Table 4.

Interactions

Psychosocial intake	Diagnostic communication	Interview
Psychologist: And how did you come to UNOP? Mother: Because the doctor told us the baby is not well. Psychologist: You took the results back to the doctor? Mother: She said bring me back the results and depending on the results, I’ll know what to do. She called the ambulance… Psychologist: And he is sent from [that town[ to UNOP? Mother: Yes, because they said that if he had that illness we must come here. Psychologist: What illness? Mother: The told me that maybe he had cancer or anaemia Psychologist: All this information is very useful to us…. There are many types of cancer but we suspect that [your son] has blood cancer…Our body is made of certain particles or seed that we call cells. Cells are not even the size of an ant. They are very small. They are like microorganisms, we cannot see them with our own eyes, I need special equipment to see them…. Cancer is also a cell, but this is a bad cell that instead of helping the body, it hurts it…We know it’s born in the bone marrow but cancer likes to send seeds to other parts of the body.	Oncologist: These leukaemia cells are in the blood but they can travel to the brain and the testicles…. The problem is that these cells can travel through the blood to the spine and then the brain. So, in leukaemia we must also give treatment through the spine. Because through the veins it won’t get to the brain, there’s a barrier that doesn’t allow it to go up to the brain…but that is all done with anaesthesia, he won’t feel pain…These medicines will be applied little by little…The complete name of the illness is acute lymphoblastic leukaemia because the leukocytes are affected, and acute because is recent, not too long ago. And it’s B cells. We have B cells and T cells. T is more aggressive, in this case he’s got the B, so it’s good news, they respond better to the treatment, the doses of medicines are lower and there’s a higher chance of healing. Do you have any question? Mother: No. Oncologist: I know you will have more questions but since you’ll stay here you can ask us any time. Psychologist: And right now, with the news it’s difficult, our minds are blank and there are a lot of ideas. You don’t have questions but like the doctor says, during these days you can talk to us and we will do everything to help you.	Interviewer: Who was the first person who explained to you about cancer when you arrived here? Mother: Doctor XX. Interviewer: The doctor. How did he explain to you? Mother: He told me it was a disease in the blood, that were little balls walking through the body and that’s why my baby was going to receive treatment so the little balls couldn’t reach his brain. Interviewer: Do you feel that what you knew about cancer and what you know now after the diagnosis is different? Mother: I think so. Interviewer: How? Mother: Because it’s not the same treatment for all types of cancer. Interviewer: Have you talked to your family, your community, your village about cancer and what’s going on? Mother: They ask me how he is doing; they call me every day to ask about his health. I see him fine. The doctors tell me he is doing well.
Psychologist: Okay, I’m going to explain it to you. What did you know about cancer? What did you hear? Mother: I know it’s a deformation, a mutation of the cells, the bad ones. They don’t die, instead they infect other good cells. Psychologist: Where did you hear about it? Mother: I have seen some cases when they say he’s got leukaemia. I have read it’s in the red blood cells. And other types of cancer, some of them can be metastatic cancer and other don’t. That’s all I know. Psychologist: It’s in the white blood cells. Mother: Oh okay. Psychologist: I’m going to explain it to you. I’m going to use the whiteboard for a better explanation.	Oncologist: Tell me, what did they tell you when they sent [your son] here? Mother: Well, the doctor told us that… they found bad cells, they maybe be leukaemia cells, cancer cells. This is why the doctor sent us here, for treatment. Oncologist: We examined his blood in the microscope and we did see those same cells…. We already have the diagnosis and we can confirm that [your son] has leukaemia. What do you know about leukaemia? Mother: This morning the social worker talked to me and said there are two types of leukaemia, I don’t remember the names. Oncologist: If you want, I can explain a little bit. All the cells we have in our body are born in the bone marrow, it is located inside our bones and it creates the cells in our body. There we find the red blood cells, where the haemoglobin is, they give us colour, then we find the white blood cells, which are the body defenses…	Interviewer: And did you understand what cancer is? How did you understand it after their explanation? Mother: I did understand it theoretically, but I had a hard time assimilating it because he was my son. I understood it as a cell that didn’t form well and it started to multiply reproducing more cells if its species. And that was what affected [my son’s] cells. Interviewer: Do you feel like your point of view about cancer has changed after you received the diagnosis? Mother: No, in the sense that I'm worried he could relapse. I’ve heard some cases where the child is finishing his treatment and then he relapses or the illness comes back. That’s the thing I'm worried about. I cannot change my point of view about cancer because it has a cure but the percentage of children cured is really low, to say it in a way. I'm scared to think, that’s the truth.
Psychologist: Do you understand what I'm saying? Mother: Yes. Psychologist: Chemotherapy is the medicine used worldwide to treat cancer. It’s a group of medicines, some are taken like a pill, some are injected in the vein, others are injected here, and here. What the medicine does is destroy these cells. You see that I didn’t destroy all of them, that I left two there. Because many times, chemotherapy tries to destroy all of them but cannot do it. Some cells are left there hidden, and later they could wake up and form another mass again. So, depends on what type of mass it is, on its name and surname, what kinds of cells it’s made of, and then we can decide the type of treatment…. Maybe they’ll give her the medicine first or the surgery, depending on the size. If it’s too big, they give medicine first to reduce the tumour and reduce the risk of the surgery. Questions? Mother: No. Psychologist: So, tomorrow he’s going to the biopsy, when they have the results, the doctor will tell us, and we’ll seat all together, including the doctor, and he or she, depending who’s in charge, will tell us the results, if it’s benign or malign.	Oncologist: It’s a [tumour name]… Generally, it grows in the [lymph nodes], you have seen that the [nodes] get bigger in our neck when we get an infection, we have those [nodes] in all parts of our body, and we don’t know why, a cell transforms and become malign and they start multiplying, without any control, that’s why they are called malign, because if they are not stopped, they advance and keep growing. And [this] tumour, as I was telling you, is one of the most fast-growing tumours. When you first saw it, it’s possible it was starting, it’s not something that was there for months or weeks. It grows very quickly…So, it’s not like you didn’t take good care of him and didn’t find out. It simply appeared like that, very fast. … Father: Ok, good. Now, one question, how long is the treatment? Psychologist: The doctor talked about six cycles, so it’s more or less 6 months. Father: Ok. Psychologist: It could be a little bit more if it delays as a result of an infection or something like that, but in average, 6 months.	Interviewer: What had you heard about [cancer]? Mother: When you are not living it, you don't pay attention to it, I used to see commercials about cancer, but we never searched for information. Interviewer: Have you had someone close or from the community who had cancer? Mother: No. Interviewer: You said that when you came here, the psychologist talked to you about cancer, how did you understand this disease? Mother: She said cancer is a bunch of bad cells, but chemo will destroy the cells, even the good ones and that’s why he loses hair, is nauseous and feels down; but that’s the only treatment. She said we need to take care of him, take his temperature, avoid that sick people are around him and all that. Interviewer: Then they gave you the diagnosis, you said you talked to the doctor and the psychologist and they explained to you again, this time specifically about your son’s disease. Did you have the chance to ask questions and clear your doubts in that moment? Mother: Some of them, sometimes you don't want to ask in the moment; but he said I came on time it spreads, but for now it was only in the stomach, the marrow was clean, that he was going to receive 6 months of treatment.
Psychologist: Now that you know agriculture, when we plant a corn seed, the first thing this seed is going to do is to produce roots, then the plant will grow, then the corn will appear and if I take the corn to eat it, the plant will die by itself. Our body is made of little things like the seeds called cells…. What happens with cancer? Cancer is also a cell, these cells are no longer good, they are bad. Bad cells are born, they grow and here’s the problem, they multiply in an abnormal way, they reproduce without control and in a disorganised way. Also, bad cells don’t die by themselves. Because the cancer cell is very similar to when a bug comes in to infect my crops. If a bug comes in there, it will kill this plant and it will want to kill the others. If I want to plant new crops here, what should I do? Mother: To clean. Psychologist: Yes, clean and cure the soil. Same thing happens with cancer, I need to take it out of the body and kill it because it won’t die by itself. Now the question, why does it happen? Like I told you, we are going to be very honest with you, doctors worldwide, in the United States, Mexico, South America, Europe, have been investigation the cause of cancer in children, and unfortunately, we haven’t had an answer. We still don’t know the cause… What I want you to know and keep in your mind and heart and also share with your husband is that this is not your fault or you husband’s fault. This is no one’s fault. This is an accident and something that happens because is in the child’s own genetic process and unfortunately, it happens to a lot of children. It sounds bad, but it’s like a bad lottery, something that happens we don’t know why but we do know how to treat it. That’s the most important thing. Do you understand? Mother: Yes.	Oncologist: Well, we have been able to confirm, after the results of all the tests, that [your son] has a mass inside his kidney…. If you like, I can show a little bit here so you can see what’s happening. Seat down, please. These are the tests of [your child], made yesterday [date]. These are you [child’s] tests. (showing images) And that tumour, through the blood that is passing there constantly, can start growing and send seeds to other parts of the body…. These kinds of tumours always need treatment because we already talked about the seeds they can send throughout our body… Right now, I cannot tell you without a doubt that [your child will] be cured. I don’t know what kind of tumour it is yet. I don’t know in what stage it is, but what I can tell you is that this is one of the most curable cancer in children…. If it’s discovered at an early age, just like [your child], and if it’s Wilms, 80% up to 90% can be cured. With a treatment that requires a big surgery, and medicines, [your child] probably won’t need radiotherapy…Do you understand? Mother: Yes. Oncologist: Do you have questions? Mother: You talked about surgery, and you know when to do it because you said this is growing, so do you know when to do it? Oncologist: Of course, it’s very fast…So, we need to do this urgently…Next Wednesday there’s a space for [your child], because this cannot wait. Mother: My husband was telling me that God loves us so much, because he knows why he sent us here, after those symptoms. Oncologist: That’s what he told you. After a bad thing, good news. Mother: Thank you very much. I'm in your hands, first God and then you.	Interviewer: Had you heard about cancer before this news? Mother: Yes…but only about leukaemia. But I never heard about what my [child] has, you learn a lot here, you learn that there are many diseases and how they develop. Interviewer: What did you know about leukaemia? Mother: I heard that… in children, the blood becomes watery. That there was no cure… because where I live, a few days ago a young boy died because it. I don't know if they brought him here, but he died a few days ago, they said he had leukaemia. Interviewer: How did you feel about this boy who died? Mother: Sad because we were very close to his family. He deteriorated very fast, he was very thin; me and my family thought that disease was very difficult… then he died, it was sad. Interviewer: When you arrived here and they talked to you about cancer, how did you feel about that boy’s story? Mother: I didn’t know much, I learnt to fight here, fight for my son. As the doctor told me, well actually the psychologist told me first, that there is no death for cancer, there is cure. I wish all the parents will fight for their children, I know it’s hard. Sometimes I feel sad and I understand but we have to fight.
Psychologist: Cancer is also a cell, but this is a bad cell. It’s like a bug enters my land, what will the bug do? Father: It starts reproducing. Psychologist: Yes, and what happens to my crops? Father: It kills them. Psychologist: And if a leave that bug there, am I going to be able to plant again? Father: No. Psychologist: What do I have to do then? Father: Maybe find another place in the field. Psychologist: Or cure the soil. Cancer is also a cell, but it’s a bad one, it’s like that bug that penetrates my crops. It contaminates my crops. Cancer, instead of helping the body, it harms it.	Oncologist: Any other question? Father: So, he’s going to stay here for 3 to 4 weeks, right? Oncologist: It could be less than that or even more, that depends on how he responds to treatment, but overall, it’s 3 weeks. 3 or 4 weeks they stay here because that’s when we give him the most aggressive medicine trying to clean out his blood, we’ll be taking care of his fever, cough or any other symptom. And when he gets better you can take him home. Psychologist: One question doctor, the treatment involves chemotherapy, right? Oncologist: Yes. The treatment will require him to take some syrups, pills, or saline solution. They are called chemotherapy, and they are special medicine to clean the blood, take out the cancer from the body and we achieve that through intravenous saline solutions or pills. We will explain everything; you will have everything written on a paper so you don’t have troubles with all these. The important thing is that you understand this is a delicate illness and we have to take extreme good care of him. We will explain you when to bring him to the hospital. When you take him home and suddenly, he’s feverish you must bring him to the hospital, to the emergency room. This is your hospital, if he falls down you bring him here, nowhere else. This will be his hospital for the next 2 years, everything he needs, we will provide.	Interviewer: When you arrived here, who explained it to you? What changed in the way you understood cancer? Father: They told me his type of cancer was leukaemia. I wondered where it came from, they said it was a cell that started to grow, and it was an enemy for the white cells and started to kill them all. He had fever and was very pale. We didn’t know and didn’t have the experience. They told me not to worry, that we were going to make it, they he will receive the right treatment… I am a farmer, so, they told me it was like when I sow and a poisonous animal kills my plant, they told me to think it like that, that’s the baby’s life, a cell wanted to kill him. But they also told me not to worry, that they were going to treat him with chemotherapy, I asked what that was, they said it was a medicine that looks for the enemy to eliminate it, don't worry about the symptoms, he might vomit or have fever, he might cough, but don't worry because that means that the medicine is working and also don't worry about the hair loss, he won’t stay like that forever, the hair will grow back. I thank God for all the wisdom the doctors have, how they treat the child, what they taught me about cancer and how common it was. I talk to people here, there are several types of cancer, there are masses, which they operate and there is the leukaemia that is in the blood. Since today I believe that there is cure and possibilities.

UNOP, Unidad Nacional de Oncología Pediátrica.