When adversity is a source of life

Antonio is one of the members of the group and is dressed up as a bag to de-stigmatize and make others see that this bag can help them live.
Antonio is one of the members of the group and is dressed up as a bag to de-stigmatize and make others see that this bag can help them live.
Culture
(21/11/2016)

Two years ago, Salvador García, professor of Social Psychology of the University of Barcelona and doctor in Medicine at UAB, created -together with digestive system surgeon Dr. Eloy Espín, and stomatherapist nurse Inma Davín- La bossa i la vida, a group of support for patients who have undergone or have to undergo an ostomy, the surgery that moves the digestive tract end to the abdomen. “I came up with this because apart from being a doctor and a psychologist, I have a pouch, and for some years, I coordinated support groups for psycho-social readjustment after heart attack. Therefore this idea couldnʼt be more appropriate” he says.

Antonio is one of the members of the group and is dressed up as a bag to de-stigmatize and make others see that this bag can help them live.
Antonio is one of the members of the group and is dressed up as a bag to de-stigmatize and make others see that this bag can help them live.
Culture
21/11/2016

Two years ago, Salvador García, professor of Social Psychology of the University of Barcelona and doctor in Medicine at UAB, created -together with digestive system surgeon Dr. Eloy Espín, and stomatherapist nurse Inma Davín- La bossa i la vida, a group of support for patients who have undergone or have to undergo an ostomy, the surgery that moves the digestive tract end to the abdomen. “I came up with this because apart from being a doctor and a psychologist, I have a pouch, and for some years, I coordinated support groups for psycho-social readjustment after heart attack. Therefore this idea couldnʼt be more appropriate” he says.

Professor Salvador Garcia is specialized in people's training and development, organization psychology and organized change and social innovation. He is a supporter of group psychology and collective intelligence: “I like groups, the personal development psychology of a group is great, it benefits the patient equally or even more than individual goals” because “the effect increases in a group, they discover strategies and support each other”. Moreover, “the best way to normalize and turn a stigmatized situation into a more natural one is by talking about it. It is a good thing to talk about it and normalize any adverse situation as a thing that could happen to us. It is like coming out of the closet”, he says.

Although there are Stomatherapy Nurse rooms in several hospitals, which take care of all the technical aspects of the pouch, all of them are overwhelmed by work. What La bossa i la vida does is complementary to the task of these nurses. Our task is enriching because the group has already a positive effect and it tackles many psychological aspects that a nurse could not face in the same way.

A pouch that helps you live

This group, born two years ago, is especially effective for people who have to carry a pouch and donʼt know about it or about its implications. The group is free and open. Anyone can go on Thursdays, from 18 to 20h, in the 11th floor of the Vall dʼHebron University Hospital. We started being a group of 8 people and now we are around 25. If the group continues growing like this, it will be divided into two.

“At first, when they tell you you have to carry a pouch, the impact is very big because you donʼt know a lot about it and there is a lot of stigma. At the beginning you think your life is over. I thought people would feel sympathy for me, that I would not be compatible with the life I like to have: traveling, teaching, playing sport, etc. The situations you imagine are worse than reality” he says. However, in some cases, some people refuse to carry the pouch so they choose not to be operated on, accepting the consequences of this decision, which can be fecal incontinence or putting their lives at risk, in cancer processes.

“Some years ago all this was worse, patients who were operated on had to wear diapers and it was all more dramatic, but now there is good stuff, they stick a disc on your skin, and it goes with an hermetic and hygienic bag which allows you to have a normal life”, says Salvador. There are different kinds of bags. Some have to be changed once a day. In addition, it depends on the intestinal transit; there are some bags that have a stopper. The bowels have some irrigations and the patient can spend one or two days without having to wear the pouch.

The slogan that defines this group is “Less attention to the bag and more full attention to life”. Behind this, there is a philosophy in the line of full conscience or “awaken presence”, like García likes to say. The objective is that members of the group understand that the pouch allows them to live, and they should be aware of all the good things they have in their lives. “It is about not thinking of ʻthe misfortune I am going throughʼ and turn this situation into a ʻsign of life saying that life is great and I should live it to the fullestʼ. All the impacts of this illness are a chance to spread the conscience and re-list values. In life, we learn through bad situations. It is sad but real. The capacity you have to realize how things are and take them into account gets bigger when you face some adversities, not when all goes away”, he says.

They also created a support group for young patients: Bag is life. García says that one of the patients said that thanks to this pouch she had met great guys. “How cute is she? Of course, all sillies are self-excluded. In fact, the pouch is a love opportunity. A real couple grows together in difficult situations. It is lovely to see the care and support that partners give to the patient”.

Spaces for human connection are necessary

“The group is welcoming and works well. They talk about things they wouldn't share with other people, and that brings people closer. We are in the same situation. One thing is to ask what happens if you take the pouch out, and another quite different is to talk about what will happen now with sexual relations. “When there are new people in the group, which gets renewed, and they see the veterans that are perfectly ok with it, they lose lots of fears instantly. Nowadays our face-to-face meeting system is not everywhere, and this is important because it humanizes a lot”, says Salvador García.

There is a facilitator in the group, Marga Parés, who has lots of human qualities and medical training. She works on thanking. “Thanks to life, thanks to a life in this country that has access to medicine, surgery, and desirable public health. I would be broke or dead if this had happened to me in the United States -he says- but the quality of our public health is first level in the world and sometimes we do not see it”.

Health staff should develop their psychological sensitivity

Salvador Garcia says that “there is a lot of work to be done regarding the training of health staff, especially doctors and surgeons. In the bachelor degree of Medicine they don't work on psychological or emotional aspects, and I am not only referring to managing the patient's feelings, but also the doctors' as people. The training of health staff in their personal development field is a challenge. Now there are doctors that donʼt look at the patient's face, they just look at the injury or the screen. They should know how to speak when giving the information out and support the patient. There should be an effort of connection with the patient, which starts by having a connection with themselves” ends García.