REVISTA N° 21 | AÑO 2019 / 2
Autor: ALEXANDRESCU Adina
Idioma: Ingles
SECCIONES: ARTÍCULOS
Palabras claves: doble marginación - enfermedades crónicas - escucha familiar - identidad cultural - trabajo institucional
Resumen
Hospital-Hogar: de la experiencia somática a la integración en la comunidad – la reintegración socio-cultural después de 27 años de hospitalización
El trabajo institucional con familias cuyos hijos padecen enfermedades crónicas es un gran desafío tanto para el personal sanitario como para el personal de apoyo, incluidos los psicoterapeutas. Así que propongo un dispositivo de trabajo familiar en un hospital de enfermedades crónicas, en el departamento de inmunodeficiencia primaria, con enfermedades genéticas graves. Un tema especial del departamento es el trabajo con las familias romaníes, donde los matrimonios de consanguinidad a menudo causan inmunodeficiencia debido a la herencia genética.
Ilustraré un caso clínico de un joven de 28 años, todavía tratado en la sección de pediatría, que debido a su afiliación étnica y cultural (parte de una familia romaní) vive con su familia una doble marginación. El joven, que se encuentra en el límite entre la vida y la muerte y que sólo tiene un contacto limitado con el mundo exterior, se enfrenta a la angustia de la no aceptación y la exclusión, tanto por motivos de enfermedad como de origen étnico.
Palabras clave: trabajo institucional, enfermedades crónicas, escucha familiar, identidad cultural, doble marginación.
Résumé
L’Hôpital-Maison: de l’expérience somatique à l’intégration dans la communauté – la réintégration socioculturelle après 27 ans d’hospitalisation
Le travail institutionnel auprès des familles dont les enfants souffrent de maladies chroniques représente un grand défi pour les personnels de santé et de soutien, y compris les psychothérapeutes. Je propose donc un dispositif de travail familial dans un hôpital spécialisé dans les maladies chroniques, dans le service d’immunodéficience primaire, pour des maladies génétiques graves. Une particularité de ce département est le travail avec les familles roms, où les mariages consanguins causent souvent une immunodéficience due à l’héritage génétique.
J’illustrerai le cas clinique d’un jeune homme de 28 ans, toujours traité en pédiatrie, qui, en raison de son appartenance ethnique et culturelle (membre d’une famille rom) vit avec sa famille une double marginalisation. Cet homme de 28 ans, à la frontière entre la vie et la mort et n’ayant qu’un contact limité avec le monde extérieur, est confronté à l’angoisse de la non-acceptation et de l’exclusion, en raison, à la fois, de la maladie et dethnicité.
Mots-clés: travail institutionnel, maladie chronique, écoute familiale, identité culturelle, double marginalisation.
Summary
The Hospital-Home: from the somatic experience to integration in the community, socio-cultural reintegration after 27 years of hospitalisation
Institutional work with families whose children suffer from chronic illnesses represents a great challenge for both healthcare and support staff, including psychotherapists. I therefore put forward an action plan for family work for use in the primary immunodeficiency department of a chronic diseases hospital for patients suffering from serious genetic disorders. One of the particular features of this department is its work with the Roma community, in which consanguineous marriages often lead to genetic immunodeficiency. I describe the clinical case of a young man, aged 28 years, who is still being treated in the pediatric department, and who, because of his ethnic and cultural heritage (as a member of a Roma family), along with his family has to live with double marginalisation. This 28 year old man, who is on the brink between life and death and has only limited contact with the outside world, is faced with the anguish of non-acceptance and of exclusion, because of the simultaneous presentation of his illness and ethnicity.
Key-words: institutional work, chronic illness, family listening, cultural identity, double marginalisation.
ARTÍCULO
Working with families whose children have chronic illnesses is a great challenge for both health care professionals and psychotherapists. Six years ago, I started a volunteer program in Bucharest at a pediatric hospital known for its chronic and critical cases. The program takes place weekly, for five hours per week, at the primary immunodeficiency ward. Due to the prolonged nature of the disease, I have been working with the same families all these years, with a few new families receiving this diagnosis and requiring chronic inpatient care in recent years. Very few of these families left the hospital indefinitely, unfortunately except for cases of death.
My job is to work with families who are experiencing dramatic chronic illness situations. These situations involve both a separation within the family and a separation from the community they are part of. During these years I have identified the importance of cultural identity and how strongly these families are affected by its loss and the loss of direct connection with the community. After many years of hospitalization, the illness and context around it become a collective unconscious way for the patient and his family to keep a sense of belonging adapted to this new way of living. This means, symbolically, that the disease becomes important for the patient and his family to be able to have a new sense of family, cultural identity, and of belonging, all related to the hospital environment and the other patients and their families.
The beginning of therapy
“Mihai” (pseudonym) was already a patient when I started volunteering at the Pediatric Immunology Department six years ago. He is a young Gipsy, 28 years of age, and is diagnosed with primary immunodeficiency. I have been seeing Mihai and his mother twice a month for 6 years, in a private room of the Pediatric Hospital where he was hospitalized almost permanently due to his illness and the various complications that appeared. Mihai’s weight is the main reason he is being treated by pediatricians at his age; until recently he weighed 21 kg. When he turned 18, there was an effort made to move him to an adult care unit, which was very traumatic for him and his mother, so his pediatricians insisted he continues treatment with them for an additional period of time.
Mihai is the only child of a Gipsy family from a poor region of Romania, the only male descendant of his extended family. His mother described him as the most spoiled in the family and everyone tries to help him and make him feel better. The father is a singer of traditional Gipsy music (he plays the accordion at weddings, baptisms, or on the streets of the big cities in Europe), while his mother has been a housewife since Mihai was born. It is fair to say that for Mihai and his mother the hospital has been home since he was born.
When I met Mihai he was 22 years old, had the appearance of a 6-year-old and the speaking skills of an 8-9 year old child. Initially he was very shy and did not talk at all. He always wore a red hat to hide behind, which I later found out he actually wore to hide white patches he had on his face because of the disease. His mother always described the whole situation as very tough, she did not make eye contact, and she would always gaze at some point above my head, no matter what she was doing, talking or just glaring. Our interactions started with me becoming familiar with their medical history. His mother had a very coherent way of explaining everything and used precise medical terms. Even though she only continued school through 8th grade, Mihai’s mother was very familiar with the terminology.
In the first sessions, I found out that the mother was dressing Mihai, prepared his meals and drinks, and at the time he only used his own hands to eat. Mihai had never prepared a single drink or snack at that point. It often came to my mind that he will not make it alone when his parents will no longer be alive. He and his family most likely couldn’t even imagine this version of reality, I think they believed that Mihai will be the first in the family to pass away.
The only inheritor to this family is seriously ill, the heir who can carry the family name on. Mihai did not go to school, even his doctors couldn’t perceive the need for school in Mihai’s case, meaning not even they could perceive the idea of a future for him. The beginning of therapy brings about the possibility of thinking both the present and the future for the first time (the present and the future not only from the perspective of the disease).
This stage was characterized by a void of thought, a white thinking, where there is no future, no body, no symbolizing skills, no mentalization (Marty, 1980), everything is symbiotic especially the mother and child connection, in a time and space that has no boundaries. Mum cannot concretely perceive her child’s vitality and therefore does not give him tasks or anything to do, does not help him become responsible, the only way she can make sure the boy is alive is by infantilizing him, not allowing time to progress, as this would only bring the inevitable.
Middle stage
Mihai’s situation severely worsened in October 2016 when he contracted an inhospital viral infection and suffered a complication that spread to his lungs. He was then moved to another hospital and for two months I did not see him at all. I kept in touch with his doctors, who told me he’s getting worse and his chances of recovery after this infection are minimal. One day the good news came that Mihai was doing better. Later, I was called by his mother and informed that they will return to the hospital where I am based and that they want to begin therapy again. I found Mihai to be very weak, I often thought maybe we were approaching our last meeting, he had difficulty speaking and he was very scared. The doctors came up with the suggestion of installing a subcutaneous port for more effective management of treatments. Mihai refused this procedure, motivating the refusal by fear of anesthesia and by the fact that this should take place in an adult hospital. There were a few meetings in which this was the main subject of discussion, the fact that he was not ready to stay for a few days in an adult hospital and treated as an adult, and moreover to be deprived of his mother. After long talks, he accepted the subcutaneous port and was moved for a few days to a nearby adult hospital. The next meeting he was quiet and we resumed past discussions about the friends he spends time with at home and the fact that his mother is very excited that he is treated by youngsters his age as one of their own.
This success, with Mihai on his own at an adult hospital, brought along a new stage in therapy, the stage in which the boy started to develop. After this episode, due to the increased effectiveness of the subcutaneous treatment, Mihai’s condition improved a lot, his eating started to improve, and therefore the treatments continued to prove even more efficient.
Two years ago, starting in the spring, the idea of Mihai’s transfer to an adult ward specialized in immunodeficiencies emerged in therapy. This possibility was vehemently denied by him, but especially by his mother’s reasons which she considered to be medical. Mihai’s separation of his mother was unthinkable, there was this symbiotic relationship between them, as if a separation of any kind equals death.
Mihai’s mother often said she felt like she’s was being kicked out of her own house, she was symbolizing the children’s hospital as home.
The family was trapped in a paranoid position, in which everyone who discusses the transfer to the adult section of the boy (26 years old) becomes hostile and potentially dangerous. Then a real war begins between the mother and the medical staff, in which the mother defends her right to remain in treatment at the pediatric hospital.
Cultural identity
In Gipsy communities, people live in small groups called Satra (a term that does not have a translation in other languages, similar to a tribe), a nomination specific to the nomadic Gipsy groups. The Children’s Hospital is, therefore, their “satra”. The Gipsy people are known to be very loyal to their family and their tribe, so most of the marriages are consanguineous, so as to not leave the community and to stay in the family. This is why the separation from the Satra that kept Mihai alive for 26 years (the hospital) is unbearable. Traditionally, Gipsy families are extremely symbiotic, with cultural identity being very important, which is quite visible in this case.
In Romania, Gipsy communities are found in poor villages at the periphery of big cities, and they no longer operate as nomads except through the characteristics of their crafts. Although marginalized, the Gipsy are highly valued for their skills and used by the Romanian population. Most men have jobs that have this nomadic character (musicians, builders, cobblers, metalsmiths, jewelry craftsmen, etc. that go to big cities to sell their goods or services). Women, on the other hand, live in their native villages, take care of their homes and children, many children in most cases, are recognized to keep their homes clean and appreciated as good housewives.
The Gipsy family structure has a very traditional character, couples rarely divorce, everything rotates around everyday life and the household. School education is traditionally of little importance, trades are passed down from father to son, even musical instruments are learned “by ear”, although recently Gipsy families have begun to encourage their children to attend musical studies.
Mihai does not seem to be able to inherit any of his family talents, he cannot be a craftsman, he cannot be a musician, he cannot even go to school. He is even blamed for the fact that his family could not have other children, due to the poor condition of his health. The fact that his mother lived in complete symbiosis with him for so many years led to the fact that there was no more room in this family for more children.
Mihai has vitiligo blotches on his face (patches of skin that lack color). These spots appear to symbolically represent a mixture of his Gipsy identity (dark skin) and the obscure identity of his long-term hospitalizations (white, porcelain skin), as none of the doctors who treated Mihai are part of the Rom culture (Bucci, 1997).
Separation is experienced by the mother and by the young man as if something is ripped away, which is quite traumatic by itself, but moreover in this case there is the notion that he has two choices, either to live, to start growing both physically and mentally, within the capacity of symbolization, or to die (Andre-Fustier, 2011). Mihai’s relocation to the adult ward represents his hope of becoming an adult. Until the amazing improvement in his health, no one in his family thought Mihai could ever reach adult age. At birth, it was predicted that he would die, like in a gypsy curse, but a curse was given by the medical system. The only boy of the family is to be born with this serious health problem, spend all his life in the hospital, never get married, and have no children of his own. This situation is perceived by the parents as an extremely real gypsy curse. Mihai’s mother has learned many medical terms in order to be able to decode this curse.
Mihai has grown 27 cm in the past two years and gained 20 kg in body mass. His appearance is that of a 15-16 year old child now. These are some amazing signs of progress from a medical point of view.
The certainty of the transfer brought a lot of anger to the therapy sessions. Anger toward the medical staff that does not act according to Mihai’s best interest. When I mentioned this feeling, Mihai’s mother said she feels kicked out of her house because this hospital (the pediatric hospital) has been their home for the past 25-26 years, there were always together, spent holidays and birthdays here, and this is even where they have learned that some colleagues lost the fight against the disease. Mihai has become more and more silent in therapy sessions, and his mother has become more vocal, as if taking his defense, and would argue that he is still a child who has to have the attention of a children’s doctor, in order to remain a child. The mother felt anger, the rage that she was excluded from the hospital, just as she is excluded from the Gipsy Satra. It was as if she was living a double marginalization and a double exclusion, first of all, from the Gipsy Satra (the Gipsy community) because she has a sick child whom she has lived with for 28 years in hospitals, and second of all, from the hospital which once felt like a “home” because of what she perceives as the “injustice” of Mihai becoming an adult. This separation was experienced as the destruction of this symbiotic link as if Mihai was being thrown away. This link kept the child and mother alive for 28 years, there is a link of emotional dependence, the addiction is so great that separation means destruction. Mihai’s father travels to keep himself alive. But it seems that the father is the only one who can cooperate with the fact that Mihai is so ill, raising the hypothesis that maybe his connection to the community is the difference.
During the discussions about moving to the adult department, the relationship between Mother and Mihai, on the one hand, and doctors on the other hand, began to be more and more difficult. There were many disputes at that time (as in any separation, as a symbolic adolescence).
The relocation to the adult ward means Mihai’s first opportunity to became an adult, an option no one thought of until the beginning of the therapy. In the initial discussions with the medical team, all the prognoses indicated a life expectancy of 5 years. This was six years ago. Mihai has defied this limited hope of life, and now his doctors say he can lead a life close to normality, in which life expectancy is no longer a limiting factor. This is thanks to his progress, but also due to medical progress in the last several years.
The beginning of the therapy brought about the possibility of starting the mentalization process, brought the third person, the third person who has the ability to perceive the future, the possibility of becoming an adult.
Therapy also means a long process of mediation between the corporeal and the social, to think for the first time of Mihai’s life and how he is outside his long-term hospitalizations and his illness. Through the therapy, a narcissistic reinvestment was attempted, both the mother and the boy regained confidence in doctors and medicines when Mihai recovered after the somatic fall in 2016. For the first time, they realized that they don’t have to be physically together, next to each other, for all of the members of the family to continue to exist.
The end
Lately, Mihai’s life has changed a lot, he has made a group of friends that he has known since he was little, and who recently started to take him to city outings, parties, meals. These boys are Gipsy just like him, they are about his age, and they are traditional singers at weddings and baptisms. They protect him, care for him and always call him, tell him jokes, and make him laugh.
Mihai talks kindly to his friends, boys, who are passionate about cars and computer games. They talk about girls, some of them have wives and children of their own. It is as if these friends are Mihai’s new Satra, as was the hospital and medical staff so far, but the young group expressed the nomadic character, through mobility, and in general the cultural identity that Mihai needs so much.
Mihai continues with homeschooling classes. When he is at home he goes twice a week to a teacher’s home to take individual lessons in Mathematics and Romanian Language.
Now he can speak for the first time about other people in therapy, not only about his illness and suffering but about his friends, about his concerns about how he is viewed by other people, about still being very weak and having vitiligo (the patches on his face). He recently found a special cream on the internet that covers these spots (a kind of concealer), which symbolically covers the white patches and he is able to maintain his Gipsy appearance.
His medical condition has improved considerably, he is now undergoing treatment with subcutaneous immunoglobulins, which means that he is given the infusion alone, by himself, lasting about 3-4 hours a week. Although initially, he was very upset when he heard about this opportunity, to “move home” and refused, after a while, he renegotiated with the doctors and agreed to do his treatment alone. He recounts that when it is the day of the week when he is given the infusion, his parents “look for a job in the city” and leave home to avoid seeing the procedure. This mode of administration allows him to stay home, he comes to the hospital about once a month now, for prescription renewals and therapy.
Mihai now has the appearance of a teenager. For him, gaining autonomy meant entering adolescence.
Last year, in February, an idea in therapy appeared, to learn how to drive a car and to take the driver’s license exam. It was for the first time that the idea of the future was present, a plan for the future.
He participated in driving school and after several attempts (he was always rejected in the legislative trial) he received approval to drive the car.
His very happy parents immediately bought him a personal car. He used all his time at home to drive his friends around in his car.
This year, in April, he had an extremely serious car accident, in which he had little time to lose his life, he was driving at an illegal speed and he lost control of the car.
The family then “separated” into two, his parents saying that they would not allow him to drive anymore, and them also feeling very guilty and saying that they really wanted him to be able to drive again, because the act of driving the car is his biggest, but also his only success. Mihai could take his defense very vehemently.
Mihai’s ego is still fragile, he does not have the capacity to protect himself, as he still relies on the Gypsy community (his friends, parents, police officers, etc.). It is still necessary for him to be aware that the danger of death exists also without the manifest disease, and to be aware of the social dangers he faces (the car accident occurred when he was racing another friend through the village).
The guilt Mihai experienced after the accident was very great, almost overwhelming (for the first time in 6 years of psychotherapy I saw him crying). The guilt came from the danger he exposed himself to, from destroying the car, but it may also be a pang of survivor’s guilt, compared to the immunodeficient colleagues (his other family), the guilt of healing, the guilt of living his life, like a normal young man.
Conclusions
Six years ago, at the beginning of the therapy, the family of Rom origin seemed to face a painful future, that of losing their only child, their son.
The medical advances and the great desire to live, are making this young man live beyond everyone’s expectations. If from a medical point of view he has made great progress, the question remains how he can reintegrate and live socially and culturally, a notion that has not existed in the history of this family for 6 years.
The struggle with his somatic afflictions seems to be under control, but his individual struggle remains to have a life in the community, a community that seems willing to take him back, after 27 years of hospitalization.
References
Bucci, W. (1997). Symptoms and symbols: A multiple code theory of Somatization.
Psychoanalytic Inquiry, 17, 2: 151-172. DOI: 10.1080/07351699709534117.
Andre-Fustier, F. ( 2011). L’enfant insuffisamment bon. Paris: Dunod.
Marty, P. (1980). L’ordre psychosomatique: les mouvements individuals de vie et de mort. Paris: Payot.
Resumen
El destino del trauma en el grupo familiar en el momento de la aparición de una patología cancerosa en los niños
Dado que estamos interesados en la problemática de los vínculos entre la psiquis y lo somático, siempre se ha planteado la cuestión del enigma del “desove” por parte del cuerpo. Pensar en el cuerpo y en su dolor en el niño con una patología cancerosa non parece un cruce de estos dos espacios porque el pronóstico vital está comprometido. Y conlleva trastornos emocionales intensos, que requieren un apoyo específico, en particular el cuidado del grupo que permite la reanudación de las fuerzas instintivas de la vida dentro de la familia.
Palabras clave: problemas, enlaces, patología del cáncer, apoyo, familia.
Résumé
Les destins des traumatismes dans le groupe familial lors de la survenue d’une pathologie grave chez l’enfant
Depuis que l’on s’intéresse à la problématique des liens entre le psychisme et le somatique, la question de l’énigme du frayage par la voie corporelle s’est de tout temps posée. Penser le corps et sa douleur chez l’enfant porteur d’une pathologie cancéreuse se situe, nous semble-t-il, au croisement de ces deux espaces car le pronostic vital est engagé et entraîne des bouleversements affectifs intenses. Ceux-ci nécessitent un accompagnement spécifique, notamment la prise en charge par le groupe qui permet la reprise des forces pulsionnelles de vie à l’intérieur de la famille.
Mots-clés: problématiques, liens, pathologie cancéreuse, accompagnement, famille.
Summary
The outcome of trauma in the family group at the time of the appearance of a child’s severe illness
Ever since there has been an interest in the issue of links between the psyche and the soma, the enigma of “spawning” via the body has been under continual question. Thinking about the body and where bodily pain in the child with a cancerous pathology takes place, seems to us be an intersection between these two spaces because the vital prognosis is involved and entails intense emotional upheaval. These require specific support, in particular by the group taking charge, which allows the recovery of instinctual life forces within the family.
Keywords: issues, links, cancerous pathology, support, family.
ARTÍCULO
La survenue d’une maladie grave chez l’enfant engage son pronostic vital et entraîne des bouleversements majeurs des liens intra-familiaux et, en premier lieu, dans le couple, mais aussi chez l’enfant en traitement et dans sa fratrie. Il s’agit d’une pathologie à pronostic létal, même si, à l’heure actuelle, un nombre non négligeable d’enfants peuvent être considérés en rémission définitive à après cinq années sans rechute. Pour les parents, l’annonce du diagnostic a pour conséquence une sidération de la pensée et un bouleversement de la temporalité qui est en soi traumatique (Burloux, 2004) et qui suscite une fantasmatique ou l’enfant est donné pour mort (Brun, 1989) dans la pensée maternelle. Ce réel de la mort va entraîner, de manière inconsciente, une attaque contre les liens de pensée qui procède de la sidération psychique, elle-même causée par la charge d’angoisse massive et brutale qui survient.
La prise en charge dans un service spécialisé d’oncopédiatrie va se déployer dans la durée: plus de cinq semaines d’hospitalisation après l’annonce du diagnostic, puis retour au domicile et, à un rythme régulier à raison d’une fois par semaine, un traitement en hôpital de jour.
L’on se doit de préciser que toute procédure de traitement chimiothérapique nécessite d’être inclus dans un protocole qui codifie très précisément les doses de produit anticancéreux à délivrer, ceux-ci obéissant à des essais scientifiquement validés, selon les différentes formes de leucémie.
Les processus familiaux de déni et d’adhésivité au savoir médical
L’état dépressif provoqué par le cancer est souvent vécu comme une terreur indicible, l’enfant se repliant dans une position narcissique archaïque, sorte de retrait autistique qui tente de le protéger d’un morcellement interne, d’un démantèlement psychique. Il se retranche dans le silence qui lui sert de “peau protectrice”, enveloppe l’extrayant de l’angoisse du destin. Se met en place un “déni” radical de la réalité qui est d’une autre nature que le déni habituel, ou le désaveu, tel que Freud l’a théorisé. Chez les parents, il s’agit plutôt d’une impossibilité à reconnaître ce que serait la mort possible de l’enfant (Forest, 1998). Cet “impensable”, cette impossibilité de percevoir un signifiant de mort, ont pour conséquence un brusque gel des émotions, une évacuation des affects avant même qu’ils ne soient formés à partir des représentations, elles-mêmes porteuses d’horreur. C’est ce que Joyce McDougall (1978) appelle la “désaffectation” et qui a pour corollaire une pétrification de la pensée. Cette automutilation de la psyché a pour conséquence un démantèlement du système sensori-percepteur et un accrochage à l’intellect désaffecté. Cette adhésivité au médical procède d’un processus d’idéalisation. Si un échec du traitement surgit, comme une rechute, ce qui a été idéalisé par les parents, notamment le pouvoir médical, peut devenir objet persécuteur, voire objet de pulsions haineuses, et aboutir à des difficultés de prise en charge. Mais l’accrochage au médical peut aussi être compris comme gel de pensée. Surtout ne pas réfléchir car, sinon, on tombe dans le vide. C’est ainsi qu’un nombre non négligeable de familles s’accrochent sans recul aucun à telle approche, tel traitement miracle, telle recette qui protège du gouffre mortel (Ferenczi, 2006). Dans cet épuisant aller et retour émotionnel, il est très important de faire en sorte que l’enfant malade puisse garder un minimum d’espace transitionnel dans le “corps familial”. Il s’agit ici d’une atteinte du groupe famille dans son ensemble (Decherf, 2003), et les prises en charge individuelles sont très difficiles à asseoir tant au niveau du cadre qu’à celui de la demande, la famille se protégeant dans le non-dit.
Prise en charge par le groupe
L’approche groupale dans cette situation de bouleversements émotionnels majeurs prend ici toute sa pertinence. La mise en place de groupes de rencontre d’enfants, de parents ou de fratries permet aux participants d’évoquer ensemble ce qui est vécu et, ainsi, de ressentir que, face à une réalité traumatique, les autres procèdent par des modes d’adaptation similaires ou différents. Un jeu d’identifications réciproques s’opère, favorisant un processus d’étayage par le cadre groupal luimême où des vécus peuvent s’échanger. S’il y a gel des affects, ceux-ci peuvent être exprimés dans le groupe. Ainsi se trouve favorisée la reconstruction d’une enveloppe contenante (Anzieu, 1985), qui joue ici le rôle “d’appareil à penser les pensées”, permettant aux vécus individuels d’être plus tolérables et moins mortifères (Bion, 1962). Le groupe agit ainsi comme construction d’un espace transitionnel, au sens de Winnicott (1971), en permettant le “décollage” émotionnel que son cadre même favorise et, par la réactivation des affects, une reprise de l’expression et des sentiments.
Le cadre groupal favorise aussi les forces pulsionnelles de vie à l’intérieur de la famille. Les processus de “groupe de rencontre” de frères et sœurs d’enfants atteints de cancer permettent de faire émerger des demandes de prise en charge thérapeutique individuelles ou familiales qui, sans celui-ci, n’auraient pas pu se formuler (Bass, Trocmé, Leverger, 2005).
Le temps de la guérison et le choix du groupe comme cadre contenant
La réalité du cancer donne prise à la survenue de fantasmes de mise à mort et de dette. Ces fantasmes, toujours prêts à surgir, peuvent envahir en silence l’espace corporel et imaginaire de l’enfant et de sa famille. Ainsi en est-il du temps de la guérison, après l’annonce de la rémission de la maladie. Celle-ci se divise en deux temporalités, bien souvent dissociées, dont l’une peut aller sans l’autre. La guérison clinique, somatique, n’est pas du même ordre que la guérison psychique, même si elles peuvent se renforcer ou bien s’exclure. Cela oblige à opérer un intense travail de fusion et de séparation. Le corps médical et le personnel soignant sont porteurs d’images de toute-puissance, elle-même vecteur de vie et de mort. Lorsque surgit l’annonce de la guérison, celle-ci peut être vécue comme un abandon. La solitude est difficile à accepter, sans l’étayage représenté par le corps médical. Il est nécessaire alors, pour toute la famille, de recréer une peau psychique, un espace intérieur qui ne soit plus celui de l’espace hospitalier et un espace transitionnel d’échange avec le monde externe qui permette aussi son intériorisation. Lorsque le danger réel a disparu, quand la guérison se trouve confirmée par les instances médicales, il faut de nouveau pouvoir anticiper et rêver son enfant comme porteur de vie et non de mort. Le cancer ne focalise plus toute la dimension énergétique et le travail de grandir doit reprendre, ce qui nécessite un processus de séparation et de symbolisation. La tentation du silence est alors grande pour l’enfant et pour sa famille, notamment en faisant l’impasse sur cette reprise psychique d’un corps à habiter, d’un espace interne à retrouver. La psychanalyste Brun (1989) pointe la nécessité dans laquelle se trouvent certains d’avoir un lieu où ces mots-là puissent être recevables, ou l’autre soit mis en position de “veilleur”, à la fois facilitateur de ces représentations infanticides, si angoissantes, et garant de leur silence. C’est comme si l’on disait: “Pour que je vive, l’enfant malade en moi doit mourir.”. Quant à la mère, il s’agit de l’aider à délivrer son enfant d’une place impossible, celle de “revenant”. L’enfant réel en voie de guérison doit se guérir d’un lien indestructible noué avec la mère. Elle peut l’y aider en se recentrant sur l’enfant qui doit mourir en elle. Taire ou parler du cancer sans s’y identifier suppose un long chemin jusqu’à pouvoir l’oublier.
Ce processus de guérison s’impose aussi aux autres membres du corps familial : père, frères et sœurs, d’où l’importance de la mise en place d’un cadre groupal de prise en charge permettant de se délivrer de la violence primaire des affects pour laisser revenir des ressentis de tendresse, avec l’ambivalence des liens qui peut se reconnaître (Jaitin, 2018).
On devine ici combien la parole peut être risquée et combien elle nécessite des circonstances propices.
C’est pourquoi nous avons publié une recherche, en collaboration avec Nadine Trocmé et Guy Leverger, intitulée Réflexions concernant un groupe de fratries d’enfants malades dans un service d’oncologie pédiatrique (2005). Ce groupe a été créé car nous avions de nombreuses fois pu remarquer l’attitude silencieuse et potentiellement depressiogène des frères et sœurs accompagnant les parents lors des consultations à l’hôpital de jour pour le suivi d’une leucémie pédiatrique d’un ou d’un cadet(te) ou aîné(e) de la famille. C’est la raison pour laquelle la présence de deux psychologues formés à la pratique de l’inconscient nous a paru opportune. Les réunions ont eu lieu à un rythme mensuel pour une durée de trois années. Plus de vingt rencontres ont eu lieu et plus de trente enfants de 6 à 13 ans y ont participé. Le vécu par la fratrie des moments importants de la maladie génère des sentiments ambivalents emprunts parfois de grandes violences. Les fratries évoquaient souvent leur grande solitude car, dès la première hospitalisation de l’enfant malade, le ou les frères et sœurs se retrouvaient soudain seul(s) à la maison, les parents étant le plus souvent retenus à l’hôpital pour accompagner leur enfant en traitement et la fratrie se trouvaient ainsi délaissée. Un des participants au groupe a décrit qu’il s’était rendu compte de la gravité de la maladie de son frère lorsqu’il a aperçu un jour son père pleurer (Lavallée, 1999). Une autre a pris conscience de la gravité de la maladie de sa sœur parce que ses parents ne se préoccupaient plus de ses résultats scolaires, alors qu’avant ceux-ci y étaient très attentifs. Des situations de maltraitance affective ont pu se verbaliser dans ce groupe. Ainsi, le frère aîné d’un des participants du groupe avait pris l’habitude d’accuser systématiquement son frère cadet, dès lors que les parents lui exprimaient un reproche concernant son comportement. Les parents prenaient dès lors fait et cause pour l’aîné et punissaient le cadet, accentuant chez celui-ci un fort sentiment d’injustice. Il a pu dans le groupe exprimer les sentiments ambivalents de violence et de colère qui l’habitait, jusqu’à souhaiter la disparition de son frère aîné, espérant ainsi mettre fin au malêtre qui le rongeait suite à la maltraitance répétitive qu’il subissait. Une des participantes du groupe a eu à son égard une attitude thérapeutique en lui disant: “Mais tu ne vas pas continuer à te laisser traiter ainsi”. Il a soudain pris conscience qu’il devait en parler à ses parents. Jusque-là, il avait conscience de leur souffrance, mais le gel émotionnel était à l’œuvre. Rien ne se parlait dans cette famille et notamment de l’angoisse de mort dans le réel. Nous avons pu aussi noter l’expression de solitude, de ressentis abandonniques, de grand désarroi et d’angoisse dans toutes ses familles. Ce groupe a eu des effets significatifs thérapeutiques tant sur le plan individuel que familial, puisque la dynamique de ces rencontres a permis l’expression d’aide dans la famille elle-même, un nombre significatif de parents nous ayant sollicité pour des demandes de thérapie familiale.
Ce groupe expérimental a démontré, s’il en était besoin, l’impérieuse nécessité de l’approche groupale pour la prise en charge thérapeutique de l’enfant porteur de cancer et de sa famille. L’annonce du diagnostic de cette pathologie à risque létal est un traumatisme majeur car il ne permet plus de se projeter dans le futur et condamne les parents à essayer de trouver un lien causal à la survenue de cette maladie. Or, en l’état actuel des connaissances, il n’y a pas de liens prouvant scientifiquement le pourquoi de la survenue du cancer chez l’enfant, et, faute de réponses fiables, la famille a besoin de trouver une origine à la survenue de cette catastrophe. Elle éprouve le besoin impérieux de comprendre ce qui, pour eux, a été un dysfonctionnement intrafamilial ayant contribué à la survenue de cette pathologie.
Il arrive que certains parents soient peu présents. Ils ont peut-être du mal à venir à l’hôpital à cause de l’éloignement ou parce qu’ils ne possèdent pas de voiture. Il peut s’agir aussi de fragilité professionnelle ou psychologique. Certains éprouvent un sentiment d’impuissance à aider leur enfant ou pensent que leur présence est inutile. D’autres expriment ainsi leur pessimisme pour l’avenir (pourquoi risquer de perdre son travail, de fragiliser le couple, de négliger la fratrie, de faire beaucoup d’efforts ou de sacrifices si leur enfant doit mourir?).
La trop faible présence des parents peut également exprimer de l’immaturité et de l’irresponsabilité (ils ne ressentent pas les besoins de l’enfant et de ses attentes envers eux, ou agissent une négligence proche de la maltraitance). Quand les parents risquent de mettre en danger l’enfant, directement ou indirectement (leur absence, par exemple, étant susceptible de provoquer des troubles du comportement gênant gravement le traitement), le juge pour enfants peut les soulager, le temps nécessaire, de leurs responsabilités parentales. Il est souhaitable, plutôt que de porter sur eux un jugement moral, d’essayer de chercher à comprendre les causes possibles de leurs souffrances et de tenter d’y trouver une solution, ou au moins un compromis acceptable par les parents, l’enfant malade et les exigences du traitement.
Il importe de pouvoir expliquer à l’enfant ces compromis ou, s’ils n’arrivent pas à changer, de lui faire suffisamment comprendre et accepter l’attitude ses parents et ce bien qu’il puisse en souffrir. L’absence incompréhensible de ses parents peut être pour lui cause de détresse psychologique, parfois durable, qui peut engendrer de la non-compliance ou de l’opposition au traitement (Forest, 2019). Non-compliance qui peut être aussi l’expression de la réticence des parents eux-mêmes à ces soins.
L’épreuve du cancer peut entraîner une crise conjugale ou des difficultés relationnelles parents/enfants. Les parents peuvent trouver l’enfant toujours en danger et fragile et, dès lors, le surprotéger, se sentir responsables de sa maladie et de ses éventuelles séquelles et s’en culpabiliser. L’enfant, de son côté, en veut à ses parents de ne pas l’avoir suffisamment aidé ou de n’avoir pas empêché la survenue de la maladie ou trouve qu’ils n’ont pas été “à la hauteur” et perd confiance en eux. Mais l’épreuve peut avoir des effets positifs: parents et enfants ont traversé ensemble cette période difficile qui a contribué à tisser des liens beaucoup plus fort et plus riches qu’ils ne l’auraient fait en temps normal. De même, la fratrie peut se sentir délaissée, désinvestie ou, au contraire, être investie excessivement par les parents de tous les espoirs qu’ils avaient mis auparavant sur le frère ou la sœur malade.
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