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AIM: To develop a trigger tool for parents and lay caregivers of children with medical complexity (CMC) at home and to validate its content. DESIGN: This was a multi-method study, using qualitative data, a Delphi method and a concept mapping approach. METHODS: A three-round electronic Delphi was performed from December 2021 to April 2022 with a panel of 23 expert parents and 30 healthcare providers, supplemented by a preliminary qualitative exploration of children's signs of deterioration and three consensus meetings to develop the PArents' Trigger Tool for Children with Medical Complexity (PAT-CMC). Cognitive interviews with parents were performed to assess the comprehensiveness and comprehensibility of the tool. The COREQ checklist, the COSMIN guidelines and the CREDES guidelines guided the reporting respectively of the qualitative study, the development and content validity of the trigger tool and the Delphi study. RESULTS: The PAT-CMC was developed and its content validated to recognize clinical deterioration at home. The tool consists of 7 main clusters of items: Breathing, Heart, Devices, Behaviour, Neuro-Muscular, Nutrition/Hydration and Other Concerns. A total of 23 triggers of deterioration were included and related to two recommendations for escalation of care, using a traffic light coding system. CONCLUSION: Priority indicators of clinical deterioration of CMC were identified and integrated into a validated trigger tool designed for parents or other lay caregivers at home, to recognize signs of acute severe illness and initiate healthcare interventions. IMPACT: The PAT-CMC was developed to guide families in recognizing signs of deterioration in CMC and has potential for initiating an early escalation of care. This tool may also be useful to support education provided by healthcare providers to families before hospital discharge. PATIENT OR PUBLIC CONTRIBUTION: Parents of CMC were directly involved in the selection of relevant indicators of children's clinical deterioration and the development of the trigger tool. They were not involved in the design, conducting, reporting or dissemination plans of this research.
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BACKGROUND: Internationally, there is an increasing trend in using Rapid Response Systems (RRS) to stabilize in-patient deterioration. Despite a growing evidence base, there remains limited understanding of the processes in place to aid the early recognition and response to deteriorating children in hospitals across Europe. AIM/S: To describe the processes in place for early recognition and response to in-patient deterioration in children in European hospitals. STUDY DESIGN: A cross-sectional opportunistic multi-centre European study, of hospitals with paediatric in-patients, using a descriptive self-reported, web-based survey, was conducted between September 2021 and March 2022. The sampling method used chain referral through members of European and national societies, led by country leads. The survey instrument was an adaptation to the survey of Recognition and Response Systems in Australia. The study received ethics approval. Descriptive analysis and Chi-squared tests were performed to compare results in European regions. RESULTS: A total of 185 questionnaires from 21 European countries were received. The majority of respondents (n = 153, 83%) reported having written policies, protocols, or guidelines, regarding the measurement of physiological observations. Over half (n = 120, 65%) reported that their hospital uses a Paediatric Early Warning System (PEWS) and 75 (41%) reported having a Rapid Response Team (RRT). Approximately one-third (38%) reported that their hospital collects specific data about the effectiveness of their RRS, while 100 (54%) reported providing regular training and education to support it. European regional differences existed in PEWS utilization (North = 98%, Centre = 25%, South = 44%, p < .001) and process evaluation (North = 49%, Centre = 6%, South = 36%, p < .001). CONCLUSIONS: RRS practices in European hospitals are heterogeneous. Differences in the uptake of PEWS and RRS process evaluation emerged across Europe. RELEVANCE TO CLINICAL PRACTICE: It is important to scope practices for the safe monitoring and management of deteriorating children in hospital across Europe. To reduce variance in practice, a consensus statement endorsed by paediatric and intensive care societies could provide guidance and resources to support PEWS implementation and for the operational governance required for continuous quality improvement.
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AIM: To explore the process of recognition and response to clinical deterioration of children with medical complexity at home by their parents. BACKGROUND: Children with medical complexity are characterised by known chronic conditions associated with frailty and functional limitations, dependence on healthcare services and high use of technology and resources. Their medical complexity often leads to the onset of complications. Targeted care ensures timely recognition and response to clinical deterioration at home, thus avoiding serious sequelae, inappropriate hospitalisations and improving quality of life. Evidence on parents' process of the recognition and response to clinical deterioration at home is limited. DESIGN: Qualitative study using a Grounded Theory methodology. METHOD: Seven online focus groups were conducted with parents and healthcare providers experienced in their care. The interviews were transcribed verbatim and analysed through open, axial and selective coding, using a constant comparative iterative method. The COREQ guidelines guided the reporting of this work. RESULTS: Four categories and one core category were identified: (1) Awareness of the unique and shared characteristics of children with medical complexity; (2) Parents' care maintenance and management; (3) Parents' care monitoring; (4) Parents' response to clinical deterioration and (5) Seeking the Shift of Agency, the core category as the foundation of the Process of Recognition and rEsponse of PAREnts to Deterioration (PRE-PARE-D) theory. CONCLUSION: The role of parents of children with medical complexity is evolving into active care leaders, by developing care management and care monitoring competences and negotiating care with healthcare providers. RELEVANCE TO CLINICAL PRACTICE: The shift of agency from healthcare providers to parents requires education and counselling pathways to promote the development of parent's self-efficacy, competencies and empowerment in the care management of their children. Home care delivery for children with medical complexity should aim at sustaining this partnership between healthcare providers and parents.
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Deterioro Clínico , Servicios de Atención de Salud a Domicilio , Humanos , Niño , Teoría Fundamentada , Calidad de Vida , Padres , Investigación CualitativaRESUMEN
AIMS: To describe: 1) systems in place for recognition and response to deteriorating children in Italy, 2) attitudes and practices of registered nurses (RN) towards vital signs (VS) monitoring in pediatric wards, 3) the associations of nurses attitudes and pratices with nurses' and organizational characteristics. DESIGN AND METHODS: A multicentre cross-sectional correlational study. Data were collected between January-May 2020 using: an adapted version of the 'Survey on Recognition and Response Systems in Australia', and the 'Ped-V Scale'. Descriptive and adjusted linear regression analysis was performed, accounting for clustering. RESULTS: Ten Italian hospitals participated, 432 RNs responded to the Ped-V scale (response rate = 52%). Five (50%) hospitals had a VS policy in place, three hospitals (30%) had a Pediatric Early Warning System (PEWS), almost all hospitals had a system in place to respond to deteriorating children. Following multivariate regression analysis, having a PEWS was significantly associated with Ped-V scale 'Workload', 'Clinical competence', 'Standardization' dimensions; gender was associated with 'key indicators' and pediatric surgical ward with 'Clinical competence'. CONCLUSIONS: The use of VS policies and PEWS was not consistent across hospitals caring for children in Italy. Nurses' attitudes and practices (i.e., perception of workload, and clinical competence) were significantly lower in hospitals with increased complexity of care/PEWS. Gender was significantly associated with knowledge scores. PRACTICE IMPLICATIONS: System strategies to improve nurses' attitudes and practices towards VS monitoring and education are warranted to support effective behaviors towards VS monitoring, their interpretation, and appropriate communication to activate the efferent limb of the rapid response system.
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Enfermeras y Enfermeros , Personal de Enfermería en Hospital , Humanos , Niño , Estudios Transversales , Carga de Trabajo , Hospitales , Signos Vitales , Encuestas y Cuestionarios , Conocimientos, Actitudes y Práctica en Salud , Actitud del Personal de SaludRESUMEN
Introduction: Whereas ample information describes medication errors (MEs) in children or in mixed pediatric and adult populations discharged with acute or chronic diseases from hospital to community settings, little is known about MEs in children and adolescents with chronic diseases discharged home, a major concern. To promote home medication safety, we trained parents of children discharged with chronic diseases to record ME with a tailored cell-phone eHealth app. Methods: In a 1-year prospective study, we used the app to monitor ME in patients with chronic diseases discharged home from a tertiary hospital in Rome, Italy. Univariate and multivariate analyses detected the ME incidence rate ratio (IRR). Results: Of the 310 parents enrolled, 194 used the app. The 41 MEs involved all drug management phases. The ME IRR was 0.46 errors per child. Children <1 year had the highest ME risk (1.69 vs. 0.35, p = 0.002). Children discharged from the cardiology unit had a statistically higher ME IRR than others (3.66, 95% confidence interval: 1.01-13.23%). Conclusions: The highest ME risk at home involves children with chronic diseases <1 year old. A significant ME IRR at home concerns children with heart diseases of any age. Parents find a tailored eHealth app for monitoring and reporting ME at home easy to use. At discharge, clinical teams need to identify age-related and disease-residual risks to target additional actions for monitoring ME, thus increasing medication safety at home.
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Aplicaciones Móviles , Adulto , Adolescente , Humanos , Niño , Lactante , Estudios Prospectivos , Errores de Medicación , Enfermedad Crónica , Centros de Atención TerciariaRESUMEN
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.
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Hospitalización , Padres , Niño , Humanos , Estudios Prospectivos , Padres/psicología , Personal de Salud , Unidades de Cuidado Intensivo PediátricoRESUMEN
The aim of the work is to describe the protocol adopted by the Home Care Service in pediatric onco-hematological patients of a large cancer institute in Italy during COVID-19 pandemic and to present preliminary data. Based on our experience, we have developed strategies to ensure continuity of care, non-abandonment, and protection of patients and operators in a period of emergency like this. In this context, the "COVID at home" protocol plays a central role. It aims to be able to safely manage COVID-19 positive onco-hematological patients, allowing nursing and medical care in the home setting, identifying patients at risk for COVID-19 infection, and rationalizing improper accesses to the hospital.
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COVID-19 , Servicios de Atención de Salud a Domicilio , Neoplasias , Niño , Humanos , Neoplasias/epidemiología , Neoplasias/terapia , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: Escalation and de-escalation are a routine part of high-quality care that should be matched with clinical needs. The aim of this study was to describe escalation of care in relation to the occurrence and timing of Pediatric Intensive Care Unit (PICU) admission in a cohort of pediatric inpatients with acute worsening of their clinical condition. METHODS: A monocentric, observational cohort study was performed from January to December 2018. Eligible patients were children: 1) admitted to one of the inpatient wards other than ICU; 2) under the age of 18 years at the time of admission; 3) with two or more Bedside-Paediatric-Early-Warning-System (BedsidePEWS) scores ≥ 7 recorded at a distance of at least one hour and for a period of 4 h during admission. The main outcome -the 24-h disposition - was defined as admission to PICU within 24-h of enrolment or staying in the inpatient ward. Escalation of care was measured using an eight-point scale-the Escalation Index (EI), developed by the authors. The EI was calculated every 6 h, starting from the moment the patient was considered eligible. Analyses used multivariate quantile and logistic regression models. RESULTS: The 228 episodes included 574 EI calculated scores. The 24-h disposition was the ward in 129 (57%) and the PICU in 99 (43%) episodes. Patients who were admitted to PICU within 24-h had higher top EI scores [median (IQR) 6 (5-7) vs 4 (3-5), p < 0.001]; higher initial BedsidePEWS scores [median (IQR) 10(8-13) vs. 9 (8-11), p = 0.02], were less likely to have a chronic disease [n = 62 (63%) vs. n = 127 (98%), p < 0.0001], and were rated by physicians as being at a higher risk of having a cardiac arrest (p = 0.01) than patients remaining on the ward. The EI increased over 24 h before urgent admission to PICU or cardiac arrest by 0.53 every 6-h interval (CI 0.37-0.70, p < 0.001), while it decreased by 0.25 every 6-h interval (CI -0.36-0.15, p < 0.001) in patients who stayed on the wards. CONCLUSION: Escalation of care was related to temporal changes in severity of illness, patient background and environmental factors. The EI index can improve responses to evolving critical illness.
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Deterioro Clínico , Paro Cardíaco , Adolescente , Niño , Hospitales , Humanos , Estudios Retrospectivos , Atención Terciaria de SaludRESUMEN
OBJECTIVES: Analyze the effectiveness of an intervention to reduce waiting time and patients leaving without being seen in the pediatric emergency department. METHODS: A comparative observational study was carried out from November 2018 to April 2019.Patients aged 3 months to 17 years were included. The new organizational model consisted of a dedicated outpatients' clinic for nonurgent codes and a fast track for traumatic and surgical emergency cases. RESULTS: The comparative group included 14,822, and the intervention group included 15,585 patients. The new organizational model significantly reduced the numbers of patients who left the ED without being seen from 12.9% to 5.9%. CONCLUSIONS: This new organizational model in the pediatric emergency department could be successfully used to reduce overcrowding, waiting time, and the numbers of patients leaving without being seen. However, more needs to be done by the pediatric services in the community to reduce nonurgent accesses to the emergency department.
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Servicio de Urgencia en Hospital , Listas de Espera , Niño , HumanosRESUMEN
PURPOSE: To develop and psychometrically test an instrument measuring the attitudes and practices towards vital signs (VS) monitoring in nurses caring for children on paediatric wards (Ped-V scale). DESIGN AND METHODS: This is a multicentre cross-validation study with a cross-sectional design. The Ped-V scale was developed by adapting the V-scale to the paediatric context and administered to a convenience sample of clinical nurses working in paediatric wards from January to May 2020. The content validity of the Ped-V scale was evaluated by a group of 10 experts. The psychometric properties of the scale were tested through Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA). RESULTS: Overall, 10 Italian hospitals participated in the study, and 640 questionnaires were completed (87% female). At EFA a 30-item version of the scale and four factors emerged. This solution was confirmed at CFA: F1) 'Inaccuracy of VS monitoring and workload'; F2) 'Clinical competence and communication'; F3) 'Standardization and protocol adherence'; F4) 'Misconceptions about key indicators'. Cronbach's alpha ranged between 0.63 and 0.85. CONCLUSIONS: The Ped-V scale is valid and reliable for use in the paediatric context to identify barriers concerning nurses' self-efficacy, competences, and knowledge of clinical indicators of paediatric critical deterioration, attitudes towards accuracy, standardization, communication to senior team members and the appropriate use of technology in paediatric VS monitoring. PRACTICE IMPLICATIONS: The Ped-V scale may assist in identifying gaps in nurses' attitudes and devising strategies to change nurses' beliefs, knowledge, skills and decreasing individual, local cultural or organizational barriers towards VS monitoring.
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Enfermeras y Enfermeros , Signos Vitales , Actitud del Personal de Salud , Niño , Estudios Transversales , Femenino , Hospitales , Humanos , Masculino , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
BACKGROUND: Involvement in research activities is complex in pediatric nursing and allied health professionals (AHPs). It is important to understand which individual factors are associated with it to inform policy makers in promoting research. METHODS: A cross-sectional observational study was conducted to describe the level of participation in research activities over the last ten years of nurses and AHPs working in a tertiary pediatric hospital. A large sample of nurses and AHPs working in an Italian academic tertiary pediatric hospital completed an online self-report questionnaire between June and December 2018. Three multivariate logistic regression analyses were performed to predict participation in research projects, speaking at conferences, and writing scientific articles. RESULTS: Overall, data from 921 health professionals were analyzed (response rate = 66%), of which about 21% (n = 196) reported participating in a research project, while 33% (n = 297) had attended a scientific conference as a speaker, and 11% (n = 94) had written at least one scientific paper. Having a Master or a Regional Advanced Course, working as an AHP or a ward manager, as well as regularly reading scientific journals and participation in an internal hospital research group or attendance in a specific course about research in the hospital, significantly predicted participation in research projects, speaking at conferences and writing scientific papers. It is important to foster research interest and competencies among health professionals to improve participation in research projects, speaking at conferences, and writing scientific papers. CONCLUSIONS: Overall, we found a good level of attendance at conferences as speakers (33%), a moderate level of participation in research (21%), and low levels for writing scientific papers (11%). Our study highlighted the need to support participation in research activities among nurses and AHPs. Policymakers should identify strategies to promote research among nurses and AHPs, such as protected rewarded time for research, specific education, strengthened collaboration with academics, and financial support. Moreover, hospital managers should promote the development of research culture among health professionals, to improve their research competencies and evidence-based practice.
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BACKGROUND: The 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. AIM: To explore the contents of narrative PICU diaries in an Italian PICU. STUDY DESIGN: Qualitative study of PICU diaries conducted with a narrative research approach. METHODS: Children 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. RESULTS: Thirteen 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. CONCLUSION: PICU 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 PRACTICE: PICU 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.
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Unidades de Cuidado Intensivo Pediátrico , Padres , Cuidadores/psicología , Niño , Emociones , Familia/psicología , Humanos , Padres/psicologíaRESUMEN
Children with medical complexity (CMC) are a high priority population with chronic illnesses dependent on the use of health services, on technological systems to support their vital functions and characterized by multiple health needs. One of the main challenges linked to chronic conditions is finding solutions to monitor CMC at home, avoiding re-hospitalization and the onset of complications. Telemedicine enables to remotely follow up patients and families. An integrative review was performed to assess whether telemedicine improves health outcomes for CMC. Medline/PubMed, CINAHL, Cochrane Library, Web of Science, and Scopus were searched to identify studies describing the effect of using telemedicine systems on health outcomes for CMC. The PRISMA guidelines were used to select the papers. The methodological quality of the studies was evaluated through the Johanna Briggs Institute critical appraisal tools and the Cochrane Collaboration ROB 2.0. A total of 17 papers met the quality criteria and were included. Specialized telemedicine systems (tele-visits), telehealth, and tele-monitoring have been reported to reduce unplanned hospitalizations and visits, decrease total costs for healthcare services and families, and increase satisfaction for family members. No effect was found on the quality of life in children and their families.Conclusion: Available evidence supporting the use of telemedicine in CMC is favorable but limited. High-quality methodological studies including other unexplored health outcomes such as mental health, hospital readmissions, mortality, caregiver competences, and self-efficacy are needed to confirm the effectiveness of telemedicine systems in improving health outcomes for CMC. What is Known: ⢠CMC are an extremely fragile patient population with frequent access to healthcare services compared with other chronic conditions. ⢠There is conflicting evidence of the effectiveness of telemedicine clinical outcomes, healthcare utilization, and costs in pediatrics. What is New: ⢠There is some evidence that for CMC, telemedicine reduces unplanned hospitalizations, healthcare service costs, and financial burden for families, while increasing caregivers' satisfaction with care. ⢠Further research is needed to confirm the effectiveness of telemedicine systems in improving health for CMC.
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Calidad de Vida , Telemedicina , Cuidadores , Niño , Enfermedad Crónica , Humanos , Evaluación de Resultado en la Atención de SaludRESUMEN
BACKGROUND: The aim of this study is to describe the adherence to the Bedside Pediatric Early Warning System (BedsidePEWS) escalation protocol in children admitted to hospital wards in a large tertiary care children's hospital in Italy. METHODS: This is a retrospective observational chart review. Data on the frequency and accuracy of BedsidePEWS score calculations, escalation of patient observations, monitoring and medical reviews were recorded. Two research nurses performed weekly visits to the hospital wards to collect data on BedsidePEWS scores, medical reviews, type of monitoring and vital signs recorded. Data were described through means or medians according to the distribution. Inferences were calculated either with Chi-square, Student's t test or Wilcoxon-Mann-Whitney test, as appropriate (P < 0.05 considered as significant). RESULTS: A total of 522 Vital Signs (VS) and score calculations [BedsidePEWS documentation events, (DE)] on 177 patient clinical records were observed from 13 hospital inpatient wards. Frequency of BedsidePEWS DE occurred < 3 times per day in 33 % of the observations. Adherence to the BedsidePEWS documentation frequency according to the hospital protocol was observed in 54 % of all patients; in children with chronic health conditions (CHC) it was significantly lower than children admitted for acute medical conditions (47 % vs. 69 %, P = 0.006). The BedsidePEWS score was correctly calculated and documented in 84 % of the BedsidePEWS DE. Patients in a 0-2 BedsidePEWS score range were all reviewed at least once a day by a physician. Only 50 % of the patients in the 5-6 score range were reviewed within 4 h and 42 % of the patients with a score ≥ 7 within 2 h. CONCLUSIONS: Escalation of patient observations, monitoring and medical reviews matching the BedsidePEWS is still suboptimal. Children with CHC are at higher risk of lower compliance. Impact of adherence to predefined response algorithms on patient outcomes should be further explored.
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Hospitalización , Hospitales Pediátricos , Niño , Humanos , Italia , Estudios Retrospectivos , Centros de Atención TerciariaRESUMEN
BACKGROUND: The role played by nurses in caring for children in pediatricians' officies in the community is crucial to ensure integrated care. In Italy, pediatricians are responsible for the health of children aged 0-14 years living in the community. This study aimed to describe Italian primary care pediatricians' opinions about the usefulness of several nursing activities that pediatric nurses could perform in pediatricians' offices. METHODS: An online survey with pediatricians working in primary care in Italy was conducted between April-December 2018. A 40-item questionnaire was used to assess four types of nursing activities: clinical care, healthcare education, disease prevention, and organizational activities. The answers ranged from 1 (not useful at all) to 6 (very useful). Moreover, three open-ended questions completed the questionnaire. RESULTS: Overall, 707 pediatricians completed the online survey. Participants were mainly female (63%), with a mean age of 57.74 (SD = 6.42). The presence of a pediatric nurse within the pediatrician's office was considered very useful, especially for healthcare education (Mean 4.90; SD 1.12) and disease prevention (Mean 4.82; SD 1.11). Multivariate analysis confirmed that pediatricians 'with less working experience', 'having their office in a small town', and 'collaborating with a secretary and other workers in the office' rated the nurse's activities significantly more useful. CONCLUSIONS: A pediatric nurse in the pediatrician's office can significantly contribute to many activities for children and their families in the community. These activities include clinical care, healthcare education, disease prevention, and the organizational processes of the office. Synergic professional activity between pediatricians and pediatric nurses could ensure higher health care standards in the primary care setting.
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Enfermeras Pediátricas , Pediatras , Niño , Atención a la Salud , Femenino , Humanos , Atención Primaria de Salud , Encuestas y CuestionariosRESUMEN
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.
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Familia , Pediatría , Adaptación Psicológica , Adolescente , Cuidadores , Niño , Humanos , NarraciónRESUMEN
PURPOSE: This study aimed to: (1) to assess the Quality of Life (QoL) of pediatric patients who had undergone Hematopoietic Stem Cell Transplantation (HSCT) and their parents; (2) to explore how patients and parents perceived a nurse counseling intervention; and (3) to explore how health professionals consider the nurse counselor's role. METHODS: This was a pilot descriptive study using quantitative and qualitative data. RESULTS: Parents' QoL was compromised in the domains of Social Functioning, Physical and Emotional roles. Patients' QoL was poor in all the domains except in Behavior and Family Cohesion. Patients and their parents considered the counseling as an effective help. Seven categories emerged from the analysis of qualitative data: support and taking charge, empathy, active communication and listening, evasion, sharing, awareness, and organizational availability. Regarding health professionals, five categories emerged from the analysis of the interviews and a focus group: support and taking charge, recovery in self-expression, support in relationship with patients and family, connecting role, and difficult integration within the team. CONCLUSIONS: The nurse counselor could empower patients and parents to improve their attitudes towards care pathway. The nurse counselor can be an important resource in the context of HSCT, even if greater integration within the team is required.
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Consejo/métodos , Trasplante de Células Madre Hematopoyéticas/psicología , Padres/psicología , Calidad de Vida , Adolescente , Adulto , Niño , Preescolar , Comunicación , Relaciones Familiares , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Masculino , Rol de la Enfermera , Enfermeras y Enfermeros/organización & administración , Proyectos PilotoRESUMEN
This systematic review synthesised and described instruments measuring parent satisfaction with the increasing standard practice of family-centred care (FCC) in neonatal intensive care units. We evaluated 11 studies published from January 2006 to March 2016: two studies validated a parent satisfaction questionnaire, and nine developed or modified previous questionnaires to use as outcome measures in their local settings. Most instruments were not tested on reliability and validity. CONCLUSION: Only two validated instruments included all six of the FCC principles and could assess parent satisfaction with FCC in neonatal intensive care units and be considered as outcome indicators for further research.
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Unidades de Cuidado Intensivo Neonatal/normas , Cuidado Intensivo Neonatal/métodos , Padres , Atención Dirigida al Paciente/normas , Satisfacción Personal , Adulto , Femenino , Humanos , Recién Nacido , Masculino , Evaluación de Resultado en la Atención de Salud , Encuestas y CuestionariosRESUMEN
PURPOSE: Journal Clubs (JCs) for nurses and allied health professionals have been held in an Italian pediatric hospital since April 2008. This study aimed to: examine what type of articles have been used during JCs across 5years; investigate the potential implications for clinical and organizational practice; assess the participants' satisfaction about JCs and their contribution to professional development. DESIGN AND METHODS: Using a retrospective design, all articles proposed in the JCs were examined. Specific criteria were used to evaluate the implications for practice within the hospital, which were classified as direct or indirect. Using a cross-sectional design, 63 JCs participants were asked to express their opinion and satisfaction about the JC sessions attended. RESULTS: Overall, 132 articles were analyzed: most of them focused on pediatric care (64.4%) and nursing (96.2%). Almost half of the articles (n=60, 45.6%) were appraised as having brought implications for clinical practice, both direct (58.3%) and indirect (41.7%). Forty-one participants (12 attendees; 29 active participants) completed a questionnaire about their opinion about JCs. Most of participants (80.5%) reported that the topics selected for the JCs were interesting and relevant to their everyday practice. CONCLUSIONS: Multidisciplinary JCs were considered useful for clinical practice, improvement of the quality of care, and professional development. However, lack of pragmatism and the difficulty to bridge the gap between research and practice were reported as weaknesses. PRACTICE IMPLICATIONS: JCs can represent a quality improvement strategy for promoting research utilization among health professionals and thereby improving the quality of care.
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PURPOSE: This study aimed to: (1) investigate the extent to which Family Centered Care (FCC) principles are currently applied in clinical practice by healthcare providers working in inpatient units; (2) evaluate the extent to which FCC principles are perceived as necessary; and (3) examine the associations between FCC principles and socio-demographic and job characteristics of participants. Design and Methods A cross-sectional study was conducted at a large pediatric hospital using the Italian version of the FCC Questionnaire Revised (FCCQ-R). Univariate and multivariate analyses were performed. RESULTS: Data from 469 healthcare providers were used for analysis. Scores for the FCC daily practices (Current activities) were significantly lower than those for their perceived necessity (Necessary activities) (pâ¯<â¯.001). Participants who were male, younger, with work experience >20â¯years and working in rehabilitation reported a significantly higher perception of Current activities of FCC than others. The older and the more educated the participants, the greater was the perceived necessity of FCC activities. Female, older, and less experienced participants employed by the hospital but not working in the rehabilitation setting perceived a greater gap between Necessary and Current activities of FCC. CONCLUSIONS: Scores for the Current and Necessary activities of FCC were lower than those reported in other studies. The lower scores in the Current activities and the significant gap can be due to organizational barriers or lack of skills, but the lower scores in the Necessary activities should be interpreted as a deficit of knowledge about FCC. PRACTICE IMPLICATIONS: There is a need for further education about FCC in order to increase its perceived relevance in clinical practice.