Autism Spectrum Disorder and the Child\u27s Weight–Related Behaviors: A Parents\u27 Perspective

Purpose To explore parent perspectives of how the attributes of their child\u27s autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent\u27s perception of the healthcare providers (HCP) influence on these weight-related behaviors. Design and method We conducted and audio-recorded telephone interviews with parents of children with ASD (n = 8) using a structured question guide. Data were transcribed and thematic analysis was conducted. Issues surrounding weight-related behaviors and parental strategies used were reported. Results Two overarching themes with eight subthemes emerged: (1) Challenges related to features of ASD (subthemes included fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects) and (2) Challenges related to the care of children with ASD (subthemes included lack of individualized care planning, picking your battles and the impact of ASD on family). Conclusion Strategies extracted from the parent narratives promoted both healthy and unhealthy weight-related behaviors. The key finding in this study is that some parents did not follow HCP guidance when they perceived that the HCP did not understand their particular situation. Practice Implications Implementation of healthy weight-related behaviors can be optimized when providers consider the child\u27s challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths

Body Composition Measurement in Children with Cerebral Palsy, Spina Bifida and Spinal Cord Injury: A Systematic Review of the Literature

Pediatric obesity is a major health concern that has an increased prevalence in children with special needs. In order to categorize a child’s weight, an assessment of body composition is needed. Obtaining an accurate body composition measurement in children with special needs has many challenges associated with it. This perplexing scenario limits the provider’s ability to screen, prevent and treat an abnormal weight status in this vulnerable population. This systematic review summarizes common methods of body composition measurements, their strengths and limitations and reviews the literature when measurements were used in children with cerebral palsy, spina bifida and spinal cord injury. Following PRISMA guidelines, 222 studies were identified. The application of the inclusion and exclusion criteria yielded a final sample of nine studies included in this review. Overall, articles reinforced the inconsistencies of body composition measurement and methodology when used with children with special needs. Concerns include small sample sizes, the need to validate prediction equations for this population, and the lack of controlled trials and reporting of measurement methodology. Healthcare providers need to be aware of the complexities associated with measuring body composition in children with special needs and advocate for further testing of these measurements. Additional studies addressing the reliability and validity of these measures are needed to facilitate appropriate health promotion in children

Total Energy Expenditure and Body Composition of Children with Developmental Disabilities

Background Obesity prevalence is increased in children with developmental disabilities, specifically in children with spina bifida and Down syndrome. Energy expenditure, a critical aspect of weight management, has been extensively studied in the typically developing population, but not adequately studied in children with developmental disabilities. Objective Determine energy expenditure, fat-free mass and body fat percentile and the impact of these findings on recommended caloric intake in children with spina bifida and Down syndrome. Methods/Measures This pilot study included 36 children, 18 with spina bifida, 9 with Down syndrome and 9 typically developing children. Half of the children with spina bifida were non-ambulatory. Doubly labeled water was used to measure energy expenditure and body composition. Descriptive statistics described the sample and MANOVA and ANOVA methods were used to evaluate differences between groups. Results Energy expenditure was significantly less for children with spina bifida who primarily used a wheelchair (p = .001) and children with Down syndrome (p = .041) when compared to children without a disability when adjusted for fat-free mass. However, no significant difference was detected in children with spina bifida who ambulated without assistance (p = .072). Conclusions Children with spina bifida and Down syndrome have a significantly decreased energy expenditure which directly impacts recommended caloric intake. No significant difference was detected for children with spina bifida who ambulated, although the small sample size of this pilot study may have limited these findings. Validating these results in a larger study is integral to supporting successful weight management of these children

Nurse Researchers in Children\u27s Hospitals

Little is known about the role of nurse researchers (NRs) and the structure of nursing research programs in children\u27s hospitals in the United States. This descriptive study obtained survey data from 33 NRs. Data suggest that the NR role is emerging and has both commonalities and unique components when compared with the previous studies of NRs in adult hospitals. Most participants have been in their position for less than 4 years. Conducting research, having staff development related to research, and facilitating evidence-based practice or research were common responsibilities. The structure of nursing research programs impacts both the NRs and the program outcomes

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children

Purpose This study explored the sequential relationships of parent perceptions of the quality of their discharge teaching and nurse and parent perceptions of discharge readiness to post-discharge outcomes (parental post-discharge coping difficulty, readmission and emergency department visits). Design/methods In this secondary analysis of data from a longitudinal pilot study of family self-management discharge preparation, the correlational design used regression modeling with data from a convenience sample of 194 parents from two clinical units at a Midwest pediatric hospital. Data were collected on the day of discharge (Quality of Discharge Teaching Scale; Readiness for Hospital Discharge Scale), at 3 weeks post-discharge (Post-Discharge Coping Difficulty Scale), and from electronic records (readmission, ED visits). Results Parent-reported quality of discharge teaching delivery (the way nurses teach), but not the amount of content, was positively associated with parent perception (B = 0.54) and nurse assessment (B = 0.16) of discharge readiness. Parent-reported discharge readiness was negatively associated with post-discharge coping difficulty (B = − 0.52). Nurse assessment of discharge readiness was negatively associated with readmission; a one point increase in readiness (on a 10 point scale) decreased the likelihood of readmission by 52%. Conclusion There is a sequential effect of quality of discharge teaching delivery on parent discharge readiness, which is associated with parent coping difficulty and child readmission. Practice Implications Efforts to improve discharge outcomes should include strategies to build nurse teaching skills for high-quality delivery of discharge teaching. In addition, routine nurse assessment of discharge readiness can be used to identify children at risk for readmission and trigger anticipatory interventions

Trajectories of Self-management and Independence in Youth with Spina Bifida: Demographic Predictors of Growth

Aim: The purpose of this study was to examine the trajectories of condition and independent living self-management in youth with spina bifida (SB). MethodsA diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self-management and its subscales (condition and independent living) were estimated using linear mixed-effect models as a function of respondents\u27 demographics.ResultsThis study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty-seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self-management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self-management depended on sex; only males demonstrated increasing growth ( β̂$$\hat{\beta}$$ = 0.11, p \u3c 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( β̂$$\hat{\beta}$$diff = 0.17 and 0.17, respectively, both p \u3c 0.05) and Hispanic/Latino ( β̂$$\hat{\beta}$$diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. Conclusion: This study provides evidence of differences in growth of self-management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study

Development of a Self‐Management Theory‐Guided Discharge Intervention for Parents of Hospitalized Children

Background Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self‐management of their child\u27s care at home after discharge. Problem No theory‐based discharge intervention exists to guide pediatric nurses\u27 preparation of parents for discharge. Purpose To develop a theory‐based conversation guide to optimize nurses\u27 preparation of parents for discharge and self‐management of their child at home following hospitalization. Methods Two frameworks and one method influenced the development of the intervention: the Individual and Family Self‐Management Theory, Tanner\u27s Model of Clinical Judgment, and the Teach‐Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine‐domain conversation guide for use in acute care pediatric hospitals. Conclusions The theory‐based intervention operationalized self‐management concepts, added components of nursing clinical judgment, and integrated the Teach‐Back method. Clinical Relevance Development of a theory‐based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention