Being an adolescent despite the restrictions and discrimination imposed by sickle cell disease

Qualitative study, conducted at a reference service in the state of Bahia, Brazil between March and June 2018. Ten adolescents with sickle cell disease participated. The data were obtained through drawings-and-stories with a theme and semi-structured interviews and analyzed based on Grounded Theory.

Results

The experience of adolescents with sickle cell disease is represented by the core category of “trying to be a normal adolescent, despite the restrictions and discrimination the sickle cell disease imposes”, and five other categories: “Feeling different from other adolescents”, when they see that their growth has altered, that they experience medical problems and compare themselves to other adolescents, “Living with restrictions in their daily routine”, of physical and food-related restrictions, required in self-care and disease management to achieve quality of life, “Living in bad situations”, in the experience of pain, constant hospital visits, fear of death and uncertainty about the future, “Feeling like a normal adolescent”, when they were able to maintain their social activities, including school, friends, and family, and “Realizing the stigma”, when they fear the discrimination and adopt ways to hide that they have the disease.

Conclusion

By seeking to be a normal adolescent, the participants aspired to take control over their own lives, avoid breaks from the routine and meet social expectations, protecting their identity from labels and discrimination.

Chronic disease; Anemia, sickle cell; Self Care; Social discrimination; Social stigma; Adolescente

Synthetic picture of adolescents’ statements
Causal conditions: FEELING DIFFERENT FROM THE OTHER ADOLESCENTS Perceiving altered growth and development A have an 11-year-old colleague who is taller, stronger, more developed than me. Others who do not have the disease evolve faster than those who have the disease. (Scoob, 11 years old). Experiencing clinical problems If the person gets hurt, it creates that very big injury, then the whole leg has to be isolated. I had an injury here in my leg that needed repeated dressings at the CSU [health service]. I kept the leg injury for three months. (Manchester Black, 13 years old). I’ve tried to play. I played as a winger, but then I stopped, because I saw that it was not working anymore, because the legs hurt too much [...] Everything is bad, I cannot go out in the damp night air, I cannot go out at night [...] (Messi, 11 years old). Comparing themselves to other adolescents Adolescents without the disease can play soccer, they can do everything, they can do whatever they want. Those who have the disease are isolated from playing ball. If you play ball, your legs hurt; if you run, your legs hurt; if you play capoeira, your legs hurt; if you play basketball, your arms hurt. Everything, any sport, hurts. (Manchester Black, 13 years old). A normal teenager [...] she doesn’t feel much in the lungs, while adolescents with sickle cell disease feel a lot in their lungs [...] (Wonder Woman, 10 years old). Being different due to the restrictions There are things they [adolescents without sickle cell disease] can do and then I don’t. Like walking a lot. My friends like to go out, walk and sometimes I do not go out with them because of sickle cell disease, because I cannot get too tired [...] It’s bad because I’d like to do pretty much everything and there are things I can’t do. (Di Monaco, 13 years old). Only once my grandmother did not want me to do physical activity, because it would harm me, and I felt different because I could not participate [...] Sometimes my mother tells me not to get too much weight, not to exercise too much, that it can hurt. (Di Monaco, 13 years old).
Context: LIVING WITH RESTRICTIONS IN THEIR DAILY ROUTINES Restricting their daily activities In games, I get tired faster than other people [...] when I’m playing with my friends, we’re playing, I’m already tired and they’re not. (Scoob, 11 years old). You can’t play ball. You always have to go to the doctor [...] (Messi, 11 years old). Restricting their diet [...] I feel like, like fear of eating something and feeling bad, or having some bad pain there [...] I cannot eat the pig, because I can feel some pain, because of the meat [from the pig] because like my father feels [...] he tells me not to eat it either. Then I keep thinking that, if I eat it, I might feel some pain. (Goku, 14 years old).
Intervenience: EXPERIENCING BAD SITUATIONS Experiencing intense pain It hurts, man! It hurts everywhere [...] it hurts in the back, arms, legs, even the knee... it hurts everywhere, you have no idea [...] if I could control it, that’s fine, but it hurts, it hurts, it feels like your arm is going to crack, that something is going to happen on the outside, your bones look like they are swelling, your arms look like they are broken, it hurts a lot! If you had it, you’d know how it hurts. (Manchester Black, 13 years old). I feel the pain that hurts in the legs, in the arm, in the spine. The gallows, that is, the pain that we feel, that he is feeling when he is hanged, and that is the pain that I feel because I have sickle cell anemia [...] I lack the courage to do anything,I feel incapable. (Manchester Black, 13 years old). Undergoing consultations and laboratory tests He doesn’t get examined like I do either [...] I feel bad because it bothers me to have to go out to go to the doctor, get tested. I don’t like it very much [...] it’s a bad thing because no disease is good, is it? (Goku, 14 years old). Being hospitalized frequently It’s something more or less. The disease keeps bringing the person straight to the hospital. In that case, it’s bad. But also, sometimes, she takes her to the hospital and finds out that he’s got something else without knowing anything. (Scoob, 11 years old).

Synthetic picture of adolescents’ statements

Strategy:
FEELING LIKE A NORMAL ADOLESCENT
I think that because I have the disease, it does not mean that I am not normal like others, just that I am a little different, with more care [...] a little more care than other people [...] even if I have sickle cell disease, that doesn’t mean I can’t do the other things like a person who doesn’t have it. (Ana Karla, 15 years old).
I feel normal. Nobody is perfect! Each with his flaws, but I have nothing to talk about no. I’ve never felt great pain because of it. It has never got in my way [...] I have never stopped doing anything because of it. I do everything I want to do. It’s all normal for me. (Goku, 14 years old).

Consequence:
REALIZING THE STIGMA
Feeling ashamed to have sickle cell disease
At school, my friends don’t know, because I don’t count, because I’m afraid they’ll let me go, that they won’t want to play with me anymore [...] I think that, because I have sickle cell disease, my friends will isolate me. (Manchester Black, 13 years old).
My friends do not know that I have the disease. I didn’t tell [...] I’m ashamed [...] I had a girlfriend and never told her either, because I was ashamed, because it’s a bad disease [...] that has no cure [...] so I didn’t want to tell. (Messi, 11 years old).
Fearing discrimination for being sick
I’m ashamed to have sickle cell disease [...] you have a disease, your friends find out and you will no longer be able to walk with them; you have to remain isolated. (Manchester Black, 13 years old).
I feel that because they don’t have the disease, they may feel better than me. Just because I have the disease, I cannot do that, and also, sometimes, the person thinks that I, with the disease, will not manage. (Scoob, 11 years old).
Facing the stigma of sickle cell disease
I am not ashamed, because I think it is a good thing and there is nothing bad in the disease [...] It is not a disease to hide [...] I’m not ashamed to tell anyone no, but my girlfriends never knew and none of my friends know that I have it, but I’m not ashamed of anything, because it’s not a communicable disease or anything like that. We just don’t talk about it. (Goku, 14 years old).
I’ve had a boyfriend and he knew about my illness. I told it myself and my friends also know, but they treat me normally. (Ana Karla, 15 years old).
Feeling powerless in the face of sickle cell disease
I don’t think I’m going to be able to study and work; I’m not going to be able to do anything because of sickle cell disease. Sometimes I feel very bad about it; I feel sad because it limits me. (Ana Karla, 15 years old).

Escola Paulista de Enfermagem, Universidade Federal de São Paulo R. Napoleão de Barros, 754, 04024-002 São Paulo - SP/Brasil, Tel./Fax: (55 11) 5576 4430 - São Paulo - SP - Brazil
E-mail: actapaulista@unifesp.br

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[1] Corresponding author: Evanilda Souza de Santana Carvalho E-mail: evasscarvalho@uefs.br