More than 85% of informal guardians have no status

Most of the informal caregivers who took part in the health literacy survey are unaware of their rights, meaning that more than 85% have no status or more than 90% have never used a caregiver’s vacation.

The study was conducted as part of the 8th edition of Saúde que Conta, a national research initiative under the scientific responsibility of the National School of Public Health, Lisbon Nova University and the National Association of Public Health, during which 790 people were interviewed.

Among the people in the study, nearly half (48.1%) say that access to information about their informal caregiving is “very poor”, which the study coordinator believes means these people do not know about your rights.

“When we look at the results, we find that informal caregivers are generally in poor conditions to be able to fully perform their functions,” said Ana Escoval.

The study coordinator said that “there are already some suggestions and some responses for caregivers”, but noted that “the information does not seem to be disseminated, and if it is disseminated, it is not disseminated properly”.

“There is an answer called rest for the caregiver. Giving the caregiver the opportunity to rest, and this has been available for a long time. A significant part of informal educators do not know.

According to the study, 93.5% of respondents do not use care leave, 27.7% even stated that they are not aware of its existence, and 17.9% state that the competent authorities have never offered it to them.

Ana Escoval noted that every case is different and that there will even be those who do not want to take advantage of this answer, refusing to go to the institution while the caregiver is away for some time, which, according to the researcher, only reinforces the need to “somehow [de resposta] supplement”, for example, “with multidisciplinary teams on certain days or hours, so that the informal caregiver has a place for himself.”

The study shows that 51.1% of these people have no support as an informal caregiver, with almost eight out of ten (78.9%) caring for one person, 47% caring for more than a year and less than five, and 37.6% providing care up to six hours a day.

Another aspect that shows a lack of literacy for the researcher is that 85.7% of respondents do not have the status of an informal carer, which leads Anu Eskoval to argue that strategies should be developed to make life easier for caregivers and “effectively make them less painful” . be able to perform these functions.

“This makes us think that it would be very important not only to give people more and better information, [mas] to get them to receive information in a more appropriate way so that people can benefit from what is already at their disposal, ”he said.

He also denounced the fact that many of the measures approved under the Statute of Care are not yet regulated, meaning “people can’t take advantage of them.”

Ana Escoval argued that there is a need to create “integrated social and health responses”, pointing to the need to work on strategies at the macro (political), meso (regional and district level) and micro (local level) using all existing structures.

The study also showed that there is a direct correlation between literacy rates and the quality of life or workload of the informal caregiver, as it has been shown that the higher the health literacy, the better the quality of life and less workload on the caregiver.

The data was collected via an online survey between November 2022 and February 2023.

The study sample consists of 790 valid responses (92.5% women and 7.5% men) with national coverage.

The study included only individuals who regularly/frequently care for and/or support someone in their daily activities due to physical or mental illness, incapacity/disability or old age and do not receive any remuneration for the care provided, excluding monetary support. from the unofficial status of a guardian.