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

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.ObjectivesOur 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 designFour 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).ResultsFamilies have highly variable needs that require great flexibility on the part of the health care team. Away from the death of their child (18 months), half of the parents still have high HADS scores, without benefiting of grief counseling which is however much needed.ConclusionAt 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.     

Exposition d’une cohorte de nouveau-nés à une tuberculose bacillifère dans un service de néonatalogie

IntroductionA nursery nurse that was working in the neonatology service had been diagnosed with tuberculosis. As a consequence, the newborn infants were in danger of a possible contamination during a 4-month period.MethodologyOne hundred and thirty kids that had been in touch with the nurse were given attention. Prophylactic treatment for three months with isoniazid and rifampicin has been proposed to all families. Each of them was screened with a tuberculin sensitivity test and was given chest radiography initially and after three months.ResultsNone of the children was initially suspected for tuberculosis. Among the chest radiographies, 97.6% were normal and all the intradermal tuberculin were either negative or in the norm following a vaccination by the Bacillus Calmette-Guerin. In most cases, the treatment tolerance was high.ConclusionA 4-year-long surveillance ensured that no infant was infected. This procedure has established that the risk of transmission by a nurse is low, should it be for newborn babies, as long as guidelines are strictly adhered to.     

R��fl��chir, c��est d��j�� prendre une d��cision: Le processus d��cisionnel des p��diatres face �� une situation de fin de vie

OBJECTIVES

To assess the end-of-life decision-making process for children and the significance given by paediatricians to the parents’ opinion versus the child’s opinion in such a situation.

METHODS

A clinical vignette describing a teenager reporting to the emergency department with severe breathing difficulties, a health status that was already compromised by a neurodegenerative disease and a limited life expectancy was used. A five-section questionnaire was used to assess the paediatricians’ decision-making process and to determine the information that they found to be useful.

RESULTS

In all, 26 physicians participated. Ten (39%) were residents and 16 (61%) were directors. Most respondents had participated in end-of-life decision-making for a child before, the median being higher with directors than with residents (four versus one; P=0.025, Mann-Whitney U test). Initially, after reading the clinical vignette and before gathering more information, 20 respondents (74%) said that they would have intubated the child. At the time of the final decision, after gathering more information, 15 respondents (56%) said that they would have intubated the patient. The factors considered to be most significant to the final decision were: the parents’ opinion, the child’s opinion, the mother’s opinion about basic functioning at home, the physical examination after 1 h of treatment, and the value of arterial gas after 1 h of treatment. ‘Nonintubators’ considered the child’s opinion to be more important than ‘intubators’. Of the nine respondents who gave more importance to the parents’ opinion than the child’s, eight said that they would have intubated the patient. The respondents that gave more importance to the child’s opinion were less likely to intubate the patient (seven of 17; P=0.036, Fisher exact test).

CONCLUSION

This study shows the variability of the end-of-life decision-making process for children. This assessment will foster an open debate on recognized factors during this process.     

L��alimentation des enfants ayant une d��ficience neurologique

Malnutrition, either under- or overnutrition, is a common condition among neurologically impaired children. Energy needs are difficult to define in this heterogeneous population, and there is a lack of information on what normal growth should be in these children. Non-nutritional factors may influence growth, but nutritional factors such as insufficient caloric intake, excessive nutrient losses and abnormal energy metabolism also contribute to growth failure. Malnutrition is associated with significant morbidity, while nutritional rehabilitation improves overall health. Nutritional support should be an integral part of the management of neurologically impaired children, and should focus not only on improving nutritional status but also on improving quality of life for patients and their families. When considering nutritional intervention, oromotor dysfunction, gastroesophageal reflux and pulmonary aspiration must be addressed and a multidisciplinary team should be involved. Children at risk for nutrition-related problems should be identified early. An assessment of nutritional status should be performed at least yearly, and more frequently in infants and young children, or in children at risk for malnutrition. Oral intake should be optimized if safe, but enteral tube feedings should be initiated in children with oromotor dysfunction, leading to clinically significant aspiration, or in children unable to maintain an adequate nutritional status with oral intake. Nasogastric tube feeding should be used for short-term intervention, but if long-term nutritional intervention is required, a gastrostomy should be considered. Antireflux procedures should be reserved for children with significant gastroesophageal reflux. The patient’s response to nutritional intervention should be carefully monitored to avoid excessive weight gain after initiation of enteral nutrition, and paediatric formulas should be used to avoid micronutrient deficiencies.Les maladies chroniques ont de fortes répercussions sur l’état nutritionnel. Chez les patients ayant une déficience neurologique (DN), la malnutrition nuit à la qualité de vie et s’associe à un recours accru aux soins de santé et à une perturbation de la participation à diverses activités (1). La réadaptation nutritionnelle s’associe à une amélioration de l’état de santé global et de la circulation périphérique, à la guérison des escarres de décubitus et à une diminution de la spasticité, de l’irritabilité et du reflux gastro-œsophagien chez les patients ayant une déficience neurodéveloppementale (2–5). Une forte proportion d’enfants ayant une déficience neurodéveloppementale sont malnutris (6–9). Cet état de malnutrition a déjà été perçu comme un aspect de la maladie, mais on comprend maintenant mieux l’importance de la nutrition au sein de cette population. Les soins nutritionnels des enfants ayant une déficience neurodéveloppementale se sont améliorés depuis la découverte de modes d’accès entéral moins effractifs et de préparations entériques mieux tolérées. Nous devons fournir à ces patients souvent complexes un soutien nutritionnel pertinent, grâce à la participation d’une équipe multidisciplinaire composée de médecins, d’infirmières, de diététistes, d’orthophonistes, d’ergothérapeutes et de psychologues qui cherchent tous à améliorer la qualité de vie de l’enfant et de sa famille.