Who cares for the carers? In Spain, non-professional caregiving is a hidden and often ignored reality

In Spain, more than four million people live with some kind of disability. Many of them have a caregiver to hand, who carries out an essential role and who has not, in general, been the object of a great deal of attention, despite commonly being physically and emotionally overburdened. A study published in the journal Global Social Work and coordinated by José Daniel Rueda Estrada, a member of the UOC's Faculty of Health Sciences, has analysed this hidden reality by investigating how caregivers themselves regard the resources available and their needs. Additionally, it examined their subjective health and the degree of overburdening to which they are exposed.

"We wanted to understand the situation faced by carers and their world: who they are, what support they have and what resources are available to them, and what idea they have of themselves", summarized Rueda. What they found was a group made up mostly of women who feel neglected by the authorities, which "waste resources whilst failing to adapt to the real needs", said Rueda. Furthermore, their perception is that "policies are aimed exclusively at people with disabilities, not at them. But who cares for the carers?"

The cuidadanía are essentially women

The study was based on a survey completed by close to 300 carers from the Castile-León region, a representative sample, according to the authors, whose characteristics can be regarded as comparable to the rest of Spain. In general, three-quarters are women, many of them elderly, with only an elementary school education and economically disadvantaged. And 55% of them acknowledge that they have not received support or aid for their work as carers, either from organizations or from their own families. This description corresponds to that of the idea of cuidadanía – a portmanteau of cuidar and ciudadanía (to give care and citizenry) – coined by philosopher Victoria Camps, which is, according to Rueda, "that social stratum, fundamentally made up of women, whose work consists of providing care and doing so for free, and whose role receives scant recognition".

This caregiving gives rise to what is known as an "opportunity cost", a loss of opportunities that comes from being unable to do other things whilst providing care, and that may have a negative impact upon their personal life or health. In the study, 53% of carers acknowledged feeling affected by their care duties in many different ways, be these with regard to work, education, leisure, or family and personal relations. Paradoxically, their perceived health is quite good, and barely 21% display any kind of overburdening when measured using a standard tool like the Zarit scale.

This latter point is "very striking", according to Rueda, "and contradicts some studies that do find greater levels of overburdening. This stratum of the population probably holds principles closely associated with sacrifice and forbearance, something that they have acquired over the course of their personal experiences and lives. They regard resignation as a positive value in itself and do not see forbearance as such."

Resources and real needs

The study also asked for an assessment of the services they received. Although only 20% regard them as directly "bad", the vast majority view the measures provided by the authorities as basically "ineffective". Not because the solutions offered are insignificant, but rather because they are based on stereotypes that do not reflect the real world. When they are asked about the benefits they really need, what they call for most is home care, which provides them with a break and which could indicate the real "burden" these people are putting up with. "Less empowerment and more unburdening, that's what they're demanding," Rueda noted.

"The public administrations need to understand that it's not just about increasing resources and making do with that," explained the UOC faculty member, "but that it's also important to manage them well. They need to reach those who need them and in the form in which they need them, and not based on general protocols." Oddly, even though rural areas tend to have fewer services, the study detected barely any demand for specific support in these areas. "Villages probably have a neighbours' support network, which compensates for the worse coverage," he argued.

In fact, "nobody's ever weighed up the true value of caregiving in GDP terms, despite the fact that we're living in a society in which everything's been commodified," bemoaned Rueda. And the response "can't come solely from the family sphere or the third sector. The public sector must, once and for all, take on board that it has an obligation to guarantee equality for everyone, and this includes both people with disabilities and those who care for them, who are completely overlooked," he concluded.

This research fosters Sustainable Development Goals (SDG) 3, Health and Well-being, and 10, Reduced Inequalities.

Reference article:

Álamo-Martín, M. T. del; Rueda-Estrada, J. D. (2022). El cuidado y sus protagonistas. Diagnóstico de una realidad oculta. Trabajo Social Global-Global Social Work, 12, 1-25. https://doi.org/10.30827/tsg-gsw.v12.23447

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