L’ESSENTIEL

• Lorsqu’un diagnostic de cancer touche un enfant, le quotidien et l’équilibre de la famille se recomposent.

• Les parents passent alors par trois grandes phases : rupture, routines et retour (après l’hospitalisation).

• Contrairement à ce que peut percevoir l’entourage, la fin des traitements intensifs n’est pas synonyme de reprise de la vie « d’avant ».

Lorsqu’un enfant est atteint d’un cancer, toute la famille entre, à des degrés différents, dans la maladie.

Valérie Donzelli l’a filmé dans la Guerre est déclarée (2011) : du jour au lendemain, parents et enfant voient leur quotidien basculer autour des soins, des décisions et de l’incertitude. Dans la série Tout va bien (2023), de Camille de Castelnau, prolonge le témoignage. Ces récits mettent en lumière une spécificité du cancer pédiatrique : les parents sont immédiatement engagés dans le parcours de soins.

Ils sont les représentants légaux de l’enfant, prennent part aux décisions et organisent sa prise en charge. Ils doivent aussi l’aider à comprendre ce qui lui arrive, le rassurer et l’accompagner pendant les traitements, dans un contexte où le lien affectif rend cette implication particulièrement intense.

Cette place singulière transforme le quotidien des parents, leur vie professionnelle, leurs relations conjugales et familiales, mais aussi leur manière d’envisager l’avenir. Et ces effets évoluent au fil de la maladie.

C’est cette trajectoire parentale, du diagnostic aux traitements puis aux retours qui suivent l’hospitalisation, que nous avons cherché à comprendre pendant près de trois ans, en partenariat avec l’association Imagine For Margo. Voici ce que nous avons appris.

Une étude sur trois ans

Nos travaux ont débuté par la diffusion d’un questionnaire en ligne auprès de parents aidants. Nous avons ensuite mené 37 entretiens d’environ une heure avec des parents volontaires. Le panel comprenait 31 mères et 6 pères.

Cette surreprésentation maternelle est également observée dans la recherche en oncologie pédiatrique, dans un contexte où les mères tendent sociologiquement à plus souvent assumer les soins et les pères le soutien financier.

Les profils des répondants sont variés : en couple ou en famille monoparentale, habitant en ville ou à la campagne, en région parisienne ou en province, avec un ou plusieurs enfants.

Nos résultats font apparaître trois grandes phases dans la trajectoire des familles : la rupture provoquée par le diagnostic, l’installation de routines pendant les traitements à l’hôpital, puis le retour à domicile et la reconstruction qui l’accompagne. Rupture, routines, retours : ces « trois R » dessinent les grandes lignes de la trajectoire d’aidance.

La rupture

Vécu comme un « choc physique et émotionnel » (les verbatims entre guillemets sont issus du matériau empirique collecté pendant notre recherche auprès de parents aidants d’enfants atteints de cancer, NdA), le diagnostic place les parents dans une phase de sidération.

Ils sont rapidement pris dans un tourbillon médical et logistique, auquel s’ajoute la charge émotionnelle de l’annonce. À ce stade, leur première difficulté est de comprendre ce qui leur arrive.

Médulloblastome, leucémie aiguë myéloblastique, néphroblastome : le nom de la maladie s’ajoutent à ceux des traitements, des interventions et des dispositifs médicaux. Mais, lorsqu’il s’agit d’un enfant, comprendre le jargon médical ne suffit pas.

Le parent doit aussi trouver les mots pour expliquer ce qui se passe, répondre aux questions, préparer l’enfant à une opération, à une chimiothérapie ou à la perte de ses cheveux. Il cherche aussi à rendre l’épreuve plus supportable, par des cadeaux, des attentions, des rituels ou simplement une présence constante. Il doit enfin répondre aux questions des proches et les tenir au courant.

Durant cette période, beaucoup de parents mettent leurs propres besoins entre parenthèses pour se concentrer sur ceux de leur enfant. Ici commence véritablement l’entrée dans l’aidance.

Les routines

Passée cette phase de crise, l’enfant débute les traitements et la vie familiale s’organise progressivement autour de leur rythme. Chimiothérapie, radiothérapie, chirurgie, immunothérapie ou protonthérapie (une forme de radiothérapie très précise) peuvent se succéder pendant plusieurs mois ou années selon les protocoles. Le parcours reste éprouvant et imprévisible, mais parents et enfants finissent par développer leurs propres repères.

Ces « routines » ne doivent pas s’entendre comme un retour à un quotidien stable. Elles désignent plutôt une manière d’apprendre à vivre sous contraintes. En effet, l’hôpital reste un lieu de travail avec ses hiérarchies et ses règles. Ni membres de l’équipe soignante ni simples visiteurs, les parents doivent y trouver leur place.

Ils endossent aussi de nouveaux rôles, qui s’ajoutent à leur rôle parental :

« Je deviens à la fois le taxi de mon enfant, je deviens son infirmière parce que je dois lui donner des médicaments, je deviens sa maîtresse parce que je l’accompagne sur la scolarité… »

Ils préparent un sac pour les hospitalisations d’urgence, afin d’anticiper les périodes d’aplasie (effet secondaire de certaines chimiothérapies se traduisant par une forte diminution des globules blancs et une baisse des autres composants du sang, globules rouges et plaquettes, ndlr). Ils connaissent les routines hospitalières : l’heure du bain de l’enfant, celle de la tournée des médecins ou des « embouteillages » à la douche commune des parents, les endroits où acheter de quoi manger…

Ils retrouvent aussi les mêmes visages dans les couloirs : des soignants et parfois d’autres parents avec lesquels des liens peuvent se nouer. L’accompagnement de l’enfant malade reste souvent entre leurs mains. L’entourage prend le relais pour faire tenir le reste du foyer : repas, ménage, linge, trajets.

La fratrie occupe une place particulière dans cette organisation. Profondément affectée par la maladie, elle reste pourtant largement oubliée dans la prise en charge et dépend souvent de ces soutiens informels des proches pour préserver un quotidien aussi stable que possible.

Le retour au domicile (et le retour de bâton ?)

Lorsque les séjours à l’hôpital s’espacent, voire disparaissent, une nouvelle phase commence. Le retour au domicile s’accompagne du retour à l’école pour l’enfant et, souvent, du retour au travail pour le parent qui avait réduit ou mis entre parenthèses son activité professionnelle.

Cependant, quelle que soit la situation médicale (rémission complète ou incomplète, tumeur en dormance, traitement d’entretien) de leur enfant, tous les parents décrivent une reconstruction difficile à négocier :

« Donc il faut reprendre une vie normale, mais reprendre une vie normale quand on a vécu tout ça… on ne reprend pas notre vie d’avant, en fait. »

Ce retour au domicile éloigne aussi les parents du cadre hospitalier, de ses routines et de ses repères. La proximité avec les soignants diminue, tandis qu’autour d’eux la vie reprend son cours et que les coups de main des proches se raréfient.

Or, la fin des traitements intensifs ne signifie pas la fin de la maladie : traitements à domicile, rendez-vous de contrôle, suivi des séquelles, retour à l’école, démarches administratives… Une partie de ce qui était organisé par l’hôpital revient ainsi vers la famille, alors même qu’elle doit retrouver une place dans une vie ordinaire.

Les parents apprennent aussi à vivre avec les risques de rechute et les effets à long terme des traitements. Comme l’un d’eux le résume :

« C’est vraiment l’épée de Damoclès l’exemple le plus parlant. Même par rapport à nos familles les plus proches, c’est l’épée de Damoclès. Ils ne se rendent pas compte qu’en fait le cancer est entré dans votre famille et il n’en sort jamais vraiment, même [après] cinq, dix, quinze ans. »

De l’extérieur, cette phase peut être perçue comme une sortie de crise. Cependant, pour certains parents, elle correspond à un contrecoup après des mois de mobilisation intense ; pour d’autres, à une forme de chronicité où la maladie reste présente, mais devient moins visible.

Les fragilités physiques et psychiques accumulées pendant les séjours à l’hôpital peuvent alors devenir plus difficiles à contenir.

Adapter les dispositifs de soutien

Rupture, routines, retours : ces « trois R » dessinent donc les grandes lignes de la trajectoire d’aidance pour les parents qui doivent faire face à l’épreuve que représente le cancer de leur enfant.

En partant de nos résultats, nous avons construit, avec une vingtaine de parents, une feuille de route adaptée à ces différentes phases de l’aidance : accéder à la bonne information au bon moment, accompagner la reconstruction du projet de vie après le cancer et explorer les usages émergents de l’intelligence artificielle (IA) conversationnelle.

Cette feuille de route accorde une attention particulière au temps du retour, lorsque l’hôpital s’éloigne, mais que les effets de la maladie persistent. À ce titre, nous souhaitons proposer à l’avenir un bilan aux parents ainsi qu’un partage de témoignages d’autres personnes ayant vécu la même expérience (on parle de « pair-aidance »), notamment sur l’après-maladie, le retour au travail ou la reprise du quotidien.

Anne-Laure Delaunay est coordinatrice du projet intitulé "rôles des technologies dans le soutien des parents aidants d'enfants atteints de cancer", financé par l'Institut National du Cancer et réalisé en partenariat avec l'association Imagine For Margo

Amélie Clauzel et Jamila Lahmar-Eythrib ne travaillent pas, ne conseillent pas, ne possèdent pas de parts, ne reçoivent pas de fonds d'une organisation qui pourrait tirer profit de cet article, et n'ont déclaré aucune autre affiliation que leur poste universitaire.

As students, academics and university personnel across Europe head back to university, very few are aware that their university is likely to be part of the European University Initiative. Cooperation across European universities strengthened in 2019 with the launch of European university alliances, a project supporting the internationalisation of European higher education, testing action plans and setting priorities for long-term strategic institutional transformation (Estermann et al., 2021).

There are now over 65 European university alliances, encompassing more than 570 higher education institutions and 11 million students across Europe. Described as flagships of the European University Initiative, they aim to improve the international competitiveness of higher education in Europe, promote European values and identity through greater mobility. Joint or dual degrees with different European universities, or the European Student Card were developed with this in mind.

These initiatives among European higher education institutions are key in forging European identity and developing key skills in a context of growing global competition and societal challenges. Europe’s higher education strategy was built on two pillars: education and research & innovation.

The two pillars of universities: teaching and research

In terms of teaching, the Erasmus student mobility program for education, vocational training, youth and sport is undoubtedly the best-known EU initiative. Launched in 1987, Erasmus has now morphed into Erasmus+. The program paved the way for the Bologna Process, started in 1999 when 29 countries expressed their willingness to commit to enhance the competitiveness of the European Higher Education Area through the progressive forging of a unified educational space, leading to the standardisation of higher education degrees into the 3-5-8 cycle (Bachelor-Master-Doctorate) and the development of the European Credit Transfer System (ECTS).

As for the second pillar, framework programmes to develop cooperation in research and innovation have been ongoing since 1984 and have evolved into the Horizon research funding programmes.

A single, borderless market for research

In 2000, the European Commission launched the European Research Area (ERA). Echoing the “four freedoms” of the European single market area: free movement of goods, capital, labour; freedom to establish and provide services, ERA is described as “a single, borderless market for research, innovation and technology across the EU where countries come together and improve their research policies and systems and where there is free movement of researchers, knowledge and innovation.”. This fifth freedom has been further emphasised in the Letta policy report (April, 2024), so named after former Italian Prime Minister Enrico Letta.

Dwelling on ERA’s objective, the current Horizon Europe programme (2021-2027) with a budget of 93.5 billion euros aims to “facilitate collaboration and strengthen the impact of research and innovation in developing, supporting and implementing EU policies while tackling global challenges”.

Bridging the two pillars and accelerating the transformation of European universities

Horizon Europe attempts to bridge the two pillars supporting higher education through the integration of research & innovation into the European University Initiative.

Among the funded projects, aUPaEU 2 has brought together five universities belonging to two alliances – Epicur European University and Unite! – University network for innovation technology and engineering – to develop a modern-day agora, a shared digital space for researchers, businesses, and citizens with the aim of enhancing collaboration, strengthening relationships, and transferring knowledge to the economy. The acceleration services under development are as varied as the potential users. These include a directory listing researchers’ area of expertise, access to funding, collaboration opportunities, guidelines for researchers’ career management, open science, gender equality. Mirroring common research project management practices, each member university is responsible for a specific work package and contributes deliverables to the European Commission, which is designed to ultimately inform higher education policy.

Early findings from interviews and focus groups with different users highlight the digital Agora’s potential opportunities but also the tensions that need to be addressed to foster sustainable collaboration for research and innovation across universities.

Short-term funding versus long-term transformation

aUPaEU like most projects within the European University Initiative is a five-year pilot project. This short-term horizon is supposed to allow experimentation and flexibility.

However, it comes at odds with the ambition of developing long-term strategic institutional transformation. The uncertainty at the end of the five-year funding makes it difficult to establish a long-lasting governance model and strategy for collaboration in R&I.

Enabling online trust

Trust is at the heart of collaboration. Traditionally, academic conferences, lab visits, word of mouth have triggered personal connections and research collaboration. While online platforms can help facilitate knowledge-sharing processes, trust enabled knowledge-sharing remains dependent on offline interaction (Aalbers and Whelan,2021). Finding the right balance between online and offline connections will be necessary. The fragmentation of digital infrastructure, with a number of platforms and tools already in use, raises questions about the Agora’s added-value. Ease of use and compatibility with existing tools will be key for adoption.

Visibility and engagement

University alliances are reshaping European university education unknown to most of their stakeholders – students, academics and staff. Beyond a core group of actively engaged contributors to the work packages, alliances, with their complex governance structure, remain vaguely understood, remote from the reality of the day-to-day run of activities. Differences in national education systems, the prevalence of local concerns, cultural and language differences (Taylor, D. A., & Corbett-Etchevers, I., 2025) make it challenging to foster a sense of collective identity across European universities.

Yet, it is precisely this awareness to shared values, such as commitment to inclusion and diversity, innovation, the green transition and high-quality higher education, which can pave the way towards a truly transnational European University.

A weekly e-mail in English featuring expertise from scholars and researchers. It provides an introduction to the diversity of research coming out of the continent and considers some of the key issues facing European countries. Get the newsletter!

Isabelle Corbett-Etchevers is a member of the aUPaEU project which received funding from the Horizon Europe Framework Programme under Grant Agreement No 101095314

KEY TAKEAWAYS

• In July 2026, US Secretary of State Marco Rubio affirmed his intention to dismantle the International Criminal court.

• The offensive is part of a series of attacks on international courts, notably through sanctions targeting legal proceedings and the judges and officials involved.

• While such sanctions are intended to weaken these institutions, they also bear witness to the enduring strength of international law. They demonstrate that the language of the law remains indispensable and reveal the fear sparked by the lasting impact of the legal characterisation of crimes.

In The Autumn of the Patriarch (Gabriel García Márquez, 1975), the ageing dictator takes pleasure in just one thing: watching his fallen former colleagues playing cards in the room set aside for their exile, and revelling in their destitution and obsequiousness toward him. This portrayal of ageing power – obsessed with its own survival and with the spectacle of the downfall of once untouchable leaders – captures the fear of the moment when power ceases to protect those who once wielded it.

Contemporary attacks on the International Criminal Court (ICC) and international mechanisms for investigating human rights violations echo this sense of time, this fear of losing impunity, and bring to the fore the effective power of international law. The US sanctions are less aimed at what these institutions can do that will challenge US sovereignty today than at what they might set in motion tomorrow. In addition to an arrest warrant, there may be a preliminary legal classification and proceedings, followed, why not, by a judgement and conviction. But even more importantly, even if this is not fully achieved, international judges will play a central role in determining the legitimacy of condemning their actions as crimes and in determining how to characterise their epoch and regime, as the legacy of Nuremberg reminds us.

Therefore, the United States’ relentless campaign against international justice is not a sign of a calm and self-assured sovereignty. On the contrary, it betrays a deep-seated fear: that the legal language will outlive the political protections of the moment, and that those who believed they were protected by power may be caught up forever by the legal classification of their actions and their reputation.

In late July 2026, the US offensive against the international justice system crossed a threshold. This is no longer merely a matter of ad hoc sanctions against International Criminal Court officials or isolated figures within the United Nations. In mid-July, US Secretary of State Marco Rubio announced a diplomatic campaign explicitly aimed at ‘dismantling’ the ICC, which is accused of encroaching on US sovereignty and threatening US officials, military personnel and political leaders.

This announcement extends Presidential Executive Order 14203, adopted by Donald Trump in February 2025, which declared a ‘national emergency’ in response to the court’s allegedly ‘illegitimate and unfounded’ actions targeting the United States and its close ally, Israel.

Gaza lies at the heart of the crackdown. US sanctions, which are explicitly intended to sanction individuals “directly involved in the illegitimate targeting of Israel”, have been extended to other individuals and institutions: ICC judges, United Nations Special Rapporteurs, Palestinian human rights organisations and civil society actors involved in documenting possible international crimes in Gaza and, more broadly, in the occupied Palestinian territories.

The ICC’s investigation into the situation in Palestine, the arrest warrants for Benjamin Netanyahu and Yoav Gallant, the United Nations report and the work of Palestinian and international NGOs all provide opportunities for the legal characterisation of crimes that the US offensive seeks to delegitimise.

The issue is therefore not merely diplomatic or a specific form of lawfare. It concerns a more fundamental question: who can still legally name the violence perpetrated by the powerful and their allies, who can deliver justice to victims at international level?

Turning judges into the accused: the reversal of the accusation

The most striking feature of this sequence is the reversal of the accusation. Those investigating international crimes become the accused. Judges, prosecutors, rapporteurs and NGOs are no longer presented as actors seeking to establish accountability, but as threats to sovereignty, national security or political neutrality.

This shift is decisive. Instead of asking whether populations have been bombed, starved, displaced, persecuted or deprived of the basic conditions for survival, the debate is redirected toward those who raise these questions: has the prosecutor overstepped his mandate? Is the rapporteur an activist? Is the court biased? Are the organisations documenting the crimes politically motivated?

This strategy of reversal creates what might be called a ‘punishment of the right to judge’. US sanctions transform the act of investigating, legally characterising crimes and holding people to account for behaviour that is deemed suspicious, hostile and punishable. This reversal is not merely a matter of rhetoric. It is embodied in concrete measures: asset freezes, visa restrictions, transaction bans, and pressure on institutions that cooperate with or enter into dealings with the targeted individuals or entities.

The person who names the crime becomes the focal point around which risk and risk management are organised.

What the sanction unwittingly acknowledges

It would be tempting to see these sanctions as proof of the impotence of international law. In fact, the opposite is true. If the ICC, the Special Rapporteurs or documentation NGOs were insignificant, there would be no need to sanction them.

In this sense, the sanction is an unwitting admission. It acknowledges that reports, arrest warrants, legal characterisations, advisory opinions and international investigations retain the capacity to undermine impunity. Their strength does not always lie in immediate coercion. The ICC does not have a global police force; Special Rapporteurs do not issue enforceable judgements. But their words circulate and find their way into archives, the media, social movements, national legal proceedings, diplomatic debates and collective memories.

What is feared, therefore, is not merely judicial condemnation, but the sedimentation of a legal classification: the fact that an act of violence is permanently recorded as a crime, rather than as a mere military operation, a security necessity or regrettable collateral damage.

This does not mean that international justice should be idealised. It has always been shaped by selectivity, power relations and imperial legacies. But the current sanctions clearly do not challenge international law on the grounds of these biases; on the contrary, they exploit them to prevent certain powerful figures, or their allies, from being named and judged by institutions over which they have no control.

When legal avenues are used against the law

The acknowledgement of the power of the law also lies in the fact that the United States does not merely respond with extra-legal threats to undermine international justice. It produces its own administrative law against those who use international criminal law and human rights laws: presidential decrees, sanctions lists, administrative procedures, compliance obligations. Instruments designed to combat terrorism, proliferation, money laundering or illicit financing are redirected toward judges, investigators, rapporteurs or human rights organisations.

The attack on international justice thus presents itself in the guise of legality. Except that the logic is obviously not that of an adversarial trial, with evidence, public debate and detailed reasoning. It is that of listing: a person or entity is designated as a risk, a threat or a prohibited actor; this designation then triggers a chain reaction.

The difference is fundamental. A judgement presupposes a procedure, adversarial proceedings, a statement of reason, and a case file that can be challenged. An administrative sanction does not constitute a legal conviction in the traditional sense. Being placed on a list works differently: it identifies a risk and leaves it to the administrative, financial and digital infrastructures to draw their own conclusions.

This approach is all the more effective because it relies on the diligence of intermediaries. Banks, digital platforms, airlines, hotels, universities, NGOs, insurers and service providers do not always need to be directly compelled to act. It is sufficient for them to anticipate the risk.

Punishment through everyday infrastructure

This is why these sanctions should not be seen merely as symbolic measures targeting high-profile individuals. Their impact is felt through the ordinary infrastructure of everyday life and work.

Cases that have already been documented include cancelled bank cards, closed online accounts, suspended Google or Amazon services, difficulties in booking a hotel, disrupted banking relationships, and financing that has been slowed down or blocked. The sanction does not merely alter what the targeted individual can do; it alters what others are prepared to do with them. Should we maintain this invitation? Reimburse this travel? Host this conference? Cooperate with this NGO? Fund this programme? The risk is contagious.

Taken in isolation, each incident may seem minor. Taken together, they form a kind of infrastructural punishment. Yet international justice also depends on very mundane matters: flights, visas, hotels, databases, digital subscriptions, secure communication tools, institutional reimbursements, banking services, translations, archives, and academic and civil society collaborations. Disrupting these channels is tantamount to attempting to interfere with the very possibility of investigating, writing a report, preparing an arrest warrant or supporting victims.

Such an attempt may well succeed, since in an environment of sanctions, institutions often prefer to exclude too broadly rather than risk being accused of not excluding enough. A false positive costs less than a false negative: in other words, caution seems less costly to them than facing a challenge.

Beyond the judges: the third-party authority under attack

The US offensive against the ICC and against those involved in international justice is therefore not directed solely at a particular institution. It targets the very possibility of a third-party authority: a body capable of describing violence in terms other than those used by the states that perpetrate or support it.

The rhetoric of sovereignty plays a central role here. It portrays the ICC as a foreign intrusion, even though the Court is founded on the Rome Statute, adopted by sovereign states, and exercises its jurisdiction only under limited conditions. As the UN reiterated in July 2026, the ICC remains an ‘essential cog’ in the fight against impunity for the most serious crimes.

What is at stake is not so much a simple conflict between sovereignty and international law as a struggle over who has the authority to characterise violence. The most powerful states readily accept international law when it targets their adversaries. They reject it when it purports to apply to themselves or their allies.

International law that had become entirely harmless would not provoke such fierce opposition. What these sanctions reveal is not the death of international law, but the intensity of the struggle over what it can still achieve: defining a crime, establishing liability, and keeping open the possibility that state violence might be judged by someone other than those who justify it.

The European International Studies Association in Lisbon will devote a panel to this topic from September 1st-4th.

The journal Cultures & Conflits will, in 2027, devote an entire issue to the issues raised by the sanctions. It will follow on from the 2025-2 issue on the symbolic power of the law, available on Cairn. Proposals for articles and personal accounts relating to international sanctions should be sent now to Cultures & Conflits at redactionagc@gmail.com.

Didier Bigo is a Co-Editor with Cultures et Conflits (CAIRN-CECLS) and Political Anthropological Research on International Social Sciences (PARISS).

Rebecca Mignot-Mahdavi codirects the AI-NODES project (part of the PostGenAI@Paris cluster) and benefits from a government grant from the French National Research Agency under France 2030 (registered as ANR-23-IACL-0007).