Objective:The objective of this scoping review is threefold: (1) to describe outcomes of and determinants for physical functioning in pediatric intensive care unit (PICU) survivors evaluated during and/or after their PICU stay, (2) to provide an overview how physical functioning and its associated determinants in this population are reported, measured and classified in accordance with the International classification of Functioning, Disability and Health-Children and Youth framework (ICF-CY) components and (3) to synthesize key gaps in knowledge and research and clinical recommendations related to our review questions.Introduction:Optimal physical functioning in children is of major importance in their developmental trajectories and for the prevention and recovery of health problems across lifespan. PICU children are at high risk of poor physical functioning during and after critical illness. A recent overview of the literature, concerning evaluation of physical functioning in PICU survivors according to the ICF-CY components, is lacking. Inclusion criteria:This review includes empirical studies reporting outcomes and determinants of physical functioning in PICU survivors evaluated during and/or after PICU stay. All English language studies reporting empirical data will be included with no restrictions set on the types of study designs used.Methods:This review will be conducted in accordance with the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) statement. To locate studies eligible for inclusion, the electronic databases Pubmed, EMBASE, CINAHL and Cochrane Library will be searched from the earliest records to October 2019. Study selection will be performed by two independent reviewers. Covidence software will be used to screen titles and abstracts as well as the full-text of included studies. Data extraction will be conducted using a customized form. The extracted data will be presented in diagrammatic or tabular form with an accompanying narrative summary.
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Crying by healthcare professionals in the medical setting is a common but understudied phenomenon. We aimed to develop a questionnaire which measures the attitudes of parent towards crying pediatricians and pediatric nurses. We assessed reliability and validity in a group of parents of children who are living with, have died from or survived a life-limiting or life-threatening-condition. The development of the PACPN was based on modification of an existing questionnaire and expert input. In a cross-sectional-design, we assessed reliability and validity for both pediatricians and pediatric nurses. Dimensionality was assessed using principal component analysis (PCA). Cronbach’s alphas were calculated for each subscale. For construct validity, participants were asked to rate an additional question regarding the goal to measure parents’ attitudes towards crying pediatricians/pediatric nurses. We hypothesized that a higher score would have a strong positive correlation with the total score of the PACPN. At the end of the questionnaire, participants were asked to rate and comment the completeness. The developed 25-item questionnaire was completed by 116 parents. The PCA revealed two dimensions: (1) family’s circumstances; (2) personal circumstances of the pediatrician/pediatric nurse. Internal consistency was good (pediatricians,.81–.93; pediatric nurses,.83–.93). The hypothesis regarding construct validity was confirmed (Spearman’s rho =.71–.75). The completeness score was 7.7 (min–max 1–10, SD = 1.51). Conclusion: The PACPN showed good internal consistency and some degree of construct validity. We assume that by adding some items with nuance to the situation and the degree of crying the completeness of the questionnaire will improve. (Table presented.)
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Objectives: To conduct a scoping review to 1) describe findings and determinants of physical functioning in children during and/or after PICU stay, 2) identify which domains of physical functioning are measured, 3) and synthesize the clinical and research knowledge gaps.Data Sources: A systematic search was conducted in PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library databases following the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews guidelines.Study Selection: Two investigators independently screened and included studies against predetermined criteria.Data Extraction: One investigator extracted data with review by a second investigator. A narrative analyses approach was used.Data Synthesis: A total of 2,610 articles were identified, leaving 68 studies for inclusion. Post-PICU/hospital discharge scores show that PICU survivors report difficulties in physical functioning during and years after PICU stay. Although sustained improvements in the long-term have been reported, most of the reported levels were lower compared with the reference and baseline values. Decreased physical functioning was associated with longer hospital stay and presence of comorbidities. A diversity of instruments was used in which mobility and self-care were mostly addressed.CONCLUSIONS: The results show that children perceive moderate to severe difficulties in physical functioning during and years after PICU stay. Longitudinal assessments during and after PICU stay should be incorporated, especially for children with a higher risk for poor functional outcomes. There is need for consensus on the most suitable methods to assess physical functioning in children admitted to the PICU.
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BACKGROUND: The quality standards of the Dutch Society of Intensive Care require monitoring of the satisfaction of patient's relatives with respect to care. Currently, no suitable instrument is available in the Netherlands to measure this. This study describes the development and psychometric evaluation of the questionnaire-based Consumer Quality Index 'Relatives in Intensive Care Unit' (CQI 'R-ICU'). The CQI 'R-ICU' measures the perceived quality of care from the perspective of patients' relatives, and identifies aspects of care that need improvement.METHODS: The CQI 'R-ICU' was developed using a mixed method design. Items were based on quality of care aspects from earlier studies and from focus group interviews with patients' relatives. The time period for the data collection of the psychometric evaluation was from October 2011 until July 2012. Relatives of adult intensive care patients in one university hospital and five general hospitals in the Netherlands were approached to participate. Psychometric evaluation included item analysis, inter-item analysis, and factor analysis.RESULTS: Twelve aspects were noted as being indicators of quality of care, and were subsequently selected for the questionnaire's vocabulary. The response rate of patients' relatives was 81% (n = 455). Quality of care was represented by two clusters, each showing a high reliability: 'Communication' (α = .80) and 'Participation' (α = .84). Relatives ranked the following aspects for quality of care as most important: no conflicting information, information from doctors and nurses is comprehensive, and health professionals take patients' relatives seriously. The least important care aspects were: need for contact with peers, nuisance, and contact with a spiritual counsellor. Aspects that needed the most urgent improvement (highest quality improvement scores) were: information about how relatives can contribute to the care of the patient, information about the use of meal-facilities in the hospital, and involvement in decision-making on the medical treatment of the patient.CONCLUSIONS: The CQI 'R-ICU' evaluates quality of care from the perspective of relatives of intensive care patients and provides practical information for quality assurance and improvement programs. The development and psychometric evaluation of the CQI 'R-ICU' led to a draft questionnaire, sufficient to justify further research into the reliability, validity, and the discriminative power of the questionnaire.
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Introduction: Although some adults with autism spectrum disorder (ASD) require intensive and specialized ASD treatment, there is little research on how these adults experience the recovery process. Recovery is defined as the significant improvement in general functioning compared to the situation prior to treatment. Methods: This qualitative study describes the recovery process from the perspective of adults on the autism spectrum during intensive inpatient treatment. Semi-structured interviews (n = 15) were carried out and analyzed according to the principles of grounded theory. Results: Our results indicate that, given the specific characteristics of autism, therapeutic interventions and goal-oriented work cannot be carried out successfully, and the recovery process cannot begin, if no good working relationship has been established, and if care is not organized in ways that a person on the autism spectrum finds clear and predictable.
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The objective of this study was to determine the feasibility and efficacy of an exercise training program to improve exercise capacity and fatigue level in pediatric patients with end-stage renal disease (ESRD). Twenty children on dialysis intended to perform a 12-week graded community-based exercise program. Exercise capacity and fatigue level were studied; muscle force and health-related quality of life were secondary outcomes. All outcomes were measured at baseline (T = 0) and after intervention (T = 1). Fourteen of the 20 patients (70%) either did not start the program or did not complete the program. Of these patients, seven did not complete or even start the exercise program because of a combination of lack of time and motivational problems. Six patients were not able to continue the program or were unable to do the follow-up measurements because of medical problems. Exercise capacity and muscle strength was higher after the exercise program in the children who completed the training. In conclusion, exercise training is difficult to perform in children with ESRD and is not always feasible in real-life situations for many children with ESRD.
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Abstract: Background Non-compliance to, or drop-out from treatment for childhood ADHD, result in suboptimal outcome. Non-compliance and drop-out may be due to mismatches between patients’ care needs and treatments provided. This study investigated unmet care needs in ADHD patients. Unmet needs were assessed in two different treatment settings (general outpatient setting versus youth-ACT). Youth-ACT treatment is an intensive outreach-oriented treatment for patients with severe psychiatric and psychosocial problems. Comparison of a general outpatient sample with a youth-ACT sample enabled us to assess the influence of severity of psychiatric and psychosocial problems on perceived care needs. Methods Self-reported unmet care needs were assessed among 105 ADHD patients between 6 and 17 years of age in a general outpatient (n = 52) and a youth-ACT setting (n = 53).
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Background: Optimizing transitional care by practicing family-centered care might reduce unplanned events for patients who undergo major abdominal cancer surgery. However, it remains unknown whether involving family caregivers in patients’ healthcare also has negative consequences for patient safety. This study assessed the safety of family involvement in patients’ healthcare by examining the cause of unplanned events in patients who participated in a family involvement program (FIP) after major abdominal cancer surgery. Methods: This is a secondary analysis focusing on the intervention group of a prospective cohort study conducted in the Netherlands. Data were collected from April 2019 to May 2022. Participants in the intervention group were patients who engaged in a FIP. Unplanned events were analyzed, and root causes were identified using the medical version of a prevention- and recovery-information system for monitoring and analysis (PRISMA) that analyses unintended events in healthcare. Unplanned events were compared between patients who received care from family caregivers and patients who received professional at-home care after discharge. A Mann-Whitney U test was used to analyze data. Results: Of the 152 FIP participants, 68 experienced an unplanned event and were included. 112 unplanned events occurred with 145 root causes since some unplanned events had several root causes. Most root causes of unplanned events were patient-related factors (n = 109, 75%), such as patient characteristics and disease-related factors. No root causes due to inadequate healthcare from the family caregiver were identified. Unplanned events did not differ statistically (interquartile range 1–2) (p = 0.35) between patients who received care from trained family caregivers and those who received professional at-home care after discharge. Conclusion: Based on the insights from the root-cause analysis in this prospective multicenter study, it appears that unplanned emergency room visits and hospital readmissions are not related to the active involvement of family caregivers in surgical follow-up care. Moreover, surgical follow-up care by trained family caregivers during hospitalization was not associated with increased rates of unplanned adverse events. Hence, the concept of active family involvement by proficiently trained family caregivers in postoperative care appears safe and feasible for patients undergoing major abdominal surgery.
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Challenging behaviour, such as aggression towards oneself, others, or objects, arises in interaction with the environment and may prevent individuals from participating in society and compromise their quality of life (QoL). Literature suggests that architects can contribute to prevention, by influencing challenging behaviour before rather than after its occurrence. By conducting a case study at a very-intensive-care facility, we explore how architecture can contribute to the QoL of intellectually impaired (and autistic) individuals showing challenging behaviour. The case study is based on interviews with residents and care providers, and direct observations of their daily life. Preliminary findings confirm the relevance of architecture in influencing challenging behaviour. They suggest that the residents are dependent on the (visual and auditory) connection with the care provider. Also, care providers confirm the importance of this connection for the quality of the care they provide. At the same time, residents may experience anxiety triggered by fellow residents and their challenging behaviour. Residents may also feel stress when faced with unexpected situations and this may lead to an onset of challenging behaviour. Sensory sensitivity, specifically to noise and heat is also relevant for their QoL.The findings will be further substantiated through multiple triangulation with available data (personal files, incident reports, photographs). Future research, specifically focused on intellectually impaired individuals showing challenging behaviour, is needed to better understand the similarities and differences between their needs and the needs of autistic people.
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Objective: The participation of students from both undergraduate medical education (UGME) and postgraduate medical education (PGME) in independent patient care contributes to the development of knowledge, skills and the professional identity of students. A continuing collaboration between students and their preceptor might contribute to opportunities for students to independently provide patient care. In this systematic review, we aim to evaluate whether longitudinal training models facilitate the independent practice of students and what characteristics of longitudinal training models contribute to this process. Method: This systematic review was performed according to the PRISMA guidelines. In May 2020, we performed a search in three databases. Articles evaluating the impact of longitudinal training models on the independent practice of students from both UGME and PGME programmes were eligible for the study. A total of 68 articles were included in the study. Quality of the included studies was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD).Results: Both UGME and PGME students in longitudinal training models are more frequently allowed to provide patient care independently when compared with their block model peers, and they also feel better prepared for independent practice at the end of their training programme. Several factors related to longitudinal training models stimulate opportunities for students to work independently. The most important factors in this process are the longitudinal relationships with preceptors and with the health care team. Conclusion: Due to the ongoing collaboration between students and their preceptor, they develop an intensive and supportive mutual relationship, allowing for the development of a safe learning environment. As a result, the professional development of students is fostered, and students gradually become part of the health care team, allowing them the opportunity to engage in independent patient care.
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