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Background Nasogastric (NG) feeding tubes are used to deliver nutrition, hydration, and medications to hospitalized infants and children but the ongoing use of non-evidence-based practice (EBP) methods to confirm NG tube (NGT) placement has been associated with adverse patient events. Methods A study was undertaken to ascertain if practice changes have occurred since findings from a previous study were published by the New Opportunities for Verification of Enteral tube Location (NOVEL) project. The NOVEL project was an initiative of the American Society of Parenteral and Enteral Nutrition (ASPEN). A survey was distributed to member organizations participating in the NOVEL project. Respondents were also asked if and when a change in practice occurred in the policy for NGT placement verification, if there was variation within the institutional units and if there were barriers to practice change. Findings Respondents were primarily nurses (205/245) from 166 institutions that provided care to combined adult/pediatric/neonatal (122/166) patients. Respondents indicated a radiograph (64%) or pH measurement (24%) were best practice but in actual practice 42% use pH measurement and 23% use a radiograph to verify NGT placement. There was variability within institutions, with the Neonatal Intensive Care Unit (NICU) most often using aspiration and direct eye visualization to verify placement and the other units within the institutions using EBP method(s). Discussion Comparing these results to previous work by the NOVEL project shows an increase toward the use of EBP method(s) to verify NGT placement verification. Application to practice This study demonstrates variation within units at the same facility using methods unsupported by the literature, demonstrating that many centers still rely on non-EBP methods of NG placement confirmation, despite cautions issued by many major healthcare organizations.

BACKGROUND Children with motor impairments affecting the upper extremity benefit from task-specific therapy, such as constraint-induced movement therapy. However, there is a need to improve engagement and compliance with task-specific exercise programs that target manual dexterity for children with cerebral palsy (CP). A computer game–based rehabilitation (GRP) platform was developed that combines fine manipulation and gross movement exercises with engaging game activities appropriate for young children with CP. OBJECTIVE The objectives of this qualitative analysis were to compare parents’ perspectives and opinions about expectations, challenges, and benefits between 2 interventions. METHODS A mixed methods, randomized controlled trial (RCT) was conducted to examine the feasibility and estimate the effect size of 2 exercise programs for rehabilitation of manual dexterity of children with CP using either GRP or conventional therapy. Parents of 26 of the children who completed the GRP program (n=33) and parents of 15 of the children who completed the conventional therapy program (n=27) participated in the interviews. A general conductive approach was used to analyze the data recorded during the parents’ interviews. RESULTS Five themes captured the range of the parent’s experiences, viewpoints, and ideas: (1) parents’ expectations, (2) child’s engagement with therapy, (3) positive effects of the interventions, (4) challenges, and (5) improving the protocol. CONCLUSIONS Parents from both groups recognized that their expectations related to improving children’s object handling and manipulation skills including participation in activities of daily life were addressed during the 16-week therapy program. Parents perceived a change in the children’s level of independence in their daily tasks at home, school, and leisure activities. CLINICALTRIAL ClinicalTrials.gov NCT02728375; https://clinicaltrials.gov/ct2/show/NCT02728375

Introduction A computer game-based upper extremity (CUE) assessment tool is developed to quantify manual dexterity of children with Cerebral Palsy (CP). The purpose of this study was to determine test-retest reliability of the CUE performance measures (success rate, movement onset time, movement error, and movement variation) and convergent validity with the Peabody Developmental Motor Scale version 2 (PDMS-2) and the Quality of Upper Extremity Skills Test (QUEST). Methods Thirty-five children with CP aged four to ten years were tested on two occasions two weeks apart. Results CUE performance measures of five chosen object manipulation tasks exhibited high to moderate intra-class correlation coefficient (ICC) values. There was no significant difference in the CUE performance measures between test periods. With few exceptions, there was no significant correlation between the CUE performance measures and the PDMS-2 or the QUEST test scores. Conclusions The high to moderate ICC values and lack of systematic errors indicate that the CUE assessment tool has the ability to repeatedly record reliable performance measures of different object manipulation tasks. The lack of a correlation between the CUE and the PDMS-2 or QUEST scores indicates that performance measures of these assessment tools represent distinct attributes of manual dexterity.

The placement of a nasogastric tube (NGT) in a pediatric patient is a common practice that is generally perceived as a benign bedside procedure. There is potential risk for NGT misplacement with each insertion. A misplaced NGT compromises patient safety, increasing the risk for serious and even fatal complications. There is no standardized method for verification of the initial NGT placement or reverification assessment of NGT location prior to use. Measurement of the acidity or pH of the gastric aspirate is the most frequently used evidence-based method to verify NGT placement. The radiograph, when properly obtained and interpreted, is considered the gold standard to verify NGT location. However, the uncertainty regarding cumulative radiation exposure related to radiographs in pediatric patients is a concern. To minimize risk and improve patient safety, there is a need to identify best practice and to standardize care for initial and ongoing NGT location verification. This article provides consensus recommendations for best practice related to NGT location verification in pediatric patients. These consensus recommendations are not intended as absolute policy statements; instead, they are intended to supplement but not replace professional training and judgment. These consensus recommendations have been approved by the American Society for Parental and Enteral Nutrition (ASPEN) Board of Directors.

Background Children with motor impairments affecting the upper extremity benefit from task-specific therapy, such as constraint-induced movement therapy. However, there is a need to improve engagement and compliance with task-specific exercise programs that target manual dexterity for children with cerebral palsy (CP). A computer game–based rehabilitation (GRP) platform was developed that combines fine manipulation and gross movement exercises with engaging game activities appropriate for young children with CP. Objective The objectives of this qualitative analysis were to compare parents’ perspectives and opinions about expectations, challenges, and benefits between 2 interventions. Methods A mixed methods, randomized controlled trial (RCT) was conducted to examine the feasibility and estimate the effect size of 2 exercise programs for rehabilitation of manual dexterity of children with CP using either GRP or conventional therapy. Parents of 26 of the children who completed the GRP program (n=33) and parents of 15 of the children who completed the conventional therapy program (n=27) participated in the interviews. A general conductive approach was used to analyze the data recorded during the parents’ interviews. Results Five themes captured the range of the parent’s experiences, viewpoints, and ideas: (1) parents’ expectations, (2) child’s engagement with therapy, (3) positive effects of the interventions, (4) challenges, and (5) improving the protocol. Conclusions Parents from both groups recognized that their expectations related to improving children’s object handling and manipulation skills including participation in activities of daily life were addressed during the 16-week therapy program. Parents perceived a change in the children’s level of independence in their daily tasks at home, school, and leisure activities. Trial Registration ClinicalTrials.gov NCT02728375; https://clinicaltrials.gov/ct2/show/NCT02728375

SummaryBackground Participating in everyday life is essential to the healthy development and emotional well-being of children. However, little is known about siblings of children with complex care needs (CCN), and their perspectives and experiences of participating in everyday life. The aim of this paper is to present research findings that add to our understanding of how siblings of children with CCN view and experience participation in everyday life. Methods To arrive at a detailed and accurate understanding of the siblings' perspectives and experiences, we used the qualitative research design of ethnography. Sixteen siblings (seven brothers, nine sisters) of children with CCN were recruited. The siblings ranged in age between 7 and 25 years, with a mean age of 14 years. All siblings took part in opened-ended interviews and completed ecomaps to describe how they participate. Five siblings also took part in the photovoice method. Analysis involved several iterative steps, congruent with ethnography. Results Four main themes emerged as follows: (1) participation is about being part of a group; (2) it feels good; (3) I love my sibling but…; and (4) promoting participation. Siblings of children with CCN identified challenges to participation and also described ways that they participate that relate to the care of their sibling. Conclusions Siblings prioritized the relationship with their sisters and brothers with CCN in their life, and a great deal of their participation was chosen with their sibling in mind. Sibling-to-sibling relationships were distinct and meaningful and, as a result, participation was always done mindfully and with the family needs at the forefront. Nonetheless, clinicians caring for children with CCN must keep in mind the challenges that siblings of children with CCN experience and provide strategies to siblings that will help to promote their participation in everyday life.

The placement of a nasogastric tube (NGT) in a pediatric patient is a common practice that is generally perceived as a benign bedside procedure. There is potential risk for NGT misplacement with each insertion. A misplaced NGT compromises patient safety, increasing the risk for serious and even fatal complications. There is no standardized method for verification of the initial NGT placement or reverification assessment of NGT location prior to use. Measurement of the acidity or pH of the gastric aspirate is the most frequently used evidence-based method to verify NGT placement. The radiograph, when properly obtained and interpreted, is considered the gold standard to verify NGT location. However, the uncertainty regarding cumulative radiation exposure related to radiographs in pediatric patients is a concern. To minimize risk and improve patient safety, there is a need to identify best practice and to standardize care for initial and ongoing NGT location verification. This article provides consensus recommendations for best practice related to NGT location verification in pediatric patients. These consensus recommendations are not intended as absolute policy statements; instead, they are intended to supplement but not replace professional training and judgment. These consensus recommendations have been approved by the American Society for Parental and Enteral Nutrition (ASPEN) Board of Directors.

Poor nutritional status, which is common in children with cerebral palsy (CP), has generated considerable interest because of its wide-ranging impact on the children's health and well-being. Understanding the causes of poor nutrition, and the appropriate measurements required to interpret the nutritional status in children with CP, are integral to developing appropriate nutritional intervention strategies. Focusing attention on improving nutrition early in the lives of children with CP affords families and care providers with a unique opportunity for intervention, which may result in better outcomes for the children.

There is a lack of knowledge on the part of caregivers who need to place nasogastric (NG) tubes in children for enteral nutrition therapy. This article provides the rationale, best practices, and a template for caregiver education. Canadian and Australian programs have excellent patient education materials. They have shared these step-by-step procedures for healthcare professionals to provide to caregivers to whom they are teaching placement and care of NG tubes.

This paper presents research findings that advance knowledge around the power and agency families with children with complex care needs (CCN). Our conceptual framework uses concepts from geography towards situating the experiences and social realities of family carers within the 'embodied space of care'. The data originate from a longitudinal qualitative study of Canadian families with children with CCN. Findings reveal that interactions and decision-making processes relating to health and everyday life were complex and socially interconnected, and emphasize the need for provisions for family-based decision-making and enhanced social inclusion of families and the importance of the renegotiation of power.

While many factors that contribute to the occurrence of lower respiratory tract infections (LRTI) in Canadian indigenous children have been described, the role of aspiration during swallowing has not been explored in these children. Because of an increase in referrals of indigenous children from our catchment area (Manitoba, North Western Ontario, and Nunavut) for assessment of aspiration during swallowing, we retrospectively reviewed the clinical records of 325 consecutive children undergoing videofluoroscopic swallowing studies (VFSS) to evaluate which factors, including indigenous heritage and LRTI, were associated with aspiration during swallowing. Our sample had an overrepresentation of indigenous children (35% compared to 23% in the catchment area). These children were more likely to aspirate during swallowing (P = 0.001) and to have experienced an LRTI prior to the VFSS (P = 0.000). When separating the children who aspirated into two groups based on indigenous heritage, the indigenous children were more likely to have had an LRTI (P = 0.028) than the other children in the sample. With logistic regression analysis, significant correlations between indigenous heritage, LRTI (P = 0.000), and aspiration (P = 0.009) were found. When aspiration during swallowing was the factor of interest, it correlated with both LRTI (P = 0.001) and the presence of congested upper airway noises after eating (P = 0.000). These upper airway noises were strongly associated with aspiration in indigenous children (P = 0.004). While prospective data are required to determine if the correlations seen in this retrospective review will remain robust, indigenous children were more likely to aspirate during swallowing and have LRTI in this sample. Whether aspiration during swallowing is related to environmental, ethnic, or biological factors in indigenous children remains to be determined, but the association between aspiration and congested upper airway noises after eating may assist in the early diagnosis of aspiration during swallowing, and thereby enable timely intervention to decrease aspiration risk in children already at risk of repeated LRTI due to a number of other confounding factors. Pediatr Pulmonol. 2011; 46: 1240–1246. © 2011 Wiley Periodicals, Inc.

Background Increased numbers of children with chronic illnesses and/or disabilities who have complex care needs are living at home. Along with the transfer of care to the home setting, parents assume the primary responsibility of their child’s complex care needs. Accordingly, it becomes even more important to understand the evolving roles and challenges faced by parents of children with complex care needs in order to better support them. The aim of this paper is to present research findings that add to our understanding of the roles parents assume in parenting their children with complex care needs. Methods To arrive at a detailed and accurate understanding of families’ perspectives and experiences, the qualitative research design of ethnography was used. In total, 68 parents from 40 families were recruited. Data collection strategies included ethnographic methods of interviewing and photovoice. Several levels of analysis generated a sociocultural theme with subthemes representing how parents experienced raising children with complex care needs within the context of their life situations. Results Intense parenting as the overarching theme refers to the extra efforts parents had to commit to in raising their children with complex care needs. Parenting was described as labour-intensive, requiring a readiness to provide care at any time. This left parents with minimal time for addressing any needs and tasks not associated with caring for their child. The main theme is supported by four sub-themes: 1) the good parent; 2) more than a nurse; 3) there’s just not enough; 4) it takes a toll on the health of parents. Conclusions Overall, parents of children with complex care needs take on more roles as well as work more intensely at these roles than parents of healthy children. This, in turn, has led to the need for additional supports and resources for parents. However, to date, parents of children with complex care needs are still lacking adequate services and supports necessary to help them in their role of intense parenting. The findings sensitize professionals to the issues confronted by parents caring for children with complex care needs. Implications for further research and clinical practice are discussed.

Background: It is difficult to engage young children with cerebral palsy (CP) in repetitive, tedious therapy. As such, there is a need for innovative approaches and tools to motivate these children. We developed the low-cost, computer game-based rehabilitation platform CGR that combines fine manipulation and gross movement exercises with attention and planning game activities appropriate for young children with CP. Objective: The objective of this study is to provide evidence of the therapeutic value of CGR to improve upper extremity (UE) motor function for children with CP. Methods: This randomized controlled, single-blind, clinical trial with an active control arm will be conducted at 4 sites. Children diagnosed with CP between the ages of 4 and 10 years old with moderate UE impairments and fine motor control abnormalities will be recruited. Results: We will test the difference between experimental and control groups using the Quality of Upper Extremity Skills Test (QUEST) and Peabody Developmental Motor Scales, Second Edition (PDMS-2) outcome measures. The parents of the children and the therapist experiences with the interventions and tools will be explored using semi-structured interviews using the qualitative description approach. Conclusions: This research protocol, if effective, will provide evidence for the therapeutic value and feasibility of CGR in the pediatric rehabilitation of UE function. Trial Registration: Clinicaltrials.gov NCT02728375; http:https://clinicaltrials.gov/ct2/show/NCT02728375 (Archived by WebCite at http://www.webcitation.org/6qDjvszvh) [JMIR Res Protoc 2017;6(5):e93]

A simple, non-invasive acoustical method is developed to detect respiratory phases in relationship to swallows without the direct measurement of airflow. In 21 healthy subjects (4-51 years) breath sounds are recorded at the trachea and at five different recording locations at the chest wall, with simultaneous recording of airflow by a pneumotachograph. The chest signal with the greatest inspiratory-expiratory power difference ('best location') is either in the mid-clavicular line in the second interspace on the left or third interspace on the right. Using the 'best location' on the chest wall and the tracheal signal, a phase detection algorithm is developed and achieves 100% accuracy in the estimation of respiratory phases without using the measured airflow signal. Thus, acoustically monitoring breaths and swallows holds promise as a non-invasive and reliable assessment tool in the study of swallowing dysfunction.

Spinal braces such as the Soft Boston Orthosis (SBO) help stabilize scoliosis and improve sitting, positioning, and head control in individuals with cerebral palsy. However, their impact on pulmonary mechanics in this population has not been studied. We examined the effect of a Soft Boston Orthosis on the pulmonary mechanics and gas exchange in 12 children and young adults (5-23 years of age) with severe cerebral palsy. Pulmonary resistance, compliance, tidal volume, minute ventilation, work of breathing, oxygen saturation, and end-tidal CO2 tension were measured with the subjects seated both with and without the orthosis and in the supine position without the orthosis. There were no significant differences in the measured parameters when comparing subjects with and without their orthoses in the sitting or in the supine position. As would be expected in individuals with severe cerebral palsy, pulmonary resistance was increased (7.33 cm H2O/L/s) and compliance was decreased (0.12 L/cm H2O) compared to reported normal values. Work of breathing was greatest in the sitting position without the orthosis (1.2 dynes/cm), suggesting that the improved positioning achieved with the orthosis may decrease the work of breathing. We conclude that the application of a Soft Boston Orthosis does not impact negatively on pulmonary mechanics and gas exchange in young people with severe cerebral palsy.

While many factors that contribute to the occurrence of lower respiratory tract infections (LRTI) in Canadian indigenous children have been described, the role of aspiration during swallowing has not been explored in these children. Because of an increase in referrals of indigenous children from our catchment area (Manitoba, North Western Ontario, and Nunavut) for assessment of aspiration during swallowing, we retrospectively reviewed the clinical records of 325 consecutive children undergoing videofluoroscopic swallowing studies (VFSS) to evaluate which factors, including indigenous heritage and LRTI, were associated with aspiration during swallowing. Our sample had an overrepresentation of indigenous children (35% compared to 23% in the catchment area). These children were more likely to aspirate during swallowing (P = 0.001) and to have experienced an LRTI prior to the VFSS (P = 0.000). When separating the children who aspirated into two groups based on indigenous heritage, the indigenous children were more likely to have had an LRTI (P = 0.028) than the other children in the sample. With logistic regression analysis, significant correlations between indigenous heritage, LRTI (P = 0.000), and aspiration (P = 0.009) were found. When aspiration during swallowing was the factor of interest, it correlated with both LRTI (P = 0.001) and the presence of congested upper airway noises after eating (P = 0.000). These upper airway noises were strongly associated with aspiration in indigenous children (P = 0.004). While prospective data are required to determine if the correlations seen in this retrospective review will remain robust, indigenous children were more likely to aspirate during swallowing and have LRTI in this sample. Whether aspiration during swallowing is related to environmental, ethnic, or biological factors in indigenous children remains to be determined, but the association between aspiration and congested upper airway noises after eating may assist in the early diagnosis of aspiration during swallowing, and thereby enable timely intervention to decrease aspiration risk in children already at risk of repeated LRTI due to a number of other confounding factors.

Children of the First Nations and Inuit in Canada have a high propensity for lower respiratory tract infections. Overcrowding, poor housing, passive smoke exposure, and lack of breast feeding (Martens P, Bond R, Jebamani L, Burchill C, et al. http://www.umanitoba.ca/centres/mchp/reports/pdfs/rfn_pdfs/rfn_report.pdf.; MacMillan H, Walsh C, Jamieson E, Crawford A, Boyle M. http://www.hcsc.gc.ca/fnihbdgspni/fnihb/aboriginalhealth/reports_summaries/regional_survey_ch1.pdf.; Wardman AE, Khan NA. Int J Circumpolar Health 2004;63:81–92) have been cited as important contributing factors in the occurrence of lower respiratory tract infections. However, aspiration during swallowing has thus far not been considered as a co-factor in the occurrence of lower respiratory tract infections in these children. We present a retrospective case series of seven typically developing children of the Canadian First Nations and Inuit, in whom aspiration during swallowing was detected in the course of investigating associations with recurrent lower respiratory tract infections. None of the children had any of the known risk factors for aspiration during swallowing such as developmental variation, prematurity, neuromotor problems, or anatomic abnormalities of the upper aerodigestive tract. We speculate that aspiration during swallowing in typically developing children may be an important, previously unrecognized co-factor in the occurrence of lower respiratory tract infections, particularly in the communities of the Canadian First Nations and Inuit. Further prospective studies will be needed to determine whether aspiration during swallowing represents an independent risk factor for the occurrence of lower respiratory tract infections in these children. Pediatr Pulmonol. 2006, 41:912–915. © 2006 Wiley-Liss, Inc.

In this observational pilot study, we investigated the effect of swallowing pudding and liquids of different viscosity on the breath-swallow pattern of young people with quadriparetic cerebral palsy (CP) and normal controls. A noninvasive acoustical technique was used to monitor breaths and swallows while the individuals were drinking thin and thick liquids and consuming pudding. The results showed that subjects with CP had a significantly higher rate of post-swallow inspiration than controls when they were drinking thin liquid but not when they were consuming thick liquid or pudding. Subjects with CP had greater variability and duration of deglutition apnea than controls. Whether the differences seen in breath-swallow pattern and deglutition apnea in young people with CP contribute to aspiration risk remains to be determined. Further clarification of these results by a carefully controlled study of individuals with cerebral palsy undergoing concurrent videofluoroscopic swallowing evaluation and acoustical monitoring of the breath-swallow pattern is required to verify these preliminary results and assess their clinical applicability.

Detection of respiratory phases by airflow measurement has been used in swallowing and respiration studies. However, applying the traditional airflow measurement techniques in studies on children with significant neurological impairments is very difficult and may hamper the entire assessment. This paper proposes a noninvasive method based on the use of respiratory sounds as an alternative technique of airflow measurement. Respiratory sounds were recorded from 11 healthy children and 6 healthy adults with accelerometers placed over trachea and five locations of the anterior chest. The average power spectra of known inspiration and expiration were calculated for each signal. The best recording site on the chest was determined by the greatest difference in average power between respiratory phases. The best recording site was found on the left side for 69% and on the right side for 31% of our subjects' population. A custom written program used the sound signal from trachea and the best site on the chest to detect the respiratory phases. The results were compared with airflow, which was measured simultaneous to the breath sounds, and showed a reliable match for the detected phases.

Regardless of the underlying cause of a child's developmental disability, a similar constellation of associated medical conditions may occur. Successful management approaches in children with developmental disabilities are generally interdisciplinary, frequently involving a variety of medical and surgical disciplines, allied health professionals, and the child's family. Pharmacologic intervention is an integral aspect of the management plan, but consideration must be given both to the possible effects of the medications on a child's growth and development, and to the avoidance of adverse drug interactions and reactions.

Dr Haruda suggests that deficient somatic growth in children with severe cerebral palsy may be the consequence of "bilateral hemiatrophy." This concept is an attractive potential cause, but basic physiologic mechanisms remain elusive. The validity of linear growth measurements in our study is at issue in Dr Fidone's correspondence. All measurements of children obtained in this study were performed by several trained staff of the cerebral palsy service at Gillette Children's Hospital. We acknowledge the difficulties in securing reliable measurement in children with skeletal deformity, but the large majority of children were young and did not have fixed contractures.