In 2019, the government launched a mobilization and support strategy for carers , finally making visible those who on a daily basis work alongside “a loved one with a loss of autonomy for reasons related to age, disability , chronic or disabling disease.
The question of aid was late in the political debate. However, with the aging of the population and the development of chronic diseases, the number of carers will automatically increase in the years to come. According to a national Ipsos-Macif survey carried out in 2020, nearly 3 out of 10 French people aged 18 and over, i.e. 11 million people, take on the role of carer by assisting a disabled person, or elderly dependent or still sick not being able to live alone or sometimes a person presenting the three situations at the same time.
Caregivers are on average 49 years old and 60% are women. On the occasion of a university research symposium organized in 2021 on the figures of the patient, the carer and the carer by the University Clermont Auvergne, in connection with the University of Lorraine, the communications and testimonies showed how much it was urgent to act and how young carers remained actors in the shadows, unaware of their status, subject to many tensions in a context of increased isolation and often far from arrangements for carers.
From invisible to complex life
The significant commitment of caregivers has a strong impact on their daily lives, as evidenced by studies and research on this subject. They highlight the impact on the caregiver’s health, on their social and family life (isolation, mistreatment of the person being cared for, upheaval within the family) and their standard of living (ignorance of existing mechanisms ), his professional life (management and organization of working time, difficulty reconciling with the role of carer, access to employment, etc.).
If we all have in mind among our acquaintances and relatives of caregivers, we know less than 500,000 caregivers are aged 18 to 24 and for a very large part of them combine support for a loved one with their studies. Most of these young people do not necessarily see themselves as carers and have to manage, in addition to their studies, a logistical, mental and financial burden which has an impact on the conditions in which they are trained and, therefore, on their health. Most limit themselves in their professional ambitions.
The very limited research conducted on this particular population of carers highlights the strong negative impact of caring responsibilities on the physical and mental health of student carers, their academic performance and their financial situation. In the United States, the National Alliance for Caregiving estimated in 2020 at 21.6 hours per week on average the time spent caring for loved ones.
There is a need to rigorously document this life situation to fill the lack of demographic information and provide elements of detail on the activities of these students and the impact (certainly considerable) that this has on the management of their academic commitments: less time available to study, experiences of anxiety and worry, and the feeling of being overloaded with responsibilities, all in order to be able to provide appropriate responses. But it has to be said, and rather strangely, that the status of the helping student has hitherto received little attention.
Too timid actions
Very few universities have taken up the subject. In Italy, in 2021, the Federico II University set up a project to welcome family caregiver students. This recognized and highly supervised status allows access to facilities and services, but this example remains an exception in the academic world. And yet, universities have been able to adapt their rules and bring flexibility to their operating methods to meet the needs of certain student populations such as student entrepreneurs or high-level athletes.
While student entrepreneurs and athletes enjoy a special status in French universities, it is time to think about the status of student-helpers. This one would usefully support those who on a daily basis try to organize themselves, not without difficulty, to support a loved one.
Not trying to draw the light on them, student helpers are not identified today, which does not make it easier to take their situation into account. Discreet, “my situation, I don’t have to talk about it” when he can admit “needing help with the organization” admits a helping student while acknowledging “to be proud to allow his grandparents to to be able to stay at home despite their state of dependency”.
Research on the experience of student carers in Scotland in 2020 is one of the few studies produced on this population. It highlights the difficulties of these students and leads them to review their professional ambitions, but it also outlines useful avenues .
A global approach
In France, there are various student statuses such as the national status of student entrepreneur or student athlete. The student entrepreneur is subject to a national status launched in 2014. It allows them to build and develop their entrepreneurial project as part of their university course in addition to benefiting from support. It brings recognition and a certain number of advantages (support, possibility of testing one’s activity before creating a structure, training in entrepreneurship and management, etc.). Since 2014, more than 6,000 students and young graduates under the age of 28 have benefited from this scheme.
The status of high-level sports student was created in 2015. It allows sports students to continue their studies while practicing their sport. It makes it possible to benefit from teaching arrangements, examinations, derogations for the extension of the years of study to validate their diploma and extension of the duration of study grants.
We may be surprised that, in this context, there is still no student helping status. However, the latter could provide answers to a difficult student’s daily life:
- on the pedagogical level: flexibility in the organization of lessons and access conditions;
- on the social level: connection with university social services, associative and institutional structures in connection with assistance;
- on the psychological level: support by the central and local university health services, contact with the professionals concerned, discussion groups;
- and on the informational level: rights, funding, practical information, practical training on the assistance to be provided to the person accompanied by the caregiver.
The status of helping student would force the French university system to reflect on a global approach to the support provided which integrates, as we have just seen, multiple dimensions. The conditions of access would be defined with regard to the regulations in force which specify the links between the person being cared for and the carer. They could be presented to students at the start of the new academic year by the competent services.
This action would allow them to become aware of their situation as caregivers and would probably facilitate their reporting to the medico-social services. There is therefore a real social issue in putting this issue on the agenda.
Author Bios: Corinne Rochette is University Professor in Public and Health Management HDR, Holder of the Health and Territories Research Chair, Christine Larguier is Lecturer in management sciences and Christine Roussat is HDR Lecturer all at Clermont Auvergne University (UCA)