Repères psychologiques et développementaux chez le patient drépanocytaire

Richard, Marion; Mubiri, Marie-Armelle; Bioy, Antoine

doi:10.1016/j.douler.2014.10.006

Cited by 6 publications

(10 citation statements)

References 30 publications

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“…Sick children cope with repeated onsets of pain [3] which cause them to experience feelings of distress and loneliness among their siblings compounded by their difficulties to share this torment with their loved ones [26]. They also cope with their verbal abuse by some family members who sometimes describe them as "children of death" who ruin their families before dying [12].…”

Section: Emotional Rapprochement With the Spinal Cord Donormentioning

confidence: 99%

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The Psychological Impact of Sickle Cell Disease on the Sick Child's Family

Nsangou¹,

Scelles²

2020

Act Scie Paedia

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It is accepted that a supportive and containing family environment conducive to a therapeutic alliance being established in the best conditions is a necessary condition for improving the quality of life of the sick child and his family [1,2]. Few studies focus specifically on the experience of families including a child with sickle cell disease. However, it remains a common pathology characterized by physical suffering, repeated hospitalization, side effects from the treatment and even risk of mortality. This genetic disease is the most prevalent in the world, with about 500 million individuals carrying the sickle cell trait and 50 million living with the disease worldwide [3]. Originally spread over malaria-endemic areas such as sub-Saharan African countries,

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Section: Emotional Rapprochement With the Spinal Cord Donormentioning

confidence: 99%

“…They also cope with their verbal abuse by some family members who sometimes describe them as "children of death" who ruin their families before dying [12]. This family reality awakens in them an anguish of death and confronts them with deadly fantasies and an elusive fear [26].…”

Section: Emotional Rapprochement With the Spinal Cord Donormentioning

confidence: 99%

The Psychological Impact of Sickle Cell Disease on the Sick Child's Family

Nsangou¹,

Scelles²

2020

Act Scie Paedia

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“…Literature suggests that the psychosocial burden of sickle cell disease is immense, with profound effects on family structures and individual development (Njifon Nsangou & Scelles, 2021). Adolescents, navigating critical developmental milestones, may experience exacerbated stress when medical care becomes a dominant aspect of their daily lives (Richard, Mubiri, & Bioy, 2014). This study builds on these findings by focusing on the unique role of grandparents in the caregiving process, an area less documented in existing research.…”

Section: Introductionmentioning

confidence: 99%

The psychological experience of sickle cell disease in a Cameroonian adolescent living with her grandparents

Nsangou,

Mboe

2024

Nusant. J. Behav. and. Soc. Sci

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Sickle cell disease, the most widespread genetic disorder globally, is characterized by chronic and painful crises and high treatment costs, particularly in the Sub-Saharan African context where the disease is often associated with imminent death. This study aims to understand the experiences of an adolescent in Cameroon living with this disease and residing with her grandparents. Through in-depth interviews, we reveal how therapy non-compliance—particularly evident in medication delays—and the ambivalent behavior of her grandparents impact her disease management. The grandparents exhibit behaviors that are sometimes overprotective and at times aggressive, which not only affect how this adolescent understands and manages her condition but also hinder the process of subjectivation of her disease. These findings highlight the need to provide a space for grandparents to express their understanding of their granddaughter's illness and to assume their role in the care process. This study extends our understanding of family dynamics in managing sickle cell disease and demonstrates the importance of supporting grandparents as crucial resources in healthcare within this context.

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“…Néanmoins, leur espérance de vie reste réduite. À titre d'exemple, en France, elle est actuellement de 36 ans [8]. Le seul traitement curatif actuellement disponible est la greffe de moelle osseuse.…”

Section: Introductionunclassified

“…Elle confronte l'enfant à une perte de contrôle corporel et sensoriel. Au moment de la crise douloureuse, les angoisses sont massives et peuvent éveiller des angoisses de mort [8]. Par ailleurs, le fait de se sentir fatigué a un effet inhibiteur, la fatigue peut être vécue comme une dévalorisation, une marginalisation voire une discrimination par rapport aux activités des pairs (sport, voyages, activités scolaires) [10].…”

Section: Introductionunclassified

Étude du développement psychologique de l’enfant atteint d’une drépanocytose

Lambotte

Coster

Ferster³

et al. 2019

Neuropsychiatrie de l'Enfance et de l'Adolescence

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Objectif. -Étude du développement psychologique de huit enfants de 6-12 ans atteints de drépanocytose. Méthodologie. -Rencontre individuelle et familiale (parents, enfants). Évaluation affective, intellectuelle, du contexte médical, familial et social par des outils psychométriques (WISC-IV, MDI-C, AUQUEI), un entretien semi-directif et des média projectifs (dessin, modelage, CAT, CAT-S). Résultats. -La maladie semble globalement peu envahissante, les enfants évaluent avoir une bonne qualité de vie, exceptée une faible énergie. Deux enfants présentent toutefois une dépression avec de l'anxiété. Au niveau du développement psychologique, on observe des fonctions intellectuelles de bon niveau et un parcours scolaire sans particularité. Face à la question de la maladie, on observe des difficultés de communication chez l'enfant et sa famille et des émergences traumatiques chez les parents. L'enfant présente alors un niveau d'élaboration mentale inhibé (évitement) qui se différencie peu de celui de son entourage. Les aménagements psychiques dans le jeu relationnel sont de qualité mais les enfants déploient peu leur imaginaire (accrochage au réel). Ils présentent des angoisses de séparation-différentiation et manifestent un besoin d'étayage relationnel. Conclusion. -Malgré des difficultés d'appropriation subjective de la maladie et des difficultés d'autonomisation-individuation, les registres défensifs des enfants sont variés et opérants. Ceux-ci ainsi que leur créativité fluctuent en fonction des outils, ce qui amène les auteurs à souligner l'intérêt de varier les outils d'évaluation pour observer toutes les ressources de l'enfant face à sa maladie.

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Repères psychologiques et développementaux chez le patient drépanocytaire

Cited by 6 publications

References 30 publications

The Psychological Impact of Sickle Cell Disease on the Sick Child's Family

The Psychological Impact of Sickle Cell Disease on the Sick Child's Family

The psychological experience of sickle cell disease in a Cameroonian adolescent living with her grandparents

Étude du développement psychologique de l’enfant atteint d’une drépanocytose

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