Effectiveness and family experiences of interventions promoting partnerships between families and pediatric and neonatal intensive care units: a mixed methods systematic review.

OBJECTIVE: The objective of this mixed methods review was to examine the effectiveness and family experiences of interventions promoting partnerships between families and the multidisciplinary health care team in pediatric and neonatal intensive care units. INTRODUCTION: Hospitalization of infants and children in neonatal intensive care units and pediatric intensive care units has a significant effect on their families, including increased stress, anxiety, and depression. Available evidence syntheses focused on specific family-centered care, but not on partnership, which is another aspect that may improve the families' outcomes and experiences. INCLUSION CRITERIA: This review focused on effectiveness and experiences of interventions by health professionals in partnership with families of infants or children hospitalized in an intensive care unit. The type of intervention was a partnership between the health care team and the family, and focused on outcomes of stress, anxiety, depression, quality of life, attachment, or satisfaction with family-centered care. METHODS: The JBI methodology for convergent segregated mixed methods systematic reviews was followed using the standardized JBI critical appraisal and data extraction tools. Ten databases were searched from January 2000 to April 2022. Findings of quantitative studies were statistically pooled through meta-analyses and those that could not pooled were reported in a narrative format. Qualitative studies were pooled through meta-synthesis. RESULTS: This review included 6 qualitative and 42 quantitative studies. There was mixed methodological quality and all studies were included regardless of methodological quality. Meta-analyses showed positive improvements in anxiety, satisfaction with family-centered care, and stress, yet no conclusive effects in attachment and depression. These results should be interpreted with caution due to high heterogeneity. Qualitative analysis resulted in 2 synthesized findings: "Interventions that incorporate partnerships between families and the health care team can improve the family's experience and capacity to care for the child" and "Having a child in intensive care can be an experience of significant impact for families" Integration of quantitative and qualitative evidence revealed some congruence between findings; however, the paucity of qualitative evidence minimized the depth of this integration. CONCLUSIONS: Partnership interventions can have a positive impact on parents of children in intensive care units, with improvements seen in stress, anxiety, and satisfaction with family-centered care. REVIEW REGISTRATION: PROSPERO CRD42019137834.

[Ten years of nurse consultation at the pediatric emergency department]. / Dix ans de consultation infirmière médico-déléguée aux urgences pédiatriques.

The Nurse consultation (CI) was implemented in 2013 at the emergency department of the Lausanne Children's Hospital. It offers medical delegated care for children aged three to 18. Ten years after its implementation, this article takes stock of its progress. Patients and families are satisfied with the care provided at a rate of 94.3 %. The CI seems to offer quality and safe healthcare. It allows the emergency team to have more time and resources for patients whose lives are at risk or need careful assessment due to their age or medical history. The CI is an innovative and relevant model of care in the context of uncomplicated childhood illnesses.

La consultation infirmière (CI) a été mise en place en 2013 aux urgences de l'Hôpital de l'enfance de Lausanne (HEL). Elle propose une prise en charge sous délégation médicale d'enfants âgés de trois à 18 ans. Dix ans après son implantation, cet article fait le point. Les patients et familles sont satisfaits de la prise en charge à 94,3 %. La CI semble offrir des soins de qualité et sécuritaires. Elle permet à l'équipe des urgences d'avoir plus de temps et de moyens pour les patients dont le pronostic vital est engagé ou qui sont à risque au vu de leur âge ou leurs antécédents. La CI est un modèle innovant et pertinent de prise en charge dans un contexte de pathologies simples de pédiatrie.

Comparison of clinical characteristics and healthcare resource use of pediatric chronic and non-chronic critically ill patients in intensive care units: a retrospective national registry study.

Introduction: Chronic critically ill patients (CCI) in pediatric intensive care unit (PICU) are at risk of negative health outcomes, and account for a considerable amount of ICU resources. This study aimed to (a) describe the prevalence of CCI children, (b) compare their clinical characteristics and ICU resources use with non-CCI children, and (c) identify associated risk factors of CCI. Methods: A retrospective national registry study including 2015-2017 data from the eight Swiss PICUs of five tertiary and three regional hospitals, admitting a broad case-mix of medical and surgical patients, including pre- and full-term infants. CCI patients were identified using an adapted definition: PICU length of stay (LOS) ≥8 days and dependence on ≥1 PICU technology. Results: Out of the 12,375 PICU admissions, 982 (8%) were CCI children and compared to non-CCI children, they were younger (2.8 vs. 6.7 months), had more cardiac conditions (24% vs. 12%), and higher mortality rate (7% vs. 2%) (p < 0.001). Nursing workload was higher in the CCI compared to the non-CCI group (22 [17-27]; 21 [16-26] respectively p < 0.001). Factors associated with CCI were cardiac (aOR = 2.241) and neurological diagnosis (aOR = 2.062), surgery (aORs between 1.662 and 2.391), ventilation support (aOR = 2.278), high mortality risk (aOR = 1.074) and agitation (aOR = 1.867). Conclusion: the results confirm the clinical vulnerability and the complexity of care of CCI children as they were defined in our study. Early identification and adequate staffing is required to provide appropriate and good quality care.

Sources of Stress, Family Functioning, and Needs of Families With a Chronic Critically Ill Child: A Qualitative Study.

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.

Effectiveness and family experiences of interventions promoting partnerships between families and pediatric and neonatal intensive care units: a mixed methods systematic review protocol.

OBJECTIVE: This mixed methods systematic review examines the effectiveness and family experiences of interventions that promote partnerships between parents and the multidisciplinary health care team in pediatric and neonatal intensive care units. INTRODUCTION: The hospitalization of a child or infant in an intensive care unit can have considerable negative effects on them and their family. Family members can experience increased stress, anxiety or depression and detrimental impacts on quality of life and family functioning. Interventions that promote families as health care partners may improve negative outcomes arising from intensive care hospitalization. INCLUSION CRITERIA: The review will include family members of pediatric or neonatal patients hospitalized in an intensive care unit. It will focus on interventions that promote partnership between families and multidisciplinary health care teams in pediatric and neonatal intensive care units and the family's experiences of these interventions. The outcomes of interest are stress, anxiety, depression, quality of life, family functioning, family empowerment or satisfaction with family-centered care. METHODS: The proposed review will follow the JBI methodology for convergent segregated mixed methods systematic reviews. It will search for published and unpublished studies from eight different sources. Studies will be reviewed by title and abstract and potentially eligible studies will have full text retrieved for further review. Studies meeting the inclusion criteria will be assessed on methodological quality and the data will be extracted. Separate quantitative and qualitative analysis and synthesis will be performed and an overall analysis will be presented. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42019137834.

Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project.

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.

Impact of manual control point selection accuracy on automated surface matching of digital dental models.

OBJECTIVES: Treatment outcomes are frequently evaluated based on the superimposition of digital dental models. However, errors from surface matching may distort these findings. The aims of this study were (i) to develop a simulation unit to mimic point set registrations and (ii) to evaluate the impact and clinical relevance of manual landmark selection errors on registration accuracy. MATERIAL AND METHODS: Ten randomly selected dental casts were digitized using a 3D laser scanner, and were loaded by an in-house developed simulation unit (MATLAB R2014a). First, the models were digitally duplicated and one surface was rotated and translated at random. Landmark-based registration was performed with 3 to 15 landmarks, and Gaussian noise was increased iteratively from 0 to 2 mm which simulated CP selection inaccuracy. Iterative closest point (ICP) matching was performed with and without addition of Gaussian noise. Finally, root-mean-squared (RMS) errors and Hausdorff distances were calculated, and averaged for each matching algorithm and noise level. RESULTS: Selection of 10 control points provided reliable registration even in the presence of noise. ICP improved registration results, but noise above 0.5 mm clearly worsened the outcomes. CONCLUSION: Reliable superimposition of digital dental models is possible if 10 carefully selected control points with deviation below 0.5 mm are used for initial landmark-based registration. CLINICAL RELEVANCE: Potential registration errors should be considered carefully whenever superimposed digital dental models are interpreted.

Skeletally anchored mesialization of molars using digitized casts and two surface-matching approaches : Analysis of treatment effects.

PURPOSE: To (1) quantify the three-dimensional treatment effect of a Mesialslider appliance using superimposed digital models, (2) to evaluate anchorage loss (measured by incisor displacement), and (3) to assess agreement between two different matching approaches, i.e., control point (CP)-based and iterative closest point (ICP) matching. METHODS: In a retrospective study, the effects of a skeletally anchored uni- and bilateral mesialization appliance (Mesialslider) as well as simultaneous mesialization and distalization appliance (Mesio-Distalslider) were evaluated in 48 subjects (aged 11-53 years). Pre- and posttreatment casts were digitized and superimposed with two different approaches, i.e., using ten manually selected control points located at the anterior palate and by means of an automated ICP-matching approach using a standardized palatal reference area. The treatment effects were evaluated using control points on the maxillary central incisors and maxillary molar teeth, and the methods were compared through the application of linear regression analyses and computation of alignment errors. RESULTS: Average upper molar mesialization was 6.3 ± 2.6 mm. Anchorage loss, designated as the mean amount of upper incisor displacement, was less than 0.5 mm in all dimensions investigated. Using the measurement method sufficient registration was possible using both approaches and corresponding tooth movements were significantly correlated (p < 0.01). CONCLUSIONS: Accurate measurements of tooth displacement can be performed using both CP- and ICP-based matching approaches. Within the limits of performing a retrospective study, a premolar width of molar mesialization appeared possible without clinically relevant anchorage loss.

Measurement of parent satisfaction in the paediatric intensive care unit - Translation, cultural adaptation and psychometric equivalence for the French-speaking version of the EMPATHIC-65 questionnaire.

INTRODUCTION: Within paediatric intensive care units (PICUs), only a few parent satisfaction instruments are validated and none are available for French-speaking parents. The aims of the study were to translate and culturally adapt the Dutch EMPATHIC-65 questionnaire into a French version and to test its psychometric equivalence. METHODS: Two French-speaking PICUs in Switzerland and France participated. The questionnaire was translated using a standardised method and parents with PICU experience were interviewed to assess clarity of the translated version. Secondly, parents of children hospitalised for at least 24 hours and who were fluent in French, were invited to complete the French translated version of the EMPATHIC-65 questionnaire. Reliability and validity measures were used to examine its psychometric equivalence. RESULTS: The overall mean clarity agreement reached 90.2% by 17 French-speaking parents. Eight unclear items have subsequently been reworded. One hundred seventy-two parents completed the French version questionnaire. Reliability and convergent validity have been confirmed by an adequate internal consistency (0.59-0.89) and convergent validity (rs 0.25-0.63, p<0.01). CONCLUSION: Psychometric equivalence of the French EMPATHIC-65 questionnaire highlights the appropriateness of relying on available valid instrument to expand the availability of health instrument measure in French.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents 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. METHODS: Questionnaire 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. RESULTS: Of 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. CONCLUSIONS: Although 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.