OBJECTIVES:1) to evaluate the feasibility of a pilot trial on the effectiveness of a pediatric intensive care unit (PICU) diary intervention; 2) to explore group differences in parent's and child's psychological outcomes and children's behaviors after discharge from PICU. METHODS:A non-blinded, single-centered, pilot randomized controlled trial (RCT) was performed in two PICUs at a tertiary care children's hospital in Italy. Children admitted to the PICU, <18 years old, sedated and intubated for ≥ 48 h were eligible. The exclusion criteria included severe disability (Pediatric Overall Performance Category > 3), low Italian communication proficiency, and no life expectancy. The intervention was the PICU narrative diary. RESULTS:A total of 119 patients were prospectively enrolled from June 2021 to June 2024, of which 60 received a PICU diary, and 59 did not. The composite feasibility outcomes, including eligibility, recruitment, retention, attrition, and protocol adherence met 6 of the 8 criteria. At 1 and 3 months after PICU discharge Post Traumatic Stress Disease (PTSD), anxiety, depression in parents and children, and children's behaviors were measured with validated scales. At the one-month follow-up, parents in the control group had a higher PTSD (21 % vs 11 % p = 0.1) and depression (28 % vs 25 % p = 0.7) and lower anxiety (54 % vs 60 % p = 0.5) compared to the intervention group. At 3 months, lower levels were observed across all outcomes. Parent satisfaction with the intervention was high. The small sample size and lack of blinding were the main study limitations. CONCLUSIONS:The trial was feasible and acceptable. No significant differences in parents' and children' psychological outcomes were found among the study groups. IMPLICATIONS FOR CLINICAL PRACTICE:PICU diaries could be a valuable support tool for parents and children admitted to PICU. Further evidence through larger RCTs is needed to understand the effect of post-PICU discharge psychological outcomes on children and their parents.

Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5-18 years diagnosed with CoA and their parents were enrolled at Bambino Ges & ugrave; Children's Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9-14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (p = .037), as well as treatment anxiety (p = .033), and cognitive problems (p = .021). Pediatric patients with CoA perceived their HRQoL better than their mothers did. Female sex and older age were associated with lower HRQoL scores.

Objectives: To explore how the multi-professional pediatric intensive care unit staff experienced the imple-mentation of the diary.Research Methodology/Design: Qualitative study using the implementation research approach. Setting: a six-bed pediatric intensive care unit at a large Italian tertiary care pediatric hospital, treating patients with acute conditions from the Emergency Department or hospital wards.Main outcome measures: Healthcare providers' experiences of the implementation of the diaries. Data was collected by focus groups and interviews and thematic analysis was performed.Findings: Three focus groups and four interviews with staff were conducted after the implementation of thediaries from August 2020 to June 2021. Staff describe an initial disbelief towards the effectiveness of diaries followed by an increasing perception of their relevance for parents' emotional expression through shared narration. Diaries are reported as a beneficial communication tool between the family, the child, and health care providers, increasing staff understanding of parents' experiences of their child's admission and parents' sense of the care received by their child. For staff, barriers for diary writing were logistics, lack of time, limited sense of ownership, fear of legal retaliation and fear of emotional labor.Conclusion: Health care providers perceived diaries as beneficial for parents and the healthcare team, potentially supporting their partnership as recommended by Family Centered Care models. The enablers and barriers that emerged for diary writing can support the development of implementation strategies to prevent the reported challenges to diary writing in the healthcare team, enhancing their uptake in the pediatric intensive care unit setting.

Abstract Background Congenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers’ interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL. Methods A cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of “Bambino Gesù” Children’s Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal–Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications. Results 498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5–7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8–12 years and adolescents (13–18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5–7 years old, both for condition-specific and generic QoL rates. Conclusions Our study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.

BACKGROUND:The implementation of paediatric intensive care unit (PICU) diaries has been reported as feasible in routine care. To date no feasibility study has compared PICU healthcare providers' (HCPs) and parents' opinions on this tool. OBJECTIVES:The aim of this study is to describe the feasibility and perception of PICU diaries in an Italian PICU from the point of view of parents and HCPs. METHODS:This is a single-centre, prospective, observational study conducted in a tertiary care paediatric hospital from August 2020 to May 2021. Children admitted to the emergency department PICU, intubated, and sedated for ≥48 h were enrolled. To explore their perceptions and attitudes with the PICU diary, parents were interviewed at 30 days from their child's discharge from the PICU, whereas PICU HCPs were surveyed at the end of the study. Data were analysed as proportions for categorical variables and means and medians for continuous variables according to the distribution, whereas qualitative data were summarised in categories by two independent researchers. RESULTS:Twenty families were enrolled in this study. A total of 275 daily PICU diary entries were collected. Children's median age was 9 years (interquartile range = 2-13.25), and the length of stay ranged from 6 to 39 days. PICU diary applicability was rated high by parents and HCPs (>8 on a 1-10 Likert scale). Parents and HCPs perceived PICU diaries as beneficial for communication between staff and families, for parents by expressing their emotions and for staff by becoming aware of how parents experienced their child's admission. Reported barriers were the lack of a private environment, the risk of exposure to public reading, and PICU workload. CONCLUSIONS:PICU diaries were feasible and perceived as beneficial both by parents and HCPs. Future research is warranted to understand the effect of PICU diaries on post-PICU outcomes.

Background: Delirium, bed immobilization, and heavy sedation are among the major contributors of pediatric post-intensive care syndrome. Recently, the Society of Critical Care Medicine has proposed the implementation of daily interventions to minimize the incidence of these morbidities and optimize children functional outcomes and quality of life. Unfortunately, these interventions require important clinical and economical efforts which prevent their use in many pediatric intensive care units (PICU). Aim: First, to evaluate the feasibility and safety of a PICU bundle implementation prioritizing delirium screening and treatment, early mobilization (<72 h from PICU admission) and benzodiazepine-limited sedation in a human resource-limited PICU. Second, to evaluate the incidence of delirium and describe the early mobilization practices and sedative drugs used during the pre- and post-implementation periods. Third, to describe the barriers and adverse events encountered during early mobilization. Methods: This observational study was structured in a pre- (15th November 2019–30th June 2020) and post-implementation period (1st July 2020–31st December 2020). All patients admitted in PICU for more than 72 h during the pre and post-implementation period were included in the study. Patients were excluded if early mobilization was contraindicated. During the pre-implementation period, a rehabilitation program including delirium screening and treatment, early mobilization and benzodiazepine-sparing sedation guidelines was developed and all PICU staff trained. During the post-implementation period, delirium screening with the Connell Assessment of Pediatric Delirium scale was implemented at bedside. Early mobilization was performed using a structured tiered protocol and a new sedation protocol, limiting the use of benzodiazepine, was adopted. Results: Two hundred and twenty-five children were enrolled in the study, 137 in the pre-implementation period and 88 in the post-implementation period. Adherence to delirium screening, benzodiazepine-limited sedation and early mobilization was 90.9, 81.1, and 70.4%, respectively. Incidence of delirium was 23% in the post-implementation period. The median cumulative dose of benzodiazepines corrected for the total number of sedation days (mg/kg/sedation days) was significantly lower in the post-implementation period compared with the pre-implementation period: [0.83 (IQR: 0.53–1.31) vs. 0.74 (IQR: 0.55–1.16), p = 0.0001]. The median cumulative doses of fentanyl, remifentanil, and morphine corrected for the total number of sedation days were lower in the post-implementation period, but these differences were not significant. The median number of mobilizations per patient and the duration of each mobilization significantly increased in the post-implementation period [3.00 (IQR: 2.0–4.0) vs. 7.00 (IQR: 3.0–12.0); p = 0.004 and 4 min (IQR: 3.50–4.50) vs. 5.50 min (IQR: 5.25–6.5); p < 0.0001, respectively]. Barriers to early mobilization were: disease severity and bed rest orders (55%), lack of physicians' order (20%), lack of human resources (20%), and lack of adequate devices for patient mobilization (5%). No adverse events related to early mobilization were reported in both periods. Duration of mechanical ventilation and PICU length of stay was significantly lower in the post-implementation period as well as the occurrence of iatrogenic withdrawal syndrome. Conclusion: This study showed that the implementation of a PICU liberation bundle prioritizing delirium screening and treatment, benzodiazepine-limited sedation and early mobilization was feasible and safe even in a human resource-limited PICU. Further pediatric studies are needed to evaluate the clinical impact of delirium, benzodiazepine-limited sedation and early mobilization protocols on patients' long-term functional outcomes and on hospital finances.

Problem: Health diaries with both clinical and narrative elements have been widely used in pediatrics to study children's and families' experiences of illness and coping strategies. The objective of this study is to obtain a synthesis of the literature about narrative health diaries using the PRISMA extension for scoping reviews. Eligibility criteria: Sources were limited to: English language; narrative diaries; children/adolescents and/or parents/caregivers. Sample: The following databases were searched: PubMed, Embase and CINAHL with no time limits. Results: Among 36 articles included the most common context where a diary was implemented was the home (61%), the hospital (17%) and the school (14%). The most common diarist is the child or adolescent (50%). Paper diary was the most common type (53%), followed by the video diary (19%), the e-diary (8%) or the audio diary (8%). None of the studies explored the impact of the use of diaries on patient outcomes. Conclusions: The narrative health diary is used to report patient experiences of illness or common life from the point of view of the child, adolescent or other family members. The diversity of the diaries found shows how the narrative diary may be 'adapted' to different settings and pediatric populations. Implications: The narrative diary is a relevant tool for the exploration of children's and adolescents' experiences of illness and common life. Studies are still needed to describe the impact of narrative diaries keeping on children's health outcomes. (c) 2021 Elsevier Inc. All rights reserved.

Abstract Background Congenital heart disease (CHD) accounts for nearly a third of all major congenital anomalies. Advances in pediatric cardiology shifted attention from mortality to morbidity and health-related quality of life (HRQOL) of patients with CHD and impact on their families. The purposes of this study were to assess the validity and reliability of the Italian version of the Pediatric Quality of Life (PedsQL) Cardiac Module and to create normative data for the Italian population. Methods This was an observational cross-sectional study of pediatric patients (aged 2–18 years) with congenital or acquired Heart Disease (HD) and their parents. Families were asked to complete the cardiac pediatric health-related quality of life questionnaire (the Italian PedsQL™ 3.0 Cardiac Module) and the generic pediatric health-related quality of life questionnaire (PedsQL™ 4.0 Generic Core Scales). The sequential validation procedure of the original United States version of the PedsQL™ 3.0 Cardiac Module was carried out under the instruction of the MAPI Research Institute. To assess construct validity, Pearson’s correlation coefficients were assessed between scores on the Cardiac Module scales and scores on the scales of the General Module. To determine agreement between patient self-report and parent proxy-report, we used intraclass correlation coefficients (ICCs). To evaluate Internal consistency of items, we used Cronbach’s alpha Coefficient. Results The study enrolled 400 patients. Construct validity is good between PedsQL Cardiac Module total scores and PedsQL total scores (p < 0.001). The recommended standard value of 0.7 was reached on the Cardiac and General Module core scales. Intercorrelations between PedsQL Cardiac module and PedsQL scores revealed medium to large correlations. In general, correlations between Patient self-reports are poorer than Parent-proxy ones. Conclusions Cardiac PedsQL scores are valid and reliable for pediatric patients with congenital and acquired HD and may be useful for future research and clinical management.

BACKGROUNDThe paediatric intensive care unit (PICU) diary is a shared tool, kept at the patient bedside, written by relatives and health care providers. There is little evidence about its feasibility and how it supports the families of children admitted to the PICU. Currently, there is no evidence about how the PICU diary is used and what we can learn from it.AIMTo explore the contents of narrative PICU diaries in an Italian PICU.STUDY DESIGNQualitative study of PICU diaries conducted with a narrative research approach.METHODSChildren sedated and mechanically ventilated for >48 hours were enrolled in a six-bed Italian PICU of a tertiary care paediatric hospital. During the child's PICU admission, caregivers, relatives, friends, and health care providers were invited to report events, thoughts, and messages, and attach drawings/pictures for the child in the PICU diary. A thematic analysis of the PICU diary contents was performed.RESULTSThirteen PICU diaries were completed between August and December 2020, mainly by parents (n = 95; 45%) and health care providers (n = 52; 25%). Three main themes emerged: "Social and spiritual support," "Caregiver's emotions, feelings and distress," and "PICU life." Diaries offer insight into caregivers' emotions, social support, clinical activities, and interactions with health care providers, and on progression towards recovery.CONCLUSIONPICU diaries are valuable in facilitating family-centred care by providing a space for the written account of the child's admission by parents, other visitors, and health care providers.RELEVANCE TO CLINICAL PRACTICEPICU diaries support the relationship and the communication between the family and the team; they provide an informal account of the emotions and needs of parents that has the potential to improve mutual understanding and family-centred care. Social support and spiritual support are key elements reported by parents for coping with their child's PICU admission.

Childhood chronic illness is a potential source of distress and can be a traumatic experience both for the child and for the family. Several studies highlighted the importance of integrating psychosocial care and standard medical practice in the child’s care. The current pilot study is the first investigation that compared distress in children and their mothers living through a life-threatening illness (cancer) and a non life-threatening (juvenile rheumatoid arthritis) chronic disease. Findings show that there are differences in the psychological functioning in children with respect to age. Moreover, the presence of posttraumatic stress symptoms in mothers of children with cancer seems to be a possible key to understanding the psychological response in this specific population.

In 1979, the department of Psychology started its activity to provide psychological support to patients and their families during the course of treatment and during the follow-up period. Since 1986, a transplantation program was initiated in the cardiology and pediatric cardiac surgery departments, performing 179 cardiac, 3 heart-kidney, 18 heart-lung 14 both lung, 1 heart-lung-liver, and 1 single lung transplantation. From 1993, to September 2010 the kidney transplant program has performed. 218 cases. Since 2008, we performed (32 liver and 1 intestinal transplantations). We examined the quality of life and coping with transplantation attitudes because there is recent evidence of high levels of family anxiety and depression related to a child's poor response to the disease and compliance. Our work associated post-traumatic stress disorder (PTSD) with anxiety and with these clinical variables: gender pathology, rejection, number of drugs frequency of hospital visits, number of hospitalizations, as well as age at and time from transplantation. We examined 56 parents (25 fathers and 31 mothers) of cardiac transplant recipients. Our most relevant data demonstrated the presence of PTSD among 52% of mothers and 40% of fathers. Significant correlations were observed within the trait of anxiety. No correlations were noted between PTSD and other variables. Testing anxiety levels of parents is considered to be basic to provide psychological support to parents, encourage personal skills, and avoid PTSD symptoms.