**3.1 Specificities of the method**

The methodology of this research is similar to that presented in a previous research [36]. In sub-Saharan African cultures, children who talk to professionals about themselves or anything else are supposed to have been given permission by their families to do so [38]. It is usually parents who talk to professionals about their children, who on their part are obliged to listen and to talk only when adults allow it [39]. Talking with children about sickle cell anemia is not easy and it requires the researcher to make an alliance with the family. This research, which took place in Cameroon worked to get parents to allow their children to talk with the researcher about the way they experience the care of their sick brother or sister. In fact, many children are not allowed to speak to strangers and to speak only to adults who are intimate with the family [40].

The parents signed consent forms concerning the participation of the family and children in the research and designated which of their children would participate. These children were allowed by their parents to speak with the researcher about their family, their sick brother or sister and his/her illness. Indeed they had a mission to talk to the researcher who informed them about their freedom to participate in this research. The method includes an individual interview with each child and a drawing, preceded and followed by a group time. Before the interview, the mother, in front of the whole family, talks about the relations between her sick child and his siblings; the children listen and keep quiet. After the interview and the drawing, the adults question the researcher and the participating child about the content of their meeting. It is therefore an individual meeting, but it takes place in a group setting allowing children to speak as freely as possible.

We report in this article the case of Jules. With Jules, we talked about the illness, his relationship with the sick child and the family. In Jules' interview, there is an important place for treatment and its effects on the sick child, on his siblings, on his mother and father and on extended family members. This interview was done in the absence of the other members of the family whom we asked to leave the family room to allow for confidentiality. The interview was followed by the drawing session after which the analysis of the drawing was done. The family drawing test followed the approach of [41], taking into account the cultural referent as advocated by [42]. We asked Jules to draw his family on a sheet. The drawing, complementary to the interview allows the child to project on the sheet what he thinks and experiences about his family, his sick brother and his place in the family.

#### **3.2 Jules and his family**

In accordance with the ethical requirements, we gave fictitious first names to the persons to guarantee the anonymity and the confidentiality of the meeting.

Aged eleven and a student in fifth grade, Jules is the third child out of five siblings and the older brother of Paulette, his sister with sickle cell anemia. After the death of his father, a nurse who had previously worked in his home village, Jules, accompanied by his sick sister and his mother emigrated from the village to settle in Yaoundé at his elder sister's home. This sister was a public school teacher. One of the reasons for this rural exordium is the medical follow-up of Paulette, eight, with sickle cell anemia. She is the second-to-last of the five siblings, three boys and two girls. The youngest of two siblings and three boys would probably have died, according to Jules's older sister, following sickle cell anemia crises. In Cameroon, sickle cell anemia is not well enough known by all public health professionals and some people still do not recognize nor know its symptoms.

Paulette's illness was diagnosed at the age of seven, when she was first hospitalized following an anemic crisis in a hospital in Yaoundé. The unavailability of prenatal diagnosis and the non-systematization of neonatal diagnosis of sickle cell anemia in Cameroon leads to children being diagnosed relatively late during one of their hospitalizations.

Paulette is usually hospitalized between one and two times a month following anemia attacks, the main symptom of her illness. Her mother, estimates the average duration of each of her hospitalizations to be between 2 and 3 days. During these hospitalizations, her older sister and her mother often assist her.

Jules lives with the eldest daughter in the family, his mother, his sick sister and his one-year-old niece. The eldest daughter of the siblings is separated from the father of her daughter and she is the only child who is a parent herself. Paulette is the only sick child and the mother of the family is unemployed. The eldest daughter and the second child of the siblings contribute to the financing of Paulette's care. Siblings are therefore a family resource in the financing of care. These first two siblings are employed and the last two are students.

## **4. Results**

Paulette's fits give rise to many hospitalizations.

#### **4.1 The financing of medical care**

Jules does not know the cost of Paulette's medical care. He knows, however, that it is his older sister and his paternal uncle who finance this care. He exclaims "*Ah! I do not know the price. Mom and my older sister do not tell me the price. My older sister pays the hospital. There is also my uncle and my brother who also gives the money for the hospital*."

He behaves as though he was forbidden and/or forbade himself from knowing or asking adults questions about the cost of his sister's medical care. However, he is grateful for the uncle's financial support to his mother and older sister. He does not mention the involvement of his brother who is a taxi driver in financing the care.

Her older sister and mother usually accompany Paulette to the hospital. This elder sister plays both the role of father and sister to Jules and Paulette. She finances the care and assists her mother at Paulette's bedside during hospitalizations. In the end, she plays the role of substitute for the deceased father and the mother for the sick sister. Her status as the eldest daughter of her siblings demands that she cares for her younger siblings, in keeping with the cultural norm that [40] makes the eldest son especially, and the eldest sister also, a parental figure for her brothers and sisters in African families. Jules specifies, "*My sister brings Paulette to the doctors of the foundation when the blood reduces*." Therefore, he refers to this sister as a mother for both Paulette and himself.

**45**

*Sickle Cell Anemia, Representations and Care: Experience of a Brother of a Sick Child…*

Jules refers to the fact that the medical professionals at the hospital do not care about his family and his siblings. Their interest is in Paulette and the relief of her crises. Medical treatment is only given to the patient. Jules feels abandoned, forgotten and neglected by these professionals. He says, "*they do the remedies only to Paulette*" which signifies the sentiment of disregard of his own suffering at the

Jules refers to the fact that Paulette is usually brought to the hospital during her seizures. "*When her hands turn white or the eyes start to turn red, it's because the blood is already reducing. When the blood reduces, she becomes very tired and heats a lot. We* 

The hospital is invested as having a curative function, given in urgency. All of this suggests that the family seeks hospital care only after failures of self-medication and preventive measures that it would have implemented to avoid or to relieve the crises. Obviously, this behavior of the family is an adaptation to the expensive nature of healthcare in a context where it is not reimbursed and where health insurance is non-existent [16]. This poses the problem of crisis prevention via the check-up of children with sickle cell anemia in sub-Saharan Africa, in general, and

Paulette's seizures are treated in the hospital via transfusions, which relieves seizures for a time without eliminating them. Jules evokes the infernal cycle of crises, hospitalizations and returns home. He says, "*in the hospital, she is given a lot of blood. When she takes the blood from the hospital, she comes home. It's always like that for Paulette*." He recognizes the effectiveness of transfusion in relieving crises, but temporarily. What arouses him is an anguish of death concerning his sick sister

Paulette's illness is thought of as "*a disease of the blood*." Jules knows, therefore, that the "*affected*" blood must be removed from Paulette's body. "*In order for it to end, you have to empty all the blood from your body. Like that it will come out with the disease*." In his view, this is not what hospital care professionals do because they put

Hospital care professionals are referred to as "responsible" for the chronicity of crises. Jules disqualifies them and thinks that they cannot permanently relieve these crises. "*The people in the hospital just put the blood into the bad blood. That is why the disease always comes back. When they put the good blood in their body, the bad blood eats up all the good blood, and the disease begins again*." This recognition of the inefficiency of hospital care arouses his anger against these professionals whom he designates as ineffective against the worsening of his sister's state of health. It is possible that Jules, by this anger, projects on these professionals, his feeling of helplessness concerning the crises his sister goes through and the feeling of concomitant guilt. Medical professionals can also understand it as a cry for recognition and take into account his experience. The hospital is designated as responsible for the death of the last daughter of the mother, who died from a sickle cell anemia crisis during her hospitalization. "*They put false blood in her body and she died. It was not necessary to put this blood in her body. When they put that blood, she died two days later. We were only called to be told that the child is dead, that we should take her body to the morgue*." As a result, Jules shows distrust of the hospital, hospital professionals and the handling of crises by these professionals whom he designates as responsible for the death of his sister.

**4.3 Recognition of non-effectiveness of crisis treatment in hospitals**

new blood in the sick child's body and do nothing about the "bad" blood.

*DOI: http://dx.doi.org/10.5772/intechopen.90995*

hands of the professionals in the hospital.

*bring her to the hospital*."

in Cameroon, in particular.

"*When I see it like that, my body trembles*."

**4.2 The attendance at the hospital during crises**

*Sickle Cell Anemia, Representations and Care: Experience of a Brother of a Sick Child… DOI: http://dx.doi.org/10.5772/intechopen.90995*

Jules refers to the fact that the medical professionals at the hospital do not care about his family and his siblings. Their interest is in Paulette and the relief of her crises. Medical treatment is only given to the patient. Jules feels abandoned, forgotten and neglected by these professionals. He says, "*they do the remedies only to Paulette*" which signifies the sentiment of disregard of his own suffering at the hands of the professionals in the hospital.

#### **4.2 The attendance at the hospital during crises**

*Human Blood Group Systems and Haemoglobinopathies*

some people still do not recognize nor know its symptoms.

hospitalizations, her older sister and her mother often assist her.

siblings are employed and the last two are students.

Paulette's fits give rise to many hospitalizations.

**4.1 The financing of medical care**

for both Paulette and himself.

their hospitalizations.

**4. Results**

Aged eleven and a student in fifth grade, Jules is the third child out of five siblings and the older brother of Paulette, his sister with sickle cell anemia. After the death of his father, a nurse who had previously worked in his home village, Jules, accompanied by his sick sister and his mother emigrated from the village to settle in Yaoundé at his elder sister's home. This sister was a public school teacher. One of the reasons for this rural exordium is the medical follow-up of Paulette, eight, with sickle cell anemia. She is the second-to-last of the five siblings, three boys and two girls. The youngest of two siblings and three boys would probably have died, according to Jules's older sister, following sickle cell anemia crises. In Cameroon, sickle cell anemia is not well enough known by all public health professionals and

Paulette's illness was diagnosed at the age of seven, when she was first hospitalized following an anemic crisis in a hospital in Yaoundé. The unavailability of prenatal diagnosis and the non-systematization of neonatal diagnosis of sickle cell anemia in Cameroon leads to children being diagnosed relatively late during one of

Paulette is usually hospitalized between one and two times a month following anemia attacks, the main symptom of her illness. Her mother, estimates the average duration of each of her hospitalizations to be between 2 and 3 days. During these

Jules lives with the eldest daughter in the family, his mother, his sick sister and his one-year-old niece. The eldest daughter of the siblings is separated from the father of her daughter and she is the only child who is a parent herself. Paulette is the only sick child and the mother of the family is unemployed. The eldest daughter and the second child of the siblings contribute to the financing of Paulette's care. Siblings are therefore a family resource in the financing of care. These first two

Jules does not know the cost of Paulette's medical care. He knows, however, that it is his older sister and his paternal uncle who finance this care. He exclaims "*Ah! I do not know the price. Mom and my older sister do not tell me the price. My older sister pays the hospital. There is also my uncle and my brother who also gives the money for the hospital*." He behaves as though he was forbidden and/or forbade himself from knowing or asking adults questions about the cost of his sister's medical care. However, he is grateful for the uncle's financial support to his mother and older sister. He does not mention the involvement of his brother who is a taxi driver in financing the care. Her older sister and mother usually accompany Paulette to the hospital. This elder sister plays both the role of father and sister to Jules and Paulette. She finances the care and assists her mother at Paulette's bedside during hospitalizations. In the end, she plays the role of substitute for the deceased father and the mother for the sick sister. Her status as the eldest daughter of her siblings demands that she cares for her younger siblings, in keeping with the cultural norm that [40] makes the eldest son especially, and the eldest sister also, a parental figure for her brothers and sisters in African families. Jules specifies, "*My sister brings Paulette to the doctors of the foundation when the blood reduces*." Therefore, he refers to this sister as a mother

**44**

Jules refers to the fact that Paulette is usually brought to the hospital during her seizures. "*When her hands turn white or the eyes start to turn red, it's because the blood is already reducing. When the blood reduces, she becomes very tired and heats a lot. We bring her to the hospital*."

The hospital is invested as having a curative function, given in urgency. All of this suggests that the family seeks hospital care only after failures of self-medication and preventive measures that it would have implemented to avoid or to relieve the crises. Obviously, this behavior of the family is an adaptation to the expensive nature of healthcare in a context where it is not reimbursed and where health insurance is non-existent [16]. This poses the problem of crisis prevention via the check-up of children with sickle cell anemia in sub-Saharan Africa, in general, and in Cameroon, in particular.

#### **4.3 Recognition of non-effectiveness of crisis treatment in hospitals**

Paulette's seizures are treated in the hospital via transfusions, which relieves seizures for a time without eliminating them. Jules evokes the infernal cycle of crises, hospitalizations and returns home. He says, "*in the hospital, she is given a lot of blood. When she takes the blood from the hospital, she comes home. It's always like that for Paulette*." He recognizes the effectiveness of transfusion in relieving crises, but temporarily. What arouses him is an anguish of death concerning his sick sister "*When I see it like that, my body trembles*."

Paulette's illness is thought of as "*a disease of the blood*." Jules knows, therefore, that the "*affected*" blood must be removed from Paulette's body. "*In order for it to end, you have to empty all the blood from your body. Like that it will come out with the disease*." In his view, this is not what hospital care professionals do because they put new blood in the sick child's body and do nothing about the "bad" blood.

Hospital care professionals are referred to as "responsible" for the chronicity of crises. Jules disqualifies them and thinks that they cannot permanently relieve these crises. "*The people in the hospital just put the blood into the bad blood. That is why the disease always comes back. When they put the good blood in their body, the bad blood eats up all the good blood, and the disease begins again*." This recognition of the inefficiency of hospital care arouses his anger against these professionals whom he designates as ineffective against the worsening of his sister's state of health. It is possible that Jules, by this anger, projects on these professionals, his feeling of helplessness concerning the crises his sister goes through and the feeling of concomitant guilt. Medical professionals can also understand it as a cry for recognition and take into account his experience.

The hospital is designated as responsible for the death of the last daughter of the mother, who died from a sickle cell anemia crisis during her hospitalization. "*They put false blood in her body and she died. It was not necessary to put this blood in her body. When they put that blood, she died two days later. We were only called to be told that the child is dead, that we should take her body to the morgue*." As a result, Jules shows distrust of the hospital, hospital professionals and the handling of crises by these professionals whom he designates as responsible for the death of his sister.

#### **4.4 The traditional healer treats the patient and his family**

The traditional healer cares for the sick child, her siblings, her parents and her extended family because the illness is considered an ailment of the patient and his family.
