Who Takes Care of the Caretakers?

A gender approach to address caretakers’ needs.

By Juliana Saldarriaga, Innovation Manager at A Piece of Pie Colombia

Sara is a 50-year old Colombian woman and we are interviewing her to learn more about the current situation of lymphoma patients in the country. In this case, the patient is Sara’s husband and Sara is his sole caretaker. We can tell she is exhausted, which makes our time with her even more valuable, but nothing is more valuable than the moment when, wondering out loud, she says, “I will take care of my husband because I love him, but who takes care of the caretakers?”

She is referring to her daily routine and responsibilities, including the fact that she sleeps three to four hours at night because, besides looking after her husband, she is also in charge of running the family business and dropping off and picking up the kids from school. She is referring to the many hours she has spent in hospital waiting rooms, sometimes sitting on the floor because the chairs are full (“they’re too uncomfortable anyway,” she says). She is referring to the fact that relatives and friends will always ask her about her husband but never about her and whether she needs to blow off steam. With this simple question, Sara is, above all, referring to the reality of many women in Colombia and Latin America that have no choice but to become the primary caretakers of their chronically ill relatives.

Are caretakers usually women?
Yes, and this no coincidence. For decades, feminist literature has suggested individuals are conditioned by gender roles (1). These explicit and implicit roles instruct men and women to think and act differently and have been normalized to the point that we assign them a natural or biological origin. Women have been assigned the role of caretakers: even if we have fulltime jobs that are just as demanding as those of our male relatives, we take care of children, elders and individuals with chronic or disabling conditions, providing both physical and emotional support. This is starting to change as younger generations of men become more aware and proactive to lighten women’s burden. However, in cultures where traditional values are predominant, the assumption that women are biologically programmed to become caretakers is still largely unquestioned — and it’s an assumption that is used as excuse to burden these women with the handful of physical and emotional tasks that caregiving implies.

Our fieldwork certainly confirms this. Interviewing caretakers in Latin American countries usually means interviewing wives, daughters, mothers or sisters. What do they all have in common, besides being women? The fact that they’re impressively fast learners. Shortly after their relatives become ill, these women become fully familiarized with the medical jargon as well as the do’s and don’ts for a specific illness. They learn how to react in case of emergency and how to approach healthcare professionals and the hospitals’ staff without being patronized.

“I learned the names of all the medicines my brother was taking, the exact doses, the time intervals and how to interpret his symptoms. I became an expert in his condition.” ~Sister caretaker

These women do this without having previous knowledge or experience with healthcare, and some consider the practical know how they acquire is comparable to that of healthcare professionals (Sara jokingly tells us us she feels like a “lymphoma dictionary” because she has learned about the 27 types of this cancer). This empowers them and strengthens their bond with the patient, as can be seen in the Instagram account of a mother who takes care of her six-year old daughter, diagnosed with a rare condition known as spinal muscular atrophy or SMA (2). She explains no nurse or healthcare professional, no matter how rigorously trained in SMA, will ever understand her daughter the way she does (“We understand each other, we have our routine,” she says in one of her Instagram Stories). Empowered caretakers will also filter the information patients receive in other to keep their hopes up. Daughters that become caretakers say it’s as if the relationship is inverted and they become the parents. These women become the mediators between healthcare professionals and patients, considering patients can sometimes be stubborn, feel embarrassed of their symptoms or express denial.

“It’s been two years and I still haven’t given her much information about her condition. She says it’s an infection, even when the doctor said it was cancer she insisted it was an infection, so we talk about it like it’s an infection.”
~Daughter caretaker.

It’s impressive how women faced with such a challenge are resilient and empowered. However, we must not forget most of them are performing their duties as caretakers while trying to carry on with their lives and responsibilities. At times optimistic and resourceful (“I’m switching the store we have to online store, that way I can work while I am with him,” Sara says), there are moments when they feel overwhelmed and completely burned out. They can suffer from anxiety, depression and fatigue and they simply do not have the time to address this. Sara tells us she once met another caretaker who developed a facial paralysis due to stress: “Horrible, yes,” she says, “but more horrible because she was so busy she didn’t have the time to stop to worry about it.”

What happens in COVID-19?
The role of women as caretakers has become more dramatic during COVID-19 and quarantine. First, their routines became more intense because chronic patients are a high risk group, so their dependence on their caretakers is enhanced. Second, in countries with struggling healthcare systems, non-COVID medical services are not a priority right now, something caretakers have started to witness when they try to request medical treatments or appointments.

“My tricks to accelerate the paperwork haven’t worked this time. I cannot go to the hospital and pressure the staff the way I used to. Things don’t move as quickly over the phone.” ~Mother caretaker.

But let’s talk about the bigger picture here. As we’ve mentioned, gender roles dictate how men and women must act and what they must do, and this implies each is better suited for specific types of jobs. As “natural” caretakers, women are supposedly better suited for jobs that require caring for others, so we are more likely find female babysitters, preschool teachers, domestic workers and nurses. It is no coincidence that, in Latin America, 9 in 10 infirmary professionals are women and that women make up 70% of the sanitary services sector (3). This means women are more exposed to the pandemic; not only are they looking after COVID-19 patients, they also are in charge of washing medical equipment and cleaning hospital facilities.

What’s interesting here is decision-makers and leaders are not implementing a gender approach to understand the impact of COVID-19. Some of them are actually heading in the opposite direction and emphasizing gender roles to increase the burden of caretaking on women. The president of Mexico Andrés López Obrador has suggested several times that women in every household will be the primary caretakers of infected patients rather than the healthcare system: “Although women want to change their role, the tradition in Mexico has always been that the daughter takes care of the father. We men are more unattached, so daughters must be responsible for fathers and mothers.” (4) By enforcing the belief that women have a natural calling for caretaking, leaders are completely disregarding the physical and emotional toll caretaking implies for women and will never take it into account when designing strategies to handle COVID-19.

What to make of all this?
Identifying the needs of caretakers in healthcare projects is just as important as identifying those of patients, but this is nothing new. However, doing so with a gender approach is, and this is what we’re doing at A Piece of Pie. We know we cannot take the fact that most caretakers are women for granted. We know we cannot interpret this as the result of some natural or biological calling, but rather as the result of normalized gender roles that pressure women to become sole caretakers of chronic patients while they continue with their lives and responsibilities. Instead, we make sure we recognize the caretakers’ expertise and implement participatory design methods not to solve their problems for them, but to channel their creativity and their expectations to create meaningful co-created solutions.

This is what the gender perspective is all about: to perceive women not as passive beings trapped in an unfair yet inalterable system, but as resilient, proactive agents that need us as their allies rather than their saviors.

To learn more about the ways in which A Piece of Pie is implementing a gender approach not just in healthcare, but in a wide array of contexts, don’t hesitate to contact us at info@piecepie.com!

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