BackgroundIncreased 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.MethodsTo 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.ResultsIntense 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.ConclusionsOverall, 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 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.

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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.

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.

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.

Aim To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. Method A cross‐sectional mixed‐method study design was used. Researchers (n=18) and patient‐partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic‐based approach were used to analyse the data. Results For both study groups, high agreement, with responses largely ranging between ‘agree’ to ‘strongly agree’, was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient‐oriented methodology. Patient‐partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. Interpretation The benefits and challenges of applying patient‐oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.

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 H20/L/s) and compliance was decreased (0.12 L/cm H20) 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. Pediatr Pulmonol. 1999; 28:53–58. © 1999 Wiley‐Liss, Inc.