Several million French people regularly come to the aid, each year, of one or more people losing their autonomy, without this being perceived as a professional activity. They are rightly called caregivers, family caregivers or family caregivers. But whatever their denomination, the observation remains the same: they suffer from isolation, exclusion and exhaustion. The day after National Carers’ Day, we look back at an Unapei survey which shows the extent of this distress, as well as the impact that this role can have on personal and professional life.
Some 9.3 million people “declare that they provide regular assistance to a person with a disability or loss of autonomy living in the same home or elsewhere” in Europe, including 500,000 minors aged 5 or over, according to a survey made public by the Directorate of Research, Studies, Evaluation and Statistics (Drees). Among them, no less than 3 million people aged 5 and over say they provide both help with daily living and moral support. A role which is not without consequences on the daily lives of these caregivers, as revealed by a quantitative and qualitative survey conducted by Unapei, with Planète Publique, on the occasion of the 14th National Carers’ Day.
The study focuses more specifically on 3,940 parents of children with disabilities (neurodevelopmental disorders, multiple disabilities or mental disabilities) of all ages, including 80% women. It has two parts, quantitative and qualitative, the second based on fourteen interviews carried out remotely. Among the main lessons is the psychological distress faced by these parents, whether due to a feeling of isolation or exclusion, a lack of recognition, or the impossibility of being able to make their own decisions. choice whether with regard to their personal life or their career.
A feeling of unease and isolation
“Well-being is an adaptable concept. For me, it’s not going to a restaurant as a couple or going to a spa with friends. It’s more like sitting on the couch for five minutes without seeing your child cry or feel bad. Well-being is seeing my child laugh“, explained Marion, one of the people interviewed for the purposes of the survey. Which reveals that only 43% of the parents surveyed feel happy, compared to 68% of the general population (in 2018), and almost a A quarter feel pessimistic and discouraged, compared to 11% of the general population. “We constantly ask ourselves: what is best for my child? How do I know if he’s okay? Are my choices the right ones? It’s a big responsibility and the body takes on a lot,” says another mother.
Nearly half of respondents (46%) also consider that society’s view of the role of parent of a person with a disability is negative, and nearly six in ten (57%) say they feel alone compared to to their situation. The lack of appreciation, as well as the absence of free time or leisure activities, also contribute to the deterioration of the mental health of these parents. Nearly a quarter of them (23%) say they feel excluded from society, and 45% say their role is not properly recognized, while more than half of those surveyed say they have no rarely have time to indulge in activities synonymous with pleasure. Ultimately, 74% of respondents do not think they are free to choose their life.
“This survey reveals how numerous the repercussions of the disability situation of their loved ones are on the daily lives of parents. Yet they cannot bring themselves to have to choose between their child’s life and their own. If parents share the same priority, that is to say the guarantee of lasting support for their child, their needs must also be listened to. Society as a whole must get involved with them“, explains Nadine Maudet, vice-president of Unapei.
An impact on professional life
The role of family caregiver does not only have an impact on the life course of those mainly involved, it also impacts their careers. A large part of the panel (54% and 62% respectively) mentions an influence on the choice of profession and on career development. As such, nearly two thirds of respondents (64%) believe that potential professional reorientations are insufficient to overcome the disadvantages of their situation. “We reduce our working hours, we opt for a position with freedom of time and more flexibility. I didn’t really have the career I wanted to have“, confides Mohamed, one of the parents interviewed by Unapei.
And that’s without taking into account the concerns that parents of children with disabilities must face about the future, although 84% of respondents indicate that they are proud of the progress they have made with their child(ren). ). An overwhelming majority (95%) report a certain apprehension about the future of their child(ren) after their death. “I am now 75 years old, the years go by and I worry about my son’s future. What will become of him? That’s the big question. I am supported by my family but not by society“, deplores a mother.
Faced with this observation, Unapei has established a list of twenty-one proposals to help parents and their loved ones. This includes improving support for people with disabilities, creating and developing relay solutions, supporting caregivers by regularly assessing their needs and expectations, and strengthening certain supports.
The survey is made up of a main quantitative component and a complementary qualitative component. The first is based on an individual online self-questionnaire, essentially composed of closed questions, but largely based on response scales, collected from January 28 to May 24, 2023. The qualitative component was based on 14 semi-structured interviews at distance (telephone or videoconference), with a purposive sample of parents who agreed to be contacted again when responding to the questionnaire.