Article Type : Research Article
Authors : Njifon Nsangou H
Keywords : Culture; Taboo; Resilience; Sickle cell disease; Siblings; Cameroon
Objective:
This research aims to understand the resilience issues in Fidele, a 17-year-old
girl, sister of a child with sickle cell disease in Cameroon.
Material
and Method: The data were collected through an interview and a family drawing
in Fidele Family’s home. These data were
analysed
through the thematic analysis and a drawing analysis approach.
Results:
The family taboo regarding sickle cell disease makes Fidele feel strange about
her sick sister. She remains powerless in the face of the crises of her sister
with whom she is prettified by the parents concerning her surveillance and
protection against crises and aggressive behaviour coming from people outside
the family. This prettification is a potential factor of resilience insofar as
it makes her active with the child and hence his illness.
Conclusion:
This study highlights the relationships between resilience and culture and
shows the need to support the sick child, his siblings, his parents and the
professionals within healthcare institutions.
Sickle cell disease (SCD) is a
genetic disease that confronts the sick child and his family with his painful
and chronic crises associated with his physical changes, his regular and
expensive hospitalizations, his death thought to be imminent. It remains a
taboo disease in Cameroonian families where it is difficult to meet families
with less than 5 children [1]. Few studies have focused on the psychological
impact of this taboo on siblings of children with SCD. However the elaboration
by a subject of a traumatic event which he faces is important in the
attenuation of the impact of the effects that it generates on the subject
concerned and constitutes, via its narrative function, a factor of resilience
in this subject [2,3]. Concerned. This research which poses the problem of
resilience in siblings of children with SCD presents the psychological
repercussions of the family taboo concerning this disease on Fidele, a sister
of a child with SCD met in Cameroon. It includes the analysis of an interview
and a drawing of the family made by this child in the context of a research
whose framework and method will be briefly presented. It highlights the
complexity of the experience of this young girl and her parents in the face of
SCD and the taboo concerning this disease. Its objective is therefore to build
on this knowledge to open up the design of care systems that take better
account of the family and the sblings of children with sickle cell disease.
SCD is a genetic disease, supporting social and
cultural representations.
Sickle cell disease’s
clinic
SCD is a genetic, chronic and fatal disease.
A serious and fatal genetic disease: SCD
is the most common genetic disease in the world with approximately 500 million
individuals carrying the sickle cell trait and 50 million individuals worldwide
[4]. Initially distributed in areas endemic for malaria such as sub-Saharan
Africa, the migratory movements of populations have gradually modified its
distribution around the world [5]. Therefore, this disease is present in
practically all countries with populations originating from Africa and regions
around the Mediterranean. This
disease is a public health problem in Africa which is the continent most
affected by it with a prevalence rate of 2% in the general population and
mortality estimated at more than 70% in children under 5 years old [6].
Cameroon is one of the countries most affected by this disease with a
prevalence of 8.34% in the general population [7]. In Africa, the management of
SCD is expensive and the unavailability of bone marrow transplants and gene
therapy, the only effective treatment against crises, means that the deaths of
children under 5 years of age are numerous (8). SCD is an autosomal recessive
pathology transmitted to children by both parents and due to the presence in
the blood of an abnormal hemoglobin which causes a deficiency in the oxygen
supply of different organs of the body by red blood cells which have a reduced
lifespan. The rapid destruction of red blood cells leads to anemia and chronic,
unpredictable pain with which the patient identifies itself giving rise to
multiple hospitalizations and costly care for their parents [9-11].
A figure of persecution: In
a sub-Saharan African cultural context, the disease is thought of as an
"evil" capable of attacking all members of the family event after the
death of the patient [12]. The sick child is immersed in a society structured
by prohibitions, rites and traditional attitudes of which women are the
custodians [13,14]. A child's illness or disability is embedded in this
cultural structure that gives it meaning and produces effects.
SCD is thought of as a manifestation of the possession
of the sick child and his family by a sorcerer or by an evil spirit [15]. It
can also be experienced, depending on the case, as a request from the ancestors
to repair a transgression of an ancestral norm, addressed to the patient's
family [16]. The mother is usually blamed for this transgression; the
overprotection of the affected child by her and by the members of the family
constitutes a psychological defense allowing them to free themselves from guilt
and to place the child in the history of the family [16].
A family taboo: Talking
about SCD is a taboo among African families or those originating from Africa.
As a result, children with this disease more often have difficulty talking
about their disease and verbalizing their experience [17].
Emphasizes that parents hide the name of
the disease from children or some of them and that children hide their
knowledge of the disease from their parents [18]. She points that this taboo
constitutes for the children a means of protection of their parents and for the
latter the desire not to aggravate the suffering of the children. This author
also emphasizes that parents use this taboo as a means of protecting sick
children against social and family stigmatization.
The resilient function
of narrative capacity
Speech has a potentially calming effect and a
communicative, affective and containing function for the subject and those
close to him. According to the free speech between parents and children frees
the one that can be deployed between children, which promotes movements of
identification and differentiation between them, founders of their fraternity.
She formulates the hypothesis according to which this “good experience” with an
adult allows the child to experience the benefit of “thinking together” in a
co-construction of a story on the pathology and emphasizes it is in this
“Thinking together” that the pathology succeeds best in inscribing itself in
time, the time of the sick subject, the time of the other, the time of the
groups to which it belongs. The recounting of the disease has a resilient
function like the secondary elaboration for the dream, and the possibility of
recounting a traumatic event is essential in the attenuation of the impact of
the suffering on the sick child and for those close to him [2]. The resilient
function of speech also opens up possibilities for creativity, the thought work
it involves being both restorative and inventive. Therefore, talking to the
child, with the child and his siblings about his illness can help each of them
to contain it, to think about it and to transform it. The narrative capacity in
a subject concerning a potentially traumatic object such as a chronic disease
such as SCD is a factor of resilience for the patient and his relatives
confronted directly or indirectly with this trauma.
The meeting with the participant took place at her
parents' home.
Encounter clinic and ethical devices: This
article is based on research conducted with families with a child with SCD in
Cameroon where the floor is given; a subject who talks about himself, about
others or about anything else, is supposed to have been authorized by his
group, by his family to do so [20].
Fidèle is the child who is the subject of this research. Fidèle's mother was
met during a meeting of the Association of Parents of Sickle Cell Children of
the Chantal Biya Foundation in Yaoundé to which the object and methodology of
the research as well as its inclusion criteria were presented some
participants. Fidèle's mother, like 8 other parents, registered as a volunteer
to participate with her family in this research. The meeting with her family
and with Fidèle took place at her parents' home 3 days after the association
meeting. For ethical and confidentiality reasons, the data was anonymized and
fictitious first names assigned to the participants. The mother, in the
father's absence, signed the consent form regarding Fidèle's participation in
the research. Fidèle was reminded of her freedom to participate or not to
participate in the research. Fictitious first names were given to participants
to ensure the anonymity and confidentiality of the research. The recorded tape
was destroyed after the interview data was transcribed.
Encounter clinic and
ethical devices
This article is based on research conducted with
families with a child with SCD in Cameroon where the floor is given; a subject
who talks about himself, about others or about anything else, is supposed to
have been authorized by his group, by his family to do so [20]. Fidèle is the
child who is the subject of this research. Fidèle's mother was met during a
meeting of the Association of Parents of Sickle Cell Children of the Chantal
Biya Foundation in Yaoundé to which the object and methodology of the research
as well as its inclusion criteria were presented some participants. Fidèle's
mother, like 8 other parents, registered as a volunteer to participate with her
family in this research. The meeting with her family and with Fidèle took place
at her parents' home 3 days after the association meeting. For ethical and
confidentiality reasons, the data was anonymized and fictitious first names assigned
to the participants. The mother, in the father's absence, signed the consent
form regarding Fidèle's participation in the research. Fidèle was reminded of
her freedom to participate or not to participate in the research. Fictitious
first names were given to participants to ensure the anonymity and
confidentiality of the research. The recorded tape was destroyed after the
interview data was transcribed.
Fidèle and her siblings
Fidele's siblings grew up in a polygamous family. The
father, in his sixties, retired civil servant and converted into an
entrepreneur in the field of public works, after several years spent with his
first wife without having children, married Angela's mother, and housewife with
whom he had 7 children, 5 girls and 2 boys.
Aged 17 and a first year student, Fidele is the second child of her siblings. She is described by her mother as very calm and very motherly towards her younger siblings in general and Angela in particular. Angela is a 13-year-old girl with sickle cell disease, a middle school student, first year and penultimate of her siblings. The fifth born of this sibling died before the age of 2. The cause of her death is not known, everything suggests, according to the mother, that she died of sickle cell crises. Angela is the only child in the siblings with sickle cell disease. Her illness was diagnosed at the age of 7 during one of her regular hospital admissions for attacks of pain that were widespread all over her body. These attacks lead her, once or twice a month, to spend a short stay of about 2 to 3 days in the hospital (Figure 1).
Figure 1: Family genogram of Fidèle.
Data collection and
analysis
The data was collected through a semi-structured
interview followed by a drawing of the family. At the end of the interview,
Fidele was invited to draw her family on a sheet of paper with the colored
pencils made available to her. The drawing of the family was made by drawing
inspiration from the protocol of with the instruction "I would like you to
draw your family on this sheet".
The interviews were the subject of a thematic analysis
and the drawing, an analysis according to the grid of taking into account cultural specificities [15,22].
The results highlight the psychic impact of the family
taboo concerning SCD on Fidèle.
Talking about SCD as a
family: a psychological issue
Fidele maintains, as a family, a specific relationship
with the sharing, with members of the restricted and / or extended family of
her experience concerning her sick sister and her illness.
Silence
her experience to protect parents and siblings: Fidele
says of her parents' experience of her sister's illness “They are often
worried. They are also afraid. I don't want to aggravate their discomfort. If I
tell parents, it’s like I’m just reinforcing their concerns”. There is, here,
mutual parent / child protection via the family taboo on the disease and on the
experience of the disease. Fidele knows that her parents are suffering. She
wants to help them and alleviate their suffering. To do this, she is ready to
“lose” her place as a child to help her parents. She therefore maintains this
taboo so as not to psychically infect her mother with her suffering. The taboo
reflects the recognition, by Fidele, of her mother's suffering and her desire
not to aggravate this suffering.
SCD spoken through injunctions of care and protection of the patient: The disease is spoken in the family through parental and fraternal injunctions concerning the care and protection of the patient. Siblings and other family members do not talk to each other about their feeling and experience concerning Angela's disease. Siblings of the sick child are de facto parentalized by the parents. Their parents' involvement in Angela's protection and surveillance does not allow them to say and tell each other what they are experiencing regarding Angela's illness. Expressing or talking about their experiences to parents, adults and siblings seems to them not legitimate, not allowed. The only discussions between adults and children concerning Angela’s disease focus primarily on what to do with siblings to avoid or limit her crises. Fidele and her siblings are in fact receptacles for these parental injunctions that pay little attention to what they experience about their brother's illness. This arouses in Fidele a feeling of abandonment by the family for the benefit of her sick sister who draws the family's full attention to herself. This feeling of abandonment is accompanied by a feeling of jealousy towards Angela who, too, is kept away from any talk about her illness with her siblings.
Feelings and their
expression
Fidele expresses special feelings about her sick sister and her illness
Figure 2: Fidèle’s drawing.
The feeling of
strangeness concerning the sick sister
Fidele expresses her anger at Angela who cannot tell
him how she feels during her fits. “When she's sick she screams, she just
screams. It annoys people”. The absence of words to express her experience of the
illness and ultimately to express herself as a sick sister makes Angela a
strange person to Fidele. The absence of this word causes Fidele not to be able
to imagine her sick sister. There is, in fact, in this family, the absence of a
group or family ready to think about who can structure and contain the
children's experience of Angela's disease, which remains strange. Fidele's
suffering lies in her difficulty in telling her parents, siblings and sick
sister what she feels and experiences regarding her illness. This suffering
reflects her desire to have power over her sister's illness, to make sense of
it through a precise representation of her crises. It also reflects in her, the
alteration of the mechanism of identification / differentiation with the sick
sister. Angela remains a strange person who arouses in Fidele suffering and a
feeling of helplessness; helplessness in the face of crises that cannot be
avoided or eliminated, and helplessness in the face of a sister whom it is
difficult to imagine. Obviously, not understanding what the sick sister is
going through concerning her illness, not understanding what is happening in
her body and not representing her crises, leads Fidele to ask questions about
herself and her own identity when We know that children's ego is built through
the process of identification and differentiation from others [23–25].
The
feeling of guilt about the disease: Angela's
fits send Fidèle to the image of her as a bad sister. She says she wants to
educate hersister. But this desire comes up against the vulnerability of the
sick sister. The education Fidèle speaks of is in fact the protection of her
sister against crises. Failing to know what her sister is going through,
failing to speak with her about her experience, Fidèle becomes aggressive
towards her. This aggressiveness here has the function of creating a link
between her and her sick sister. It translates not only the psychic work of
search for meaning concerning the crises of this sister who does not speak
about it but also her desire to enter in relation with this sister who is
distant and who constitutes for her a broken mirror (26) which sends her back a strange image of
herself. Fidèle is convinced that her sick sister sees her as a bad sister. She
specifies “It hurts me too much. I know when she is in pain she needs us to
help her. But we do everything, her illness does not end. That's all that hurts
when I see her in pain like that. “Everything happens as if between the
brothers and sisters, it was not a question of games and exchanges with the
patient, but of a relationship aimed at the never-ending repair of the
vulnerability of the latter. This marks the difficulty Fidèle and her brothers
and sisters have in living themselves as “brother” of Angela.
Contribution of the
drawing
Between the interview and the drawing, a 5-minute
break was scheduled to allow the child and the researcher to recharge their
batteries and rest. This non-compulsory break was designed to make the meeting
less exhausting for the child and for the researcher. Fidèle wanted to take
this break during which she remained in the living room, without going out. The
interview would have been exhausting for Fidèle. It is also possible that she
took this break to better prepare the drawing or to better think about the
family and the people to draw.
Parents'
investment: The
drawing was done very quickly. The various members of the nuclear family were
simultaneously drawn, by order, without correction or improvement; the father
(Joseph), the mother (Agnes), the first child of the siblings (Corine), the
participant (Fidèle), her younger brother (Michel), her younger heart
(Laéticia), the younger sister suffering from SCD (Angela ) and the youngest of
the siblings (Junior). The table, placed in the center of the sheet, on which
is placed a bouquet of flowers is the last element drawn. This order of
appearance in the drawing provides information on the affective investment in
relationships with parents. With this drawing, Fidèle highlights her parents,
the importance she gives to her subjective relationships with her father and
mother. The mother-in-law (Emilie) is absent from the drawing. It is a
monogamous family that she drew. This absence may reflect possible family
conflicts that Fidèle witnesses within this polygamous family. In fact, it is
known that SCD often rekindles conflicts between co-wives who reject
responsibility for the onset of the disease [16].
Expressing
anger at the sick sister: Fidèle
says she drew her family members in the living room talking about the results
of the school year. From his drawing, Fidèle designates her father (Joseph) as
the happiest person. He's actually happy because, she says, all the kids did
well in school. Fidèle's younger brother (Michel) is named by the latter as the
least happy person in the drawing, "because he does not express his
emotions". In a social context where it is forbidden to enter into
conflict with one's parents this complaint formulated against her brother can
be understood as a displacement on this sister of the complaint against parents
who do not express not their experience of the disease to the children and
which do not allow them to express theirs to them. Fidèle manifests by this
anger her desire to see
- Her parents talk about SCD to children and with
children;
- Her siblings talk about SCD among themselves;
- Her sick sister talk to her and talk to her other
siblings about her illness experience.
The mother is considered the nicest person because she
takes good care of everyone, unlike the child with SCD (Angela), who is
considered the least nice person in the picture because. She expresses, in this
way, her anger at her sick sister, whom she designates as responsible for the
suffering of the family. Fidèle therefore thinks of himself as a victim of her
sister's illness.
Identification
with the father
If Fidèle had been asked to take the place of one
person in the drawing, she would have taken that of her father (Joseph) because
he is the decision-making center of the family. Fidèle thus manifests her
identification with the father and reflects her desire to possess, like her
father, power within the family. By identifying with her father, it is possible
that Fidèle wishes to have the power necessary to reconfigure the family bonds
and to bring the parents, the mother, to no longer affectively isolate the
non-sick children and by allowing the members of the family to speak about SCD
and their experiences with this disease and the sick child.
The
presence of Angela and Fidèle in the drawing
The sick child is
present in the picture despite the fact that it is seen as strange in the
interview. This strange child should, in principle and in accordance with the
pleasure principle, be excluded from the mental universe of Fidèle because it
constitutes for her a kind of broken mirror which gives her a bad image of
herself [26]. The presence of Angela in this drawing can reflect the Fidèle
desire to understand what is happening to this strange sister and the intensity
of the psychic work in connection with this sister and with her illness. She is
in fact a sister who, despite her strangeness, is very present in Fidèle on a
psychic level. The drawing highlights the effort she makes to make this sister
less strange, efforts that come up against the taboo of the disease, the
refusal of parents to allow family talking about this disease. The presence of
Fidèle in the drawing reflects her feeling of belonging to her family. All the
characters are similar, with a more noticeable gender difference in the head;
females have hair unlike males. All these people are drawn in sticks and do not
touch each other. They are roughly similar people, apart from the difference in
sex perceptible by the absence or presence of hair as mentioned above. This
similarity of cartoon characters may reflect Fidèle's recognition of the
suffering of other family members who, like her, cannot tell others what they
are going through regarding Angela's illness. It can also refer to Fidèle to
the alteration of the identification / differentiation mechanism with her
siblings. It is possible that Fidèle translates this into her difficulty in
thinking of her siblings as likely to live decently with Angela’s disease. No
person in the drawing is in physical contact with others. This can mean the
feeling of emotional isolation that Fidèle experiences within her family and
her recognition from that experienced by other members of her family. This lack
of contact can therefore provide information for Fidèle on the lack of
composure of her family group regarding her experience with the sick sister and
her illness. However, we are in a cultural context where the expression of
affection and support does not always translate into physical contact such as
touching, kissing and hugging, among others. What makes this interpretation,
like the fraternal and family relations very complex in the sub-Saharan African
context? In addition, Fidèle is on the same line as her parents. This can
provide information on her identification with the parents and translate the
parenting process at play for her concerning the care of her sick sister,
located at the bottom of the drawing, with a gaze directed upwards, as if to
request the presence and help too as much from her parents as from Fidèle and
her other siblings.
One of the results that provokes discussion is
the identification of Fidèle with her father. The father is the guarantor of
the family taboo concerning sickle cell disease. This identification highlights
the psychic transmission of the taboo to this girl by her parents. This psychic
transmission can be represented in a subject by projective identification with
the parent [27]; the subject therefore inherits narcissistic needs and has a
mission of narcissistic continuity and reparation concerning the parents. This
research shows how Fidèle, forced by her parents to fall under the taboo of
sickle cell disease, strives to break this transmission by asking for
recognition of her experience as well as that of her siblings by her parents in
connection with the disease of her sister. However, as the results show,
Fidèle, out of recognition of the suffering that her parents and siblings
experience in the face of her sister's illness, refuses to express her own to
them so as not to aggravate theirs. This recognition reinforces her feeling of
belonging to the family, therefore, can be thought of as a factor of resilience
in Fidèle. Fidèle's parentification regarding the care and protection of the
sick sister, the aggressive behavior against this sick sister and the feeling
of guilt that follows are potential factors of resilience as they make her
active with her sister, sick and hence of her illness. Activity, unlike
passivity, constitutes a factor of resilience in a subject when faced with a
traumatic event [28]. In addition, the treatment of Fidèle and her sick sister
by the traditional therapist can constitute in this girl a factor of resilience
in the face of SCD and the sorcerers appointed responsible for this disease.
This result highlights the relationships between resilience and culture which,
through the study of traditional care practices, constitute a new way of
examining resilience in subjects [29]. Public health policy should therefore
take account of anthropological and psychological specificities in the care of
people with SCD and in their psychological support as well as that of their
relatives. The integration of this data can help strengthen the resilience of
health care systems, patients and their families in the face of this traumatic
disease of sickle cell disease [30]. In addition, the chronicity of Angèla's
crises can be a factor of resilience in Fidèle. This chronicity is in fact
likely to generate in the latter a habituation to her crises which are
generally manifested by pain and anemia. This habituation would make these
crises, less strange for Fidèle and this, despite the absence of words, as well
in the latter as in her sick sister and her parents to tell about these crises
and to say about these crises in family and in outside the family. The
consideration of anthropological and psychological specificities in prevention
and in care in general remains the soft underbelly of public health policies in
sub-Saharan Africa in general and in Cameroon in particular; an environment in
which, however, populations show an addiction to their habits and customs and
from which any attempt to digress would be punished by the curse. Thus, despite
some progress marked in particular by the erection of health districts
following the 1992 reform and guided by
taking demographic, socio-cultural, economic and technical criteria into
account, this concern persists [31].
“Taking into account the social determinants of health is almost
non-existent” in Cameroon to the extent that health promotion remains focused
exclusively on the prevention of diseases and to health education, more often
than not, without socio-cultural roots [32].
This research presents results similar to those of other studies concerning the presence of the sickle cell taboo in African families. The absence of speech reinforces the young girl's sense of abandonment and her feeling of strangeness regarding her sick sister and her illness. This can pose a risk to her psychological health if it persists over time. Following other researches, this research shows the need for professionals to remain extremely sensitive to the way in which the experience of the disease is a part of the family psyche with a view to transforming it and making the family and siblings a resource for the child with SCD and his siblings. The establishment of a space of speech between the sick child, his siblings, his parents and the care professionals within the institutions can help to achieve this objective and to reduce the potentially harmful effect of the family taboo concerning SCD on the sick child, on his brothers and sisters and even on his parents because the negative pact can have a transient protective effect for the sick child, his parents and his brothers and sisters if he does not prolonged too long. However, it is necessary that the various people concerned by this space of speech understand the merits of it for each potential participant and agree to integrate it as a participant.