BackgroundParents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services.MethodsQuestionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure.ResultsOf 307 eligible families, 267 could be contacted and 135 (51 %) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child’s EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences.ConclusionsAlthough positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0098-3) contains supplementary material, which is available to authorized users.

Background: Early mobilization of adults receiving intensive care improves health outcomes, yet little is known about mobilization practices in paediatric intensive care units (PICUs). We aimed to determine the prevalence of and factors associated with physical rehabilitation in PICUs across Europe. Methods: A 2-day, cross-sectional, multicentre point prevalence study was conducted in May and November 2018. The primary outcome was the prevalence of physical therapy (PT)-or occupational therapy (OT)-provided mobility. Clinical data and data on patient mobility, potential mobility safety events, and mobilization barriers were prospectively collected in patients admitted for ≥72 h. Results: Data of 456 children admitted to one of 38 participating PICUs from 15 European countries were collected (456 patient days); 70% were under 3 years of age. The point prevalence of PT-and/or OT-provided mobility activities was 39% (179/456) (95% CI 34.7-43.9%) during the patient days, with significant differences between European regions. Nurses were involved in 72% (924/1283) of the mobility events; in the remaining 28%, PT/OT, physicians, family members, or other professionals were involved. Of the factors studied, family presence was most strongly positively associated with out-of-bed mobilization (aOR 7.83, 95% CI 3.09-19.79). Invasive mechanical ventilation with an endotracheal tube was negatively associated with out-of-bed mobility (aOR 0.28, 95% CI 0.12-0.68). Patients were completely immobile on 25% (115/456) of patient days. Barriers to mobilization were reported on 38% of patient days. The most common reported patient-related barriers were cardiovascular instability (n = 47, 10%), oversedation (n = 39, 9%), and medical contraindication (n = 37, 8%). Potential safety events occurred in 6% of all documented mobilization events. Conclusion: Therapists are infrequently consulted for mobilization of critically ill children in European PICUs. This study highlights the need for a systematic and interdisciplinary mobilization approach for critically ill children.

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PICU hospitalization is particularly stressful for families. When it is prolonged and the prognostic is uncertain, it can significantly and negatively affect the whole family. To date, little is known on how families with a chronic critically ill (CCI) child are affected. This national study explored the specific PICU-related sources of stress, family functioning and needs of families of CCI patients during a PICU hospitalization. This descriptive qualitative study was conducted in the eight pediatric intensive care units in Switzerland. Thirty-one families with a child meeting the CCI criteria participated in semi-structured interviews. Interviews, including mothers only (n = 12), fathers only (n = 8), or mother and father dyads (n = 11), were conducted in German, French, or English by two trained researchers/clinical nurses specialists. Interviews were recorded, transcribed verbatim, and analyzed using deductive and inductive content analyses. Five overarching themes emerged: (1) high emotional intensity, (2) PICU-related sources of stress, (3) evolving family needs, (4) multi-faceted family functioning, and (5) implemented coping strategies. Our study highlighted the importance of caring for families with CCI children. Parents reported high negative emotional responses that affect their family functioning. Families experience was highly dependent on how HCPs were able to meet the parental needs, provide emotional support, reinforce parental empowerment, and allow high quality of care coordination.

Objectives: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. Design: Substudy of a nation-wide retrospective chart review. Setting: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland. Patients: One hundred forty-nine children (0–18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions. Interventions: None. Measurements and Main Results: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008). Conclusions: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Mots-clés lésion cérébrale; famille; intervention familiale; étude qualitative; facteurs contextuels Résumé Introduction : Les lésions cérébrales acquises (LCA) sont parmi les principales causes d'invalidité chez les adultes. Soutenir les familles des patients atteints de LCA fait partie des bonnes pratiques, mais cela n'est pas systématique en Suisse. En prévision de l'implantation d'une nouvelle intervention familiale, une analyse des facteurs contextuels a été effectuée. Objectifs : Cette étude avait pour objectifs de décrire les perspectives des cadres interdisciplinaires quant à l'accompagnement de ces familles et d'explorer les ressources ainsi que les obstacles liés au contexte de l'intervention. Méthodes : Une recherche qualitative descriptive a été conduite dans un département de neurosciences cliniques d'un hôpital de référence tertiaire. Des entrevues semi-structurées ont été menées auprès d'un échantillon ciblé de 8 cadres de soins, en suivant un guide d'entretien basé sur les Modèles de Calgary d'évaluation et d'intervention familiales. Les données ont été analysées selon la méthode d'analyse de contenu inductive et déductive. Résultats : Quatre catégories principales de systèmes inter reliés (système familial, système de soins, environnement et collaboration) et 15 sous-catégories ont émergées de l'analyse. La collaboration interprofessionnelle et les caractéristiques de l'environnement de travail étaient deux aspects importants pour les participants. Discussion et conclusion : Selon les participants, les soins actuels ne considèrent pas suffisamment les familles et ne les intègrent pas de manière satisfaisante. Des pistes d'amélioration concrètes comme l'intégration systématique et structurée des familles dès la phase aiguë d'hospitalisation, ainsi que le développement de la collaboration interprofessionnelle, sont recommandées pour soutenir les familles de patients atteints de LCA.

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During production of the original article [1], Additional file 2 of this article was linked to an incorrect document. Instead of the complete item list of the PaPEQu as the authors submitted it, it was a STROBE checklist. The correct additional file has been included with this erratum.