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From hands clean to hands-on: Coronavirus and ideas to support older people in São Paulo

Marilia Duque E S3 April 2020

Isolated, not alone

In Brazil, 15.3% of people aged 60 years and over live alone. When I conducted my 16-month ethnography among older people in Sao Paulo, I came across many of them. Most are extremely active and engaged in social activities and in the WhatsApp groups I participated. They have many friends, enjoy their freedom and independence. However, there are also a few who are living in a kind of semi-quarantine. The reasons for this are many. Some are widows. Some chose not to have children, some had children, but the children moved abroad. Some self-isolated after retirement. Their social interactions are sometimes restricted to speaking to shop assistants and people at the market, the drugstore, and the bank. There are many nuances among people in those two groups, and I was worried about both when social distancing was imposed by the coronavirus outbreak. How could I help them? The answer came from my fieldsite, where I observed how people like Marta and Bete below, were using WhatsApp to create networks of care.

Marta, aged 54, told me she does volunteering work. Every morning she sends a “good morning” messages to three older ladies who she knows are leaving alone. The WhatsApp messages work as a daily check to ensure the three are doing alright, as well as being a demonstration of affection and bringing joy to them.

Bete, aged 66, experiences a similar routine, but with her daughter, who lives in Spain. Everyday the daughter waits for a message from her mother to arrive before 10 am, when the mother writes to confirm that she slept well and that she is fine. The same procedure is repeated at night. If Bete doesn’t answer the message, her daughter has some friends in Brazil that she can count on who can support her mother if necessary. In addition to this, Bete, who had an aneurysm two years ago, also receives occasional calls from her health insurance provider. During the call, she updates the doctors about the state of her health and receives advice. Despite living alone in São Paulo, far from her daughter and grandson, Bete feels safe and assisted.

I learned a few things from these simple, but successful models of care:

  • They take place on a platform people are already used to (in the Brazilians’ case, this means WhatsApp).
  • They are based on care providers who shift from a reactive to a proactive role (including family, friends, or institutions)
  • They create a daily routine of care
  • They show even simple text messages can make a difference.

Based on that, I created an awareness campaign which replicates those models and provides support to older people living alone during the coronavirus crisis. The campaign is called “Angels on WhatsApp” because “angel” was what some of my informants used to call me when I helped them solve a problem.

Prototyping Wings

The campaign was launched on the 14th of March on my social media channels, but my focus was my WhatsApp groups and people I knew working on the topics of ageing or health. The campaign consisted of an image and a text message with instructions on how to become an Angel for older people living alone during the quarantine.

There is a guardian angel on my WhatsApp. Adopt an older person who lives alone during the coronavirus crisis. All you have to do is to be available on WhatsApp. Acess: http://www.saudeeenvelhecimento.com.br

The message describing the campaign that was sent out to my contacts can be read below. Because the message was translated from Brazilian Portuguese, some of the content of the message will relate to Brazilian healthcare infrastructure.

AN ANGEL ON WHATSAPP, BECAUSE SOLIDARITY IS ALSO CONTAGIOUS 😇😇😇

Social distancing can be a great preventive measure against the Coronavirus, especially for the population over 70, which has the highest mortality rate. The feelings of loneliness, abandonment and helplessness that it can bring are an immediately visible downside. But that does not mean that older people have to go through this alone.

The idea of the initiative is simple: you can become a guardian angel on WhatsApp 😇 and help support older people who live alone. The idea can be applied anywhere in the world, but it is important to do as the virus would do, and start with the people you have contact with. So, forget your country, and forget your city. Think small: start with your WhatsApp contacts.

DO YOU KNOW OF AN OLDER PERSON WHO LIVES ALONE AND WHO IS ONE OF YOUR WHATSAPP CONTACTS? 👏👏👏👏👏👏👏 GREAT! NOW YOU CAN BE HIS OR HER GUARDIAN ANGEL:

👉 Text him/her in the morning and in the evening. Ask how he/she is, whether he/she slept well, whether he/she has eaten.
👉 Be available to chat.
👉 Be ready to guide him/her on how to seek medical advice. In Brazil, the Ministry of Health developed an app with a questionnaire for screening patients based on symptoms and a map of treatment centres using geolocation. Search for ‘CORONAVIRUS SUS’ in your app store.
👉 You can also keep him/her informed by sending news from reliable sources. The Ministry of Health has prepared a page on the Coronavirus that can be accessed here: https://www.saude.gov.br/saude-de-a-z/coronavirus. The CORONAVÍRUS SUS app also offers reliable news and tips.

👀 PLEASE NOTE: the volunteer cannot make a diagnosis or give any medical recommendations. The volunteer is a bridge for connect older people to reliable information and professional medical assistance.

WHY IS THIS REALLY IMPORTANT? 💪💪💪💪💪

  1. You can help support older people and make them feel less lonely during their period of self-isolation due to the Coronavirus.
    2. Two heads are better than one: you can both discuss the news about Coronavirus and double-check their reliability and trustworthiness before sending them on to friends.
    3. The SUS application is really good, but one of the biggest difficulties older people (mainly over 70) have is downloading and installing new applications. You can be a bridge between an older person and the information and guidance contained in the SUS application.

WHERE DID THE INSPIRATION FOR THIS INITIATIVE COME FROM? 👽
My name is Marília, and this idea is based on my PhD research. For 16 months, I observed the use of smartphones among older people in Sao Paulo. If there is an app that they universally use, it is WhatsApp, including using the app to build networks of care and solidarity. Want to know more? Access: http://saudeeenvelhecimento.com.br/anjo/ (in Portuguese)

The message above went viral, and people I knew started asking me for older people’s WhatsApp numbers. Some of them decided to focus on their neighbours, reproducing the notes that were spreading all over the country[1]. Then, the campaign reached the media, and I ended up getting 150 emails from people interested in becoming an angel. That was how my problems started.

“Hello, neighbours! If you are in a risk group, I am available
to help by going to the drug store or market. You can count on me.”

From Heaven to Hell

On the one hand, I had 150 people wanting to volunteer. On the other, I had hundreds of older people I worked with and some I knew would be alone during the quarantine. So what did I do? Nothing. Firstly, I couldn’t breach the terms of confidentiality of my research. Secondly, because older people are a common target for scammers, I could only intervene directly when three older people wrote to me asking for an angel, when I managed to get close friends of mine who I knew were trustworthy, to take care of them. And what about the rest? I couldn’t take the risk of having a swindler mistaken for an angel, so I started looking for existing platforms that could facilitate this match between people. I found two.

The first one is the startup “Mais Vivida”, which connects young people who get paid to help older people with their shopping or computer skills, for example. Mais Vivida created a free service for the coronavirus crisis which puts volunteers and older people in touch for free, but their service has a problem. To ask for help, older people need to fill in a six step form on Google Forms. I tried to use Google Forms to create a survey for my research participants before. It didn’t work well, especially for those older than 75.

Screenshot from Google Forms used by Mais Vivida.

I continued searching and I found “Os vizinhos do Bem” (The Good Neighbours), a platform developed for the quarantine which matches those who can offer help to those who need help. In this case, the first question the website asks is why you are seeking help and there, the user has the option to inform the service that he or she is 60 or older. The questionnaire is simpler, with only 11 fields, but it could be still a challenge to complete for older people.

For now, I keep giving guidance to volunteers to check their WhatsApp contacts, to ask friends, and to pay attention to their neighbours and I am also encouraging them to engage with one of those platforms. In the perfect scenario, older people wouldn’t have to leave WhatsApp or install any other app to inform others that they want help. After teaching three semesters on a WhatsApp course, it was clear the platform is where they become connected, where they feel comfortable and confident. So I am still waiting to find an alternative which considers this ‘smartness from below’, but this won’t stop angels being angels. I keep receiving feedback from people and it confirms what one woman aged 66 once told me: “In volunteering, you think you are giving something, but you are the one who is always winning.”

Below, you can read the testimonials of some of the Angels who have taken part in the initiatives, where they reflect on their positive experience.

“When I discovered that an action as simple as sending messages, calling or video chatting with older people could make such a difference, I was overjoyed. I adopted three lovely “aunts” with whom I started to speak every day. Today, one got emotional and thanked me saying that before that, she only had her dog to talk to. Then I was the one who got emotional”. – E. S. Forbes

“At first, I thought that she did not need help, as she was very attentive and has children living in the same city. As the conversations went on, I came to that old truth – we all need it. We always learn that we can help others and that would fulfilment and calm the soul. We also learn that there is always something new to be learnt. Taking care of an “older lady”, even if virtually, also helped me to manage the absence of my own parents who are not here anymore. In the scariest moments, like the ones we are living in now, I think about them and what they would say to me. So now, I listen to my older lady. All of this also gave me that really made me want to help more, to send messages to those uncles we never speak to and to the neighbours in the building”.  -S. Prevideli

Woman, interrupted

Marilia Duque E S9 January 2020

The “Menopause Kit” developed by Rosana Galvão, who has faced a decade of hot flushes. It includes an elastic hair band, a hair clip, a hand fan, tissues and a bottle of water. Photo (CCBY) Rosana Galvão.

 

Three weeks ago, The Economist published an article[i] addressing all the symptoms menopausal women face, often unnecessarily. The article talks about some of the arguments in favour of the hormone replacement therapy (‘HRT’ hereafter), highlighting that misinformation about the treatment can often lead to its demonisation. In the author’s words, HRT constitutes a “cheap, alternative” treatment with significant “long-term benefits” for women entering menopause.

The article also discusses the two publications that are responsible for various turning points in terms of the reputation of HRT in the past decades. The first book to discuss the symptoms caused by the deficiency of oestrogen and as well as its potential use in alleviating these symptoms was “Feminine Forever” by Robert Wilson, published in 1966. The second turning point was the publication of the study known as the Women’s Health Initiative (WHI hereafter), published in 2002. This publication was the first to seriously emphasise the harms caused by HRT and has had a long-term effect on the reputation of the treatment, associating it with an increased risk of breast cancer. According to a 2006 BMS (British Menopause Society) article, after the WHI study came out, ‘most women’ stopped having HRT. The most recent turning point in terms of the perception of HRT is the launch of the book “Oestrogen Matters” (2018). The book’s co-author Avrum Bluming (an oncologist) reframes the findings of the original WHI study, arguing that the women recruited for it were already unhealthy or well beyond the ideal age for starting HRT. This publication, along with other recent findings, may be the key to redeeming the previously controversial treatment after all. This is great news for those entering menopause now or in the near future, but what about those to the women who went through it in the last 20 years?

The WHI study has undoubtedly had a long-lasting effect on the reputation of HRT all over the globe. This includes Brazil, where I conducted a 16-month ethnography with older people, among them women aged 50 to 72. When the findings of the WHI study were published back in 2002, the Brazilian journal Folha de São Paulo[ii] published an article where the Brazilian Ministry of Health proudly informed its readership that the Brazilian public health system (called ‘SUS’) was aware of the risks involved in recommending HRT, only having done it for very specific situations or cases (such as when women were suffering from osteoporosis) since 1995. At the time, the Women’s Health Coordinator in the Brazilian Ministry of Health was quoted as saying: “The risks are bigger than the benefits. Any serious person would recommend the therapy with precaution”. It is interesting to note that in Brazil, menopause as an issue had been included on the public health agenda since 1993, as part of Brazil’s Women’s Integral Health Assistance Programme (PAISM)[iii]. This marked a shift in the overall approach to women’s health, from an emphasis that was previously focused on maternity, to a more holistic approach that took into consideration all stages of a woman’s life and health. This can be seen a consequence of the ageing of the population in the country.

Nowadays, the official guidance published by the Brazilian Ministry of Health, summarised in a document called the ‘Handbook of Care for Women in Menopause’[iv], recommends a mix of physical and educational activities as well as eating a special diet as the main approach to managing the menopause. The material also contains healthcare professional facing information, addressing therapies including hormonal treatment (followed by a discussion of its side effects), acupuncture, phytotherapy (a type of herbal medicine) and anthroposophic medicine (a distinct special therapy system that has recognition in some countries).

The Ministry of Health issued handbook also encourages women to be informed about the risks of HRT so they can make a decision about the type of therapy they want to have. From the perspective of the research participants in my field site (a middle-class neighbourhood in São Paulo), I can say that this is very much a secondary problem. This is because there is first of all a lack of reliable information and support about menopause in the first place, and about what its effects on a woman’s quality of life may be. A quarter of the women I interviewed had gone through it with no information or support, and confessed they didn’t have much time to pay attention to the changes in their bodies because they were focused on work or family. At the time (10 to 20 years ago), many of them were taking care of their children and older parents. Moreover, menopause is a taboo even among women. Some women I spoke to are from a generation that didn’t talk about menstruation or menopause with their mothers or with their cousins or friends. They were alone. Some of them only realised during the interview that the time they stopped having their menstruation actually coincided with the time they started to experience depression, insomnia, weight gain, and a loss of libido. Decades later, I can see that the new generation of menopausal women have started talking more about the subject, but the level of professional support hasn’t improved very significantly, especially for those who rely entirely on the public health system. Take Maria’s case: aged 52, she has been having hot flushes for a whole year, but she can’t say if she is experiencing menopause or not, because she has got her period twice during this time and her doctor says her diagnosis is unclear. Without professional support to guide her at this time, she has started drinking blackberry tea, while she trying to manage the embarrassment and discomfort she faces when the hot flushes come in public. The tea was recommended by her friends, who are her primary source of information. Maria asks them for advice, but each one tends to suggest different things, since they experience menopause in different ways with distinct symptoms.

Menopause is also a class issue in Brazil. The meaning attributed to menopause and the treatments available differ from one social class to the other.  A study conducted in a low-income and religious community in the Northeastern region of the country[v] showed that in the community in question, menopause can be seen as an act of God, with God being the one helping them accept it with resilience. In that specific example, women are subjected to a set of stigmas related to loss of fertility, leading to situations where some are seen as ‘dry women’ or even ‘non women’, primarily from the perspective of men. In a peripheric urban area of Sao Paulo, another study[vi] shows women experiencing menopause as a totally unexpected event, almost as if it is something one has ‘caught’, and is not directly associated with ageing. These women tend to use basic public health clinics to manage their physical symptoms without having access to a specific programme or assistance for menopausal women. In their case, HRT is rarely recommended because of its cost and because there is a gap in local resources that means clinics are not able to manage patients in a more long-term way – HRT would involve having routine medical tests, for example. Another study conducted in an upper middle-class neighbourhood in Rio de Janeiro[vii] shows that here, the situation couldn’t be more different: menopause is swiftly ‘treated’ with HRT almost by default, because these women are in the prime of their lives and want to get on with things. This doesn’t mean this group of women considers menopause something problematic or unnatural. They just want their bodies to have the ability to carry them through the new experiences and projects they aspire to do during this period of their lives – and they can afford to pay for it.

A moral dilemma

When access to information and the cost of treatment are not an issue, having HRT still seems to raise a moral dilemma that goes beyond the choice between hormones or cancer. Having HRT can be seen as an act of vanity or an irresponsible decision on the part of women who simply can’t accept the fact they have aged, with HRT symbolising the selfish and dangerous choice to pursue youth. The moralising dimension to the consequences of that choice can be seen in the following paragraph, taken from another official document published by the Brazilian Ministry of Health, the ‘National Policy for Integral Attention to Women’s Health’[viii]:

The medicalisation of women’s bodies, with the use of hormones during menopause, finds a fertile field in the female imagination due to the false expectations it places, such as eternal youth and beauty. Medicalising women’s bodies, in the name of science and supposed well-being, has always been a practice of medicine, which will only change when women are aware of their rights, of preventive and therapeutic possibilities and of the implications of different medical practices over their bodies. Oestrogen abuse for menopausal symptoms causes serious health problems, and women should be properly informed so that they can decide whether or not to do hormone replacement therapy.

In my field site, the moralising discourse around HRT is expressed even among women who do decide to have the treatment. Even as they describe the way in which they suffer from menopausal symptoms and how HRT provides them with a better quality of life, there is still an attempt to justify their choice using expressions like “I only used the bare minimum”,I only had it for a bit”, or “I wish I had prepared for menopause better with more natural alternatives”, quickly adding that they are either trying to quit HRT or have already done so.  Claudia, aged 65, is one of them. She is convinced that women don’t have to go through all the suffering menopause can bring, and that HRT is an important ally in supressing symptoms, but she too feels the need to emphasise that she doesn’t take it anymore, even if later in the interview she says she is still under treatment.

In the same National Policy for Integral Attention to Women’s Health, menopause is addressed as a challenging experience for women, who are now having to deal with the loss of their ability to have children as well as the end of their youth. Combined, these factors would be enough to trigger a crisis in some women, as highlighted in the paragraph below:

 “There is a systematic discrimination in our society based on people’s chronological age. In the case of women, this discrimination is most evident and occurs not only in relation to the physical body – fuelled by the overvaluation of motherhood in relation to other capacities and the myth of eternal youth – as in other aspects of life. In a patriarchal society where youth and beauty are related to success, entering “middle age” can give many women the impression that “it is all over”.”

I have had the opportunity to listen to the stories of seven women over 50 who don’t have children. Three of them had experienced fertility problems (either them or their husbands) although the couple decided to keep having sex without any intervention. The fourth woman I spoke to was married, but the couple decided not to have a child. The other three women were single. Two of them said they didn’t have a partner they could feel committed to and could start a family with and the third just can’t imagine herself being a mother. All of these women are now thinking about the children they didn’t have, but that is just because, like any other person at this stage in their lives, they have begun to think about who is going to take care of them when they get older. There is no evidence among these women or among my own female research participants that they are experiencing the feeling that “it is all over”. On the contrary, they are living their lives to their fullest and many of them are discovering new passions and engaging with new projects. While it is true that they complained about their bodies, this is not because they miss their beauty or their youth – in fact, they usually complain about the disposition they used to have (and for some, this includes the disposition for sex).

When sex matters

Menopause isn’t only about the end of motherhood or the loss of beauty. For some women, sex is huge part of their identity, although that is not true of the majority of the cases in my field site. Most women I spoke to recognised the changes in libido that they experienced after menopause and accepted them. In some cases however, the loss of libido can represent a sort of loss of the self. That was the case with Carla, aged 70, who had HRT for five years before her doctor decided it was time to stop the treatment, leading to her spiraling into depression, noticing changes in her hair and skin and also in her libido. Carla defines herself as a person that is extremely connected to sex.

Do you know a person who is good in bed? That is who I am, and I am not talking about sleeping. I know what pleases me, I know how to please my partner, and I know how to make him please me”, she says.

As an example of an upper middle-class participant, Carla challenged her doctor’s authority. She researched alternative doctors and found one who she knew was in favour of recommending HRT. She then pursued all the necessary tests in order to be prescribed the treatment again, and found that this enabled her to go back to who she was.

I am not just a statistic. I have the necessary tests every three months, and I have decided to take the risks”.

Another participant, Gisele (aged 61) like Carla really enjoyed sex, but her journey took her in the opposite direction. Her doctor didn’t recommend that she have HRT, given her family history of breast cancer and because she was a former smoker. “If there is even a 0.5% chance of getting breast cancer, I won’t take the risk”, she says. Since then, and despite 11 years of hot flushes, Gisele has tried to reinvent herself:

“I am glad I enjoyed sex so much, I am glad that I never held back. It was good because at least I have something to remember today. That person – me –  I really existed. Because it’s so hard today without any libido, zero. Where did all that desire go? Did I really live all that? Was it me? It was me, right? It’s very hard to recognise myself. So I’m in much need of psychotherapy, because it’s all so strange to me. How can I start to think about myself without sex?”

The original Economist article sums up the harm that can be caused to women’s bodies very well, noting that menopause can harm “brains, hearts and immune systems. It is associated with a higher risk of osteoporosis and fragility fractures, increased abdominal fat, and a heightened risk of contracting diabetes”. It is here that I would like to highlight the ways in which menopause can also harm women’s self, going well beyond the issues of motherhood, beauty, youth or diseases. In some cases, having or keeping a disposition for sex really matters to women, an aspect that I thought was missing in the original article. As the author says, “the symptoms of menopause can include hot flushes, depression, aches and pains, insomnia, anxiety and transient memory loss”. Indeed, but what about the loss of libido? In the study conducted in a peripheric urban area of Sao Paulo I mentioned before, women don’t think something like the loss of libido justifies the time and effort they would have to invest in scheduling a medical consultation and the researchers argue that even if they do so, they wouldn’t find a professional willing to listen to their sexual complaints. Even among my informants, women face the loss of libido with resilience, as if it was something they would expect at this age, or as if it was something they are not supposed to resist. Beyond the benefits for the symptoms of menopause and related chronic diseases, maybe that is something HRT could also challenge: the lack of attention paid to desire and sex in latter years of life. Not because women ‘need’ it, but because some of them want it.

 

 

 

[i] The Economist (2019, December 12). Managing Menopause: Million of women are missing out on hormone replacement therapy. https://www.economist.com/international/2019/12/12/millions-of-women-are-missing-out-on-hormone-replacement-therapy

[ii] Brasília Branch Office. (2002, July 12). F. de São Paulo.

https://www1.folha.uol.com.br/fsp/cotidian/ff1207200215.htm

[iii] Lopes, Cristina Garcia (2007). Integralidade na Saúde da Mulher – A questão do Climatério. Fiocruz. Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro.

[iv] Handbook on Care of Woman in Menopause
Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Manual de Atenção à Mulher no Climatério/Menopausa / Ministério da Saúde, Secretaria de Atenção à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília : Editora do Ministério da Saúde, 2008. http://bvsms.saude.gov.br/bvs/publicacoes/manual_atencao_mulher_climaterio.pdf

[v] Costa, Gabriela Maria C, Gualda, Dulce Maria Rosa. 2008. Menopause Knowledge And Experience For A Group Of Women. Rev Esc Enferm USP, 42(1), 81-9.

[vi] Trench, Belkis, & Rosa, Tereza Etsuko da Costa. (2008). Menopausa, hormônios, envelhecimento: discursos de mulheres que vivem em um bairro na periferia da cidade de São Paulo, estado de São Paulo, Brasil. Revista Brasileira de Saúde Materno Infantil8(2), 207-216. https://dx.doi.org/10.1590/S1519-38292008000200008

[vii] Pereira, Cláudia; Penalva, Germano. 2012. “Mulher-madonna” e outras mulheres: um estudo antropológico sobre a juventude aos 50 anos. IN: Corpo, Envelhecimento e Felicidade. Org. Mirian Goldenber. Rio de Janeiro: Civilização Brasileira.

[viii] National Policy for Integral Attention to Women’s Health
MS (Ministério da Saúde/ Secretaria de Atenção à Saúde/ Departamento de Ações Programáticas Estratégicas), 2004. Política Nacional de Atenção Integral à Saúde da Mulher – Princípios e Diretrizes. Brasília: Ministério da Saúde.
http://bvsms.saude.gov.br/bvs/publicacoes/politica_nac_atencao_mulher.pdf