**5. Discussion**

*Human Blood Group Systems and Haemoglobinopathies*

*4.6.5 Friends and other supporters of Jules*

*4.6.6 The absence of care professionals*

the feeling of abandonment by them.

*4.6.7 The request for recognition of his experience*

outsiders to the family.

he is grateful for this.

beyond his death; unlike the other daughter who died before him. While the dead father remains present (illustrated on the drawing), the sick sister' s absence from the drawing may signify Jules' avoidance of this sister and therefore, avoidance of the threat of death that accompanies her illness. On a psychological level, Jule's drawing may signify that, the living sister is dead, while the dead father remains alive. This complexity of Jules's experiences is illustrated within his drawing.

Jules perceives the children in the neighborhood as helpers and supporters concerning his sister's illness. They are friends who support him by protecting his sister during games and other interactions with her. "*The children do not bother Paulette. They go to school and come back together. They do not cause any problems. Even when we play together, there are no provocations*." Of course, these friends know that Jules is protective of his sick sister. They support him in this way by also protecting her and

Jules' friends are curiously absent from the drawing. He differentiates them from the members of the family. He does not make them part of his family; and hence their absence. In a cultural context where people with whom the subject has special relationships are considered to be members of their family [14], the absence of friends of the drawing is significant. This can tell you that Jules differentiates his friends from family members. Therefore, the support provided by the friends does not compensate for his feeling of abandonment by family members. They are considered outsiders and they may have no obligation over his situation. It could also exhibit his need

Healthcare professionals (hospital and traditional healers) are completely absent

It is also possible that Jules did not draw them because their presence acts as that of the disease and, obviously, the risk of contamination and death. This absence can indicate a psychological effort to avoid anything that reminds him of the disease. In Jules, this absence can refer to the feeling that the traditional therapist does not protect him against the idea of possible contamination by the disease. It is possible that he did not draw the hospital professionals in order to protect himself against

At the end of the drawing, Jules handed his drawing to me while smiling and he asked me to protect it well because it is very fragile. By a projection mechanism, he

At the end of the meeting, with the agreement of Jules and following the requests

of his elder sister, we presented the drawing to her and the mother. It is possible that Jules found by this means a way to make them understand his experience with Paulette's disease in a family context where talking about the disease remains taboo. Particularly moved by finding themselves in the drawing, the elder sister and the mother criticized the "non-human" nature of the characters he drew and the absence of the use of many colors on the drawing. The elder sister put this in relation to the pedagogical approaches used at school, which do not enable children to draw freely.

could be asking me to pay attention to his psychological suffering.

for more support from within as the outside support could be a privilege.

from the drawing. This absence can translate into their investment by Jules as

**50**

With the exception of the sick child who is named by Jules during the interview, parents and siblings are referred to as parents or siblings. The eldest daughter is referred to as "*my big sister*," the brother who is a taxi driver as "*my older brother*," the sick sister as "*the last daughter of mother*," this is very important as she also died of sickle cell anemia. He does not refer to her as 'sister' maybe because he wants to distance himself from the condition which eventually led to her death, the things he fears most, and that have become a part of his family. This shows the specificity of his links to his sick sister. Jules refers to her niece as "*the daughter of my older sister*," thereby differentiating his brothers and sisters from his niece. He referred the father and mother as "*father*" and "*mother*."

Four people appear in Jules's drawing. Referred to in the interview as "*my older sister*," the eldest daughter is designated on the drawing as "*the big sister*." The brother who is a taxi driver is, however, named "*big brother Willie*" on the drawing while he is referred to as "*my big brother*" in the interview. The father and the mother are designated in the drawing by "*daddy*" and "*mother*." However, the father is absent from the interview. The absence of the father within Jules' speech is not synonymous with his absence in the psychological universe of the interviewee, as he is present on the drawing. This makes the drawing a mediator to speech and a complementary tool in the interview.

Not all the people mentioned in the interviews appear in the drawing, and those in the interviews are named differently in the interviews. This account for Jules' psychological dynamics concerning his links to family members and the complexity of these links.

The valorization of the traditional treatment (as financially expensive for the families as the medical treatment) contrasts with Jules persistence of the feeling of insecurity regarding wizards. It suggests that the treatment is not necessarily valued for its therapeutic efficacy. In a context where the traditional practitioner is considered as the intermediary between the ancestors and the living [44], it is forbidden to devalue their treatment. To do so would amount to devaluing the ancestors and running the risk of punishment, which could lead to death. The ancestor is incomparable [45] and therefore not criticizable. It can be dangerous to criticize the traditional treatment, as Jules emphasizes that it "alleviates" the fear and concerns the whole family.

Jules did not mention any consultation with a pastor, a priest or an imam. This is a problem in a context where families normally invest religious institutions (churches and mosques) to express their suffering and overwhelming misfortune [46]. It is possible that Jules, whose family is Christian, avoided talking about the care of his sister by the priest or by the pastor to a researcher whose family is of Muslim descent. He would have considered it disrespectful to talk about his religion to a researcher belonging to another religious denomination. It is also possible that, in not telling the researcher about his sister's consultation with priests or pastors, this young boy avoided hitting the researcher's religious sensitivity. He may not have talked to the researcher about this so as not to make him feel uncomfortable during the meeting.

In addition, this study showed that the traditional healer assigns, the uncle rather than the mother in the administration and follow-up of the care of the children and the family. This can be understood by the fact that the woman is often considered by traditional healers, as a being who can reduce the effectiveness of the treatment if she were to touch the patient [47]. Consequently, men are more often empowered to monitor and to enforce the prescriptions of traditional healers. It is also possible that the exclusion of women in this follow-up is motivated by the fact that they are considered to be responsible for the transmission of the disease

to the child [14] and hence as a "stain" in family [4] and a hindrance to traditional treatment. In this case, it would be interesting to understand how mothers and fathers experience the care of their children with sickle cell anemia by hospital and traditional healers.

Jules's family agreed to participate in the research despite the fact that sickle cell anemia remains a taboo subject in African families [2]. It is possible that this family invested the research as a means of understanding the experience of the brothers and sisters of the sick child. The researcher can be considered a mediator who allows the family to talk indirectly about sickle cell anemia with the sick child and his siblings. The parents do not themselves talk with the children about this disease, but they prefer that someone else did it. Although this can be a coping mechanism due to the guilt they experience regarding the situation, they consider themselves as parents who have transgressed a cultural norm whose consequence is the child's illness. This behavior of the parents remains complex. Anyway, the participation of the family in this research shows the interest they had in understanding the experience of all the children in relation to the disease.

This research also allowed Jules to tell the researcher, his family and care professionals his experience with his sister's illness despite it being a taboo subject. It has therefore d upset the norm or violated the family taboo on sickle cell anemia. It would be interesting to understand the impact of Jules and his family's participation in this research on the mother, the sick child and Jules himself.
