“Encontros Saúde & Dor” Bringing Pain Education to Low-Income Communities in Brazil

Approximately 11.25 million Brazilians live in low-income communities or “favelas.” In my home town of Jundiaí, near São Paulo, there are no less than 14 of these low-income communities, the largest of which houses approximately 15 000 families. Some low-income communities, such as Rocinha in Rio de Janeiro, are home to up to 180 000 people.

At my clinic in Jundiaí, I see a lot of people with chronic pain who live in these communities. Most of these people tell me that they have never been to school, and if they had, often they were not able to finish it. They often have a limited understanding of  basic health, let alone the biology of pain. Many have previously been given information from health professionals which is inaccurate. So last year I thought – what if all these people with chronic pain could access some of the information that I had access to as a physiotherapist, for example, that which is here on bodyinmind? What if they could avoid some of the nocebos that are so commonly provided in our health system?

After having that idea and drawing on the easy language of the Explain Pain book, I started an outreach program to bring pain education to the . I gathered a local group of therapists and doctors and started working on a “What Causes Pain” education program. My intention was to, like others have done, explain these principles to patients with chronic pain and hopefully improve their pain and quality of life.

People in both high- and low-income communities are at-risk of entering a vicious cycle of chronic pain. As we know, chronic musculoskeletal pain is a multi-dimensional problem that can lead to other substantial health conditions, for example, poor nutritional habits, smoking, self-medication, stressful routines, and so on.

Our first meeting was in February 2016 at Senac University, São Paulo. At that point, what we really wanted to know was whether we could implement a pain education program to help these low-income communities. Of course, this was not a scientific study. We didn’t have institutional support or a governmental backup. However, we agreed to move forward anyway.

First, and with a lot of support from community members, we started making some home visits. We used the visits to encourage people to gather wherever they could manage (family homes, public schools, public centres) in order to listen to our What Causes Pain education classes. We also received help from a local anesthesiologist, who organised a free clinic day where we could discuss our cause with other health professionals.

Admittedly, it took a while for people to understand that we were not speaking on behalf any governmental candidate or religion, and that we did not expect donations as a result. In addition, we also had to explain that we were neither proposing a therapy nor trying to sell any cure.

Since starting the program in February we have been having monthly education classes with residents in low-income communities. We called the classes “Encontros Saúde & Dor” which means “Health & Pain Meetings.” Our aim was to compel people to change their mind about what pain is. We hoped this would have benefits by reducing reliance on painkillers, improving the ability to self-manage and making people aware of harmful, inaccurate medical information. We found that the pain education classes evolved over time. We always used common language and encouraged people to understand pain as a natural symptom.

jundiai-community

As far as these education classes were concerned, there was no need for a formal medical consultation. With the limited time we had, we emphasised the importance and benefits of relaxation techniques. We discussed how these techniques might reduce the hypersensitivity of the central nervous system. For those patients who were sedentary, we explained how exercise can reactivate endogenous analgesic responses, and they seemed much more motivated. Even though we faced many reluctant professionals, who insisted on telling us that explaining pain to poor and illiterate communities was nonsense, we stuck to our mission. From February to October 2016 our unfunded pain education classes reached around 1509 people.

Testimonials so far have been very positive. Perhaps down the track our outreach work will help people be less reliant on medicine and on false promises of “miracle cures”. Moreover, we also hope that the meaning of pain could one day be detached from its negative commercial status, that is, that it always indicates something harmful that needs to be fixed by an “expert.”

While the success of Encontros Saúde & Dor has been heartening, we now face another big challenge: can we change the minds of the doctors, politicians, and companies on whom low-income communities appear to rely so much for their health information? Perhaps that is the ultimate challenge: to educate the educated.

About Rafael Turqueto Duarte

rafael-turquetoRafael Turqueto Duarte is a clinical physiotherapist who trained at São Carlos Federal University.  He has always been interested in improving the health of communities and he is especially interested in educating his patients about how pain works. Since 2014 he has been working at the  Instituto Alívio da Dor, developing a outreach program for patients living in low-income communities in his home town of Jundiaí, Brazil. To date, Rafael’s outreach work has been completely unfunded.

Associate Editor:  Adrian Traeger; Commissioning Editor: Neil O’Connell

Comments

  1. Amabile Dario says

    Great effort Rafael. It is great to hear about this amazing project in Brazil.
    Hopefully, one day, your project will be funded so you will be able to expand it to other communities in need. Boa sorte!

  2. Excellent work Rafael. We are just stepping into this in British Columbia, Canada. About 9 years ago David and Lorimer graciously encouraged my writing of a more conversational adaptation of my take on some of the ideas within Explain Pain. This has been used by many Canadian pain clinics (in French and English) along-side Explain Pain. In BC, with the support of a non-profit called Pain BC (you might check out their Live Plan Be portal for people in pain), we have now started a pilot of combining this knowledge with a gentle walking and movement class in three remote locations on Vancouver Island. To be clear – the movement classes are considered education as well – we believe that changing ease of movement is a powerful way change our understanding of pain, especially when combined with other forms of knowledge acquisition – such as the usual Explain Pain education. Most living in these areas are low income, and one community is a First Nations village – my guess is that you have modified the content and manner of education for unique cultural requirements.
    We have started with a 6 week, once each week, one hour movement and education class. We have the good fortune to have one local PT who has boundless energy for this, and has been able to enlist s few local MDs to learn the key messages and language of explain pain. And there are a few movement practitioners in the area who are helping guide the people in the movement classes.
    Our hope is to refine this, and create a ‘package’ that could be used in other Canadian rural and remote areas.
    All this to state two things – it’s always nice to know we are not alone in efforts to bring this knowledge to people who would otherwise have no idea they can suffer less and live with more ease, and if you ever make it to British Columbia, there are many who would love to share ideas with you.

    Rafael Turqueto Reply:

    “We have started with a 6 week, once each week, one hour movement and education class. We have the good fortune to have one local PT who has boundless energy for this, and has been able to enlist s few local MDs to learn the key messages and language of explain pain. And there are a few movement practitioners in the area who are helping guide the people in the movement classes.”
    – I´ve tried to approach the Public Health System here in Jundiaí, to implement a program that involved this idea too, with a physical educator to coordinate the movement part, for there is already a program that makes the family visits here (Family Health Program it is called – PSF). But it was not very accepted, for the political aspect so far.

    “it’s always nice to know we are not alone in efforts to bring this knowledge to people who would otherwise have no idea they can suffer less and live with more ease”

    Not at all! Moseley keep encouraging me too, and maybe that´s one of the reasons that we find solutions, because the problems are very similar.

    “if you ever make it to British Columbia, there are many who would love to share ideas with you.”

    ahaha, I´ll remember that! Thank you for the support and congratulations for your work too!

  3. André Roberti says

    A smart and empowering proposal. Congratulations Rafael! Keep doing this wonderful project.

    Rafael Turqueto Reply:

    Thank you Andre!

  4. Did the participants find that their pain reduced? If so, by how much and over what time frame?

    Thanks.

    Rafael Turqueto Reply:

    We couldn´t follow the responses of a group yet. Our intention is to return to the first community (São Camilo in Jundiaí) at February 2017.

    Some people relates to fell better after going to a meeting, and search for us again, that was one of the reasons to take people to the botanic garden of the city (http://www.iador.com.br/encontro-saude-dor-agosto-2016/).

    But we are still validating a good questionnaire and a way to make the follow up to this situation.

    EG Reply:

    Please let us know when you have that data. Such a neglected cohort is going to be very appreciative of your interest, time and energy. Taking these people on outings is a really nice thing to do, but the pleasure of that experience and the socialization are going to be massively confounding factors.

    My experience is that clients with low intelligence have almost no capacity to integrate pain education material. But for those who can integrate it, the effect is lessened when interaction effects are isolated.

  5. Fantastic work well done! Would love to hear more details about how you are teaching pain – here in South Africa we face very similar challenges!

    Rafael Turqueto Reply:

    Hello Romy, I belive every place face the same problem in your cultural and particular way. For that´s one of the reasons why chronic pain continues to be an epidemic problem, so difficult to approach even when we have a experienced team working to treat patients.

    The first aspect was to adapt a material with images targeting the problems of that particular group of people we were getting in contact. So the material changes a little every time we go to a community. It means that to make a Meeting we have a month or two to work on the organization. That´s where it enters the local development agents to help us – it´s envolves at least 5 to 10 people to gather as much local habitants as possible.
    Instead of giving classes we make round discussions, and maybe that´s the principal way to access the complains, instead of “teaching”, we make a conversation. And that give us time to understand and make a direction to the major doubts.
    Unfortunately we can´t use the Explain Pain Book or the Retrainpain material freely, we haven´t all that time and for the adaptations it needs for every different place, but these materials help us a lot to transform the language.
    In resume this is the organization, more or less.
    A lot of team work, and all effort to find good and resilient health professional to keep the scientific updating and translating it to this cultural and social aspects. We try to bring not only physical therapists, but doctors (that´s the best part, old doctors without the white coat, bringing information and taking out the nocebo so much spread by the actual system – it´s exciting to see, this month we are trying to take a neurosurgeon! And to understand the complains of pain out of the clinical aspect, makes a real diference when we come back to our treatment sections, we are now trying to measure that too).
    Does that information helped?
    I can share all the material we got here, just make a personal contact if you want it. But I belive you have much more things in english than we have here in portughese..The thing is gather a team and take the time to enter on the communities. This will take some effort.

  6. Thiago Jambo A. Lopes says

    Great Job Rafael, simply amazing! I have no doubt you will suceed in your project. It must be amazing to help people that really need help! Hope one day we can work together ams spread this idea!! Parabéns meu amigo, linda iniciativa! Desejo muito mais sucesso!!

    Rafael Turqueto Reply:

    Thanks Thiago! To spread the idea is the hole idea here! You are welcome to join anytime. This is only a part of the biopsichosocial model we are trying to implement.
    Forte abraço

  7. Leandro Cezarino says

    This is surely a great job. I have been following Rafael on this journey and all this effort comes from his soul.
    Pain education to low-income communities and Knowledge translation to the educated.
    Well done Turqueto

    Rafael Turqueto Reply:

    Thanks Leandro! For all the support!

  8. Good on you Rafael! Keep up your great work. Very inspiring.

    Rafael Turqueto Reply:

    Thank you John and Jacob!
    it’s a great way of learning about the social aspects of the pain. To respect people complains when we take our eyes out of our clinical day job!

  9. John Barbis says

    Great job. Inspiring.