Perioperative Health Interventions in Children With Chronic Neuromuscular Conditions Undergoing Major Musculoskeletal Surgery: A Scoping Review.

BACKGROUND AND OBJECTIVES: Children with chronic neuromuscular conditions (CCNMC) have many coexisting conditions and often require musculoskeletal surgery for progressive neuromuscular scoliosis or hip dysplasia. Adequate perioperative optimization may decrease adverse perioperative outcomes. The purpose of this scoping review was to allow us to assess associations of perioperative health interventions (POHI) with perioperative outcomes in CCNMC. METHODS: Eligible articles included those published from January 1, 2000 through March 1, 2022 in which the authors evaluated the impact of POHI on perioperative outcomes in CCNMC undergoing major musculoskeletal surgery. Multiple databases, including PubMed, Embase, Cumulative Index of Nursing and Allied Health Literature, Web of Science, the Cochrane Library, Google Scholar, and ClinicalTrials.gov, were searched by using controlled vocabulary terms and relevant natural language keywords. Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines were used to perform the review. A risk of bias assessment for included studies was performed by using the Risk of Bias in Non-randomized Studies of Interventions tool. RESULTS: A total of 7013 unique articles were initially identified, of which 6286 (89.6%) were excluded after abstract review. The remaining 727 articles' full texts were then reviewed for eligibility, resulting in the exclusion of 709 (97.5%) articles. Ultimately, 18 articles were retained for final analysis. The authors of these studies reported various impacts of POHI on perioperative outcomes, including postoperative complications, hospital length of stay, and hospitalization costs. Because of the heterogeneity of interventions and outcome measures, meta-analyses with pooled data were not feasible. CONCLUSIONS: The findings reveal various impacts of POHI in CCNMC undergoing major musculoskeletal surgery. Multicenter prospective studies are needed to better address the overall impact of specific interventions on perioperative outcomes in CCNMC.

The Clinical Definition of Children With Medical Complexity: A Modified Delphi Study.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) comprise a subgroup of children with severe chronic diseases. A conceptual definition for CMC has been formulated, but there is no agreement on criteria to fulfill each of the 4 proposed domains: diagnostic conditions, functional limitations, health care use, and family-identified needs. Our objective with this study was to identify a standardized definition of CMC. METHODS: Through a scoping review of the CMC literature, we identified potential criteria to fulfill each domain. These were incorporated into an electronic survey that was completed by a geographic and professionally varied panel of 81 American and Canadian respondents with expertise in managing CMC (response rate 70%) as part of a 4-iteration Delphi procedure. Respondents were asked to vote for the inclusion of each criterion in the definition, and for those with quantitative components (eg, hospitalization rates), to generate a consensus threshold value for meeting that criterion. The final criteria were analyzed by a committee and collapsed when situations of redundancy arose. RESULTS: Of 1411 studies considered, 132 informed 55 criteria for the initial survey, which was presented to 81 respondents. Consensus for inclusion was reached on 48 criteria and for exclusion on 1 criterion. The committee collapsed those 48 criteria into 39 final criteria, 1 for diagnostic conditions, 2 for functional limitations, 13 for health care use, and 23 for family needs. CONCLUSIONS: These results represent the first consensus-based, standardized definition of CMC. Standardized identification is needed to advance understanding of their epidemiology and outcomes, as well as to rigorously study treatment strategies and care models.

Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.

BACKGROUND: Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. METHODS: We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. RESULTS: One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. CONCLUSIONS: In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

Blenderized tube feedings: Practice recommendations from the American Society for Parenteral and Enteral Nutrition.

Prior to the 1970s, blending food and liquids and putting them through an enteral access device (EAD) was the most common form of enteral nutrition (EN). However, in the 1970s, blenderized tube feedings (BTFs) became less popular due to the emergence of modern commercial enteral formulas (CEFs). Recently, a cultural shift toward consuming a natural diet, consisting of whole foods, has led to a resurgence in the use of BTF. The increasing use of BTF in a variety of patient care settings identifies a need for practice recommendations that provide guidance for nutrition professionals and patients. Members of the American Society for Parental and Enteral Nutrition (ASPEN) Enteral Nutrition Committee identified salient clinical questions concerning BTF, conducted a comprehensive literature search, and subsequently developed practice recommendations pertaining to the use of BTF. This paper was approved by the ASPEN 2022-2023 Board of Directors.

Evaluation of a computer game-assisted rehabilitation program for manual dexterity of children with cerebral palsy: Feasibility randomized control trial.

BACKGROUND: There is a need for innovation to improve the engagement and compliance of rehabilitation programs for children with upper extremity (UE) motor impairments due to cerebral palsy (CP); a computer games-based rehabilitation platform (GRP) was developed to address this need. The GRP provides engaging task-specific exercises targeting manual dexterity (object handling and manipulation). OBJECTIVE: To evaluate the therapeutic value and treatment effect size of an exercise program using the GRP in children with CP. METHODS: A total of 63 children with CP, aged 4 to 10 years, were recruited. The Peabody Developmental Motor Scale-2 (PDMS-2) Grasp and Visual-Motor Integration (VMI) subscores and Computer game-based Upper Extremity (CUE) assessment of manual dexterity were used to assess participants before and after a 16-week intervention program, delivered three times per week. The experimental group (XG) received a computer games-based exercise program targeting object manipulation tasks. The active control arm (CG) consisted of task-specific training similar to the tasks used in constrained induced movement therapy. RESULTS: There were only a few dropouts during the 16-week program, and compliance was high. Both groups showed significant improvements with medium to large effect sizes. Improvements in the PDMS-2 Grasp and VMI subscores observed in the XG were significantly greater than that in the CG. There were significant improvements (p < .01) in PDMS-2 grasp and VMI subscores for XG with moderate to large effect sizes (0.5-0.8). For CG, the Grasp and VMI subscores did improve but these changes were not statistically significant. There was a significant improvement observed in the majority of CUE object manipulation test scores for XG (p < .01) with moderate to large effect sizes (0.50-1.2) Although CG did show improvements in all CUE object manipulation test scores, the changes did not reach statistical significance (p < .01). CONCLUSION: This study demonstrates the utility of the GRP to practice a broad range of object manipulation tasks in children with CP. The present findings are positive and support further research and development. The long-term effects of the GRP program in children with CP will need to be confirmed in a future randomized controlled trial. In addition to measures of structure and function, future trials should also include outcome measures such as health-related quality of life and level of participation to validate the findings.

Evaluation of methods used to verify nasogastric feeding tube placement in hospitalized infants and children - A follow-up study.

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.

Reliability and validity of a computer game-based tool of upper extremity assessment for object manipulation tasks in children with cerebral palsy.

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.

Parents' Perspectives on a Computer Game-Assisted Rehabilitation Program for Manual Dexterity in Children With Cerebral Palsy: Qualitative Analysis of Expectations, Child Engagement, and Benefits.

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.

Transitioning From Nasogastric Feeding Tube to Gastrostomy Tube in Pediatric Patients: A Survey on Decision-Making and Practice.

BACKGROUND: Tube feeding via nasogastric tubes (NGTs) and gastrostomy tubes (GTs) is a common practice for children unable to meet their nutrition needs by oral feeding alone. There is currently a lack of evidence-based guidance specific for the process of transitioning from an NGT to GT as a longer-term enteral access device. Uncertainty in the literature about feeding tube choices, practices, and transitions requires clinicians to draw on incomplete and sometimes conflicting evidence, personal experience, economic realities, and compassion to deliver supportive child-centered care. METHODS: The ASPEN Enteral Nutrition Task Force Pediatric Work Group designed a survey to explore current practice of enteral access device safety and use among pediatric clinicians practicing in the US and Canada. The survey aimed to define time frames, parameters, and decision points to guide clinicians and families in the transition from NG to GT feeding. RESULTS: 258 clinicians, 55% practicing in an inpatient setting, 17% in-home patient setting, and 28% practicing in both inpatient and outpatient setting. 22% were physicians, 42% were dietitians, 32% were nurses or advanced practice nurses, 2% were pharmacists. The most common feeding tubes used were NGTs followed by GTs. Majority of respondents indicated that they did not have a specific timeline for when an NGT should be changed to a GT. Highest ranked patient factors or clinical considerations prior to recommending changing from an NGT to a GT were exceeding the duration for temporary feeding or the need for an extended duration of tube feeding. Highest physician barriers to GT placement were the reluctance for referral from primary care doctors for GT placement. Majority of respondents reported the use of NGTs for enteral access at home and that parents were taught how to place the NGTs for home use but without consistently being taught the use of pH paper to verify NGT tip location or being provided with the pH paper to perform this task at home. CONCLUSIONS: This survey is the first step to address the knowledge gap surrounding feeding tube choices by ascertaining the current standard of practice regarding enteral access devices and appropriate timing of transitioning from NGT to GT feeding. The results highlight current practice variability and concerns. Information from the survey was used to formulate a decision tree to guide the transition of NGT to GT feeding that nutrition support professionals can use to advocate for best practices in their hospital and community settings.

BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay.

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether "health coaching", a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays. Method/Design: A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6-9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months). Discussion: This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays. Trial Registration: ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.

Pediatric Nasogastric Tube Placement and Verification: Best Practice Recommendations From the NOVEL Project.

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.

Use of Nasogastric Feeding Tubes for Children at Home: A Template for Caregiver Education.

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.

The Effectiveness of a Computer Game-Based Rehabilitation Platform for Children With Cerebral Palsy: Protocol for a Randomized Clinical Trial.

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).

The embodied spaces of children with complex care needs: Effects on the social realities and power negotiations of families.

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.

Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs.

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.

The importance of good nutrition in children with cerebral palsy.

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.

Is aspiration during swallowing more common in Canadian children with indigenous heritage?

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.