project, alongside INCa, which provides its funding.
The originality of the project lies in its approach: not starting from digital tools in order to impose them on families, but starting from families to understand how digital technology fits — or does not fit — into their daily lives. A rare approach that makes all the difference.
Key figures: 81 narrative accounts collected, 37 semi-structured interviews conducted, 3,135 Instagram posts analysed, and 44 digital solutions compared.
What the Research Reveals: Parent Caregivers Work
One of the first findings of the project is also the most powerful: being the parent caregiver of a child with cancer is work. Real, multidimensional work, but often invisible to institutions and society.
Parent caregivers simultaneously take on several roles: project manager, medical coordinator, translator between the hospital world and the outside world, emotional support, archivist, mediator… One of the mothers interviewed summarised this reality as follows:“I become both my child’s taxi driver, their nurse because I have to give them medication, their teacher because I support them with their schooling…”
This work is organised around three major dynamics highlighted by the research:
- Intensive information work: managing, filtering, interpreting and sharing complex flows of information — with healthcare professionals, administrations, schools, relatives and employers.
- Building a personal information system: each parent builds, often alone, their own tools and networks to cope, in the absence of suitable support systems.
- Needs that evolve over time: expectations and necessary resources are not the same at diagnosis, during treatment, when returning home or during the reconstruction phase.
The Caregiving Journey: 5 Key Phases
Research conducted as part of the FOURMIS project highlighted that the experience of parent caregivers does not follow the medical timeline of the disease. Parents go through their own subjective phases, marked by disruptions and transitions that existing support systems struggle to recognise.
1. The Disruption — the shock of diagnosis. Parents are overwhelmed and stunned by the amount of information received in a very short period of time, precisely when they most need guidance.
2. Becoming a Caregiver — a gradual transition during which the parent learns to take on a new role, often without structured support and in immediate action mode.
3. Routines — life becomes organised around treatments, but everything else — work, siblings, relationships — must continue to exist. Delegation becomes a major challenge.
4. Returns — returning home, to school, to work… a paradoxically difficult phase, marked by a significant sense of emptiness after the intensity of hospital life and by poorly anticipated setbacks.
5. Reconstruction — rebuilding a different normal life, looking ahead, and sometimes becoming involved in helping other families.
Parent Workshops: Co-Creating Relevant Solutions
Building on these findings, the FOURMIS project entered a new participatory phase in 2026: presenting these analyses to parents themselves and working together to develop concrete solutions.
Four workshops were organised:
- One in-person workshop on April 2, 2026, to generate initial ideas.
- Three online workshops (April 8, April 22 and May 6, 2026) to share, refine and prioritise proposals.
The central question asked to participating parents was: “If you had to help another parent caregiver today, which support systems would be the most useful?”
The discussions helped identify concrete priorities at each stage of the caregiving journey:
- At the disruption stage: practical guides available from diagnosis onwards (care pathways, rights and procedures, accommodation near hospitals, charitable resources), as well as a guide for relatives on how to provide practical support.
- When becoming a caregiver: informal discussion spaces within hospitals, the presence of an experienced “parent partner”, and a national platform connecting parents with one another.
- During routines: tools to help delegate everyday logistics, preserve family time and benefit from safe moments of respite within the hospital setting.
- For returns: webinars and guides to prepare for returning to work, school and family life — and to raise awareness among employers and managers.
- During reconstruction: opportunities for charitable engagement, “caregiver assessments”, and respite initiatives such as the Dana Escape weekend.
What’s Next? Towards FOURMIS 2
The workshops confirmed one conviction: research only has value if it leads to tangible actions for families. This is the ambition of the FOURMIS 2 project, for which a funding application is currently being prepared for submission to INCa.
The objective is to move from knowledge to creation. Based on the priorities identified by parents, the research team and Imagine for Margo will work together to develop, test and disseminate practical resources, which may take the form of:
- Practical guides for every stage of the caregiving journey.
- Training sessions and webinars for parents, relatives and employers.
- A structured, accessible and voluntary peer-support programme.
- Assessment tools to help parents navigate the reconstruction phase.
Much remains to be explored, but one thing is certain: this project is essential for supporting parent caregivers. It is fully aligned with Imagine for Margo’s mission to support families affected by childhood cancer with resources adapted to their real-life experiences, rather than to a simplified representation of what they go through.
Are You a Parent Caregiver — or Do You Know a Family Concerned?
The FOURMIS project was born from the conviction that no parent should have to go through this experience alone. If you would like to stay informed about future developments, benefit from the resources that will be created, or contribute to the discussion, please contact us at: communication@imagineformargo.org
Imagine for Margo supports more than 700 families affected by childhood cancer. Find out more about the association by clicking here.
Project funded by the French National Cancer Institute (INCa), reference INCA_18639.
Partners: IMT Business School, Paris-Saclay University, IAE Paris Sorbonne, Imagine for Margo.