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Les besoins des parents confrontés aux soins palliatifs et au décès de leur enfant - étude exploratoire

par Van Pevenage, Claire ;Van Pevenage, Isabelle;Geuzaine, C.;Schell, M.;Lambotte, Isabelle ;Delvenne, Véronique
Référence Neuropsychiatrie de l'enfance et de l'adolescence, 61, 7-8, page (433-440)
Publication Publié, 2013-10

Article révisé par les pairs

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Résumé :

Within the context of palliative care, supporting the whole family is crucial both during the child's illness and after its death. This approach requires a consideration by the health care teams of the family needs and, among them, the parental needs. Objectives: Our purpose is to analyze in qualitative and retrospective terms the way in which the needs of the parents facing the death of their child have been met or not by the health care team (physicians, nursing staff, psychologists). We will try to highlight the factors that would either facilitate or impede the parental adjustment to the death of their child. Study design: Four mothers and two fathers of children suffering from metabolic and neurodegenerative diseases, that had been deceased for at least six months but less than two years, were met for a semi-directive interview based on medical needs (care to child), social, relational, psychological, cultural, spiritual or existential needs prior to and following the death of their child. An assessment of depression and anxiety was also performed (HADS, Hospital Anxiety and Depression Scale). Results: Families have highly variable needs that require great flexibility on the part of the health care team. Away from the death of their child (18months), half of the parents still have high HADS scores, without benefiting of grief counseling which is however much needed. Conclusion: At the end of this study and from clinical material and literature, we carried out a mapping so as to help caregivers in identifying among the parents who are facing the death of their child, any 'barrier' factors that may complicate their grief, as well as any 'resource' factors they can rely on in terms of following-up their grief. © 2013.