[What support for vulnerable people during confinement?] / Quel accompagnement pour les personnes vulnérables en contexte de confinement ?

What are the ethical issues in connection with the support of the most vulnerable people in a context of health crisis, forcing them to be confined? Because the concept of vulnerability is broad and complex, the "Espace éthique PACA-Corse" (PACA-Corsica Ethical Structure) has taken a particular interest in the care of children with disabilities, children entrusted to child welfare services and people with psychiatric disorders. Confinement has led to a reorganisation of the access to healthcare services and medico-social support, possibly revealing or aggravating some situations of vulnerability, or even pushing aside certain people. Those most isolated or at risk of abuse may have experienced a double confinement. How to identify and respond to the needs of people already in vulnerable situations before confinement, who, isolated in the epidemic context, have seen their vulnerabilities increase? While new ways of working have been introduced in times of containment, some were interesting, others have shown their limits. The challenge was to find the right measure to address the specificity of each situation, to activate care networks in an effective and supportive manner, despite limited resources and the emergency context. The difficulty was to make protocols and care values coexist, acting in a reactive and creative way. While revealing vulnerabilities, this period has required both humility toward uncertainty and a duty of responsibility to care for those most in need.

[Palliative care birth plan: a field of perinatal medicine to build]. / Projets de naissance en soins palliatifs : un domaine de la périnatalité à construire.

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

Quality of life of early school-age French children born preterm: a cohort study.

OBJECTIVES: To describe the health-related quality of life (HRQL) of a cohort of children aged 6-10 years who were born preterm; and to determine whether sociodemographic factors, neonatal features and neurocognitive status were affecting their HRQL. STUDY DESIGN: All singleton infants born between 24 and 32 weeks of gestation between January 1997 and December 2001 at the study hospital, who were still alive in 2007 (age 6-10 years), and who had undergone complete clinical paediatric follow-up were included in the study. Maternal and perinatal data were obtained by chart review and regular clinical examination. The 'Battery for Rapid Evaluation of Cognitive Functions' (BREV) was used for cognitive evaluation when children were aged 4-8 years. HRQL data were collected in 2007 using the 'Vécu et Santé Perçue de l'Adolescent et de l'Enfant' (VSP-A) questionnaire (parent version). The HRQL of the preterm children was compared with that of a French reference population. RESULTS: Of 202 children who fulfilled the inclusion criteria, 82 children participated in the study. Their mean age was 7.9 years [standard deviation (SD) 1.4], mean birth weight was 1130.0 g (SD 361.4), 23 children were born before 28 weeks of gestation, 46 were female and 11 had major neurocognitive disorders. These data were not significantly different for the non-respondents (n=120). Parents of preterm children reported a significantly lower perception of HRQL of their child compared with parents of children in the reference population, as reflected by VSP-A global index scores and scores for the 'body image', 'vitality', 'psychological well-being' and 'school performance' dimensions. In multivariate analyses, three factors were found to be significantly associated with at least one dimension in the VSP-A scale in the preterm children: presence of major neurocognitive disorders, negatively correlated with 'vitality', 'relationships with friends', 'physical well-being' and 'school performance' dimensions; maternal parity, positively correlated with the 'psychological well-being' dimension; and socio-economic status of family, positively correlated with the 'relationships with friends' dimension. The maximum R(2) was 15%. CONCLUSION: In addition to neurocognitive disorders, other variables such as socio-economic status of the family have a significant impact on the HRQL of preterm children at 6-10 years of age. Given the low proportion of variability in HRQL explained by the models, there is a need to explore other factors (e.g. environmental).

Parental experience following perinatal death: exploring the issues to make progress.

OBJECTIVES: This study was performed to understand the parental attitudes, needs and ethical issues associated with perinatal death, to assist in the development of interventions for bereaved families. STUDY DESIGN: We conducted a qualitative descriptive survey of parental experiences with perinatal death. We developed a questionnaire based on the Delphi method, conducted semi-directed interviews or asked subjects to return the questionnaire by post. As a secondary analysis, we examined whether certain ethical principles (i.e., the concepts of beneficence, nonmaleficence, autonomy, and justice) were encountered by the study participants. The study population consisted of families who had experienced perinatal death in the maternity department of a French university hospital, as well as members of bereaved parent support groups. RESULTS: Six of the 12 parents who participated in the survey were members of a support group. Responses were analyzed according to precise objectives and grouped according to key themes. In particular, we studied deaths that occurred during neonatal palliative care and deaths relating to multiple pregnancies. Parents expressed opinions about the caregivers' practices (e.g., which practices were beneficial and detrimental). Half of the parents did not feel that their feelings and decisions were respected according to ethical principles. Understanding the experience of parents allows staff to reconsider and change their practices. CONCLUSIONS: By understanding parents' feelings toward neonatal death, caregivers can better assist with the grieving process. Our study reveals parents' attitudes toward the ethical decision-making process and shows that it is difficult for perinatal medicine caregivers to respect parents' autonomy.

Congenital laryngeal cyst: benefits of prenatal diagnosis and multidisciplinary perinatal management.

Congenital laryngeal cysts are rare and can cause upper airway obstruction if they are misdiagnosed. We describe a case of large vallecular cyst diagnosed at 33 weeks of gestation. The purpose of an early diagnosis is to establish a careful perinatal management. If the airway is compromised, a multidisciplinary medical team is necessary to perform emergency immediate tracheostomy. Elective delivery should be always carried out in a tertiary referral center.

Clinical features and neuroradiological findings of mitochondrial pathology in six neonates.

OBJECTS: We hoped to itemize the clinical and neuroradiological features of six neonates with mitochondrial disorders. METHODS: We examined a case series of six neonates. The diagnosis of mitochondrial cytopathy was made on the basis of spectrophotometric measurements of respiratory chain enzyme activities in skeletal muscle biopsy specimens. Magnetic resonance (MR) imaging was performed in all cases. CONCLUSIONS: The antenatal onset in five cases and the lack of any symptom-free interval are suggestive of fetal expression of the disease. No specific symptoms were found: arthrogryposis congenita multiplex in one, progressive hepatocellular dysfunction in three, encephalomyelopathy and cardiomyopathy in four. Complex I deficiency was found in three patients, while one patients had a defect of complex IV and the last a combined defect of complexes I and IV. Neuroradiological findings were either cerebral atrophy or white matter abnormalities of the brain stem in all cases but one and gave additional information, because clinical symptoms are not quite specific. The combination of clinical and MRI findings in neonatal cases can rule out hypoxic ischemic encephalopathy, which suggests an additional screening method to look for mitochondrial disorder.