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

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

Novice Nurses’ Experiences With Palliative and End-of-Life Communication

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses

A Survey of NAPNAP Members’ Clinical and Professional Research Priorities

Introduction The purpose of this methodological article is to describe the development, implementation, and analysis of the survey used to determine NAPNAP members\u27 ranking of research priorities, to describe the top priorities ranked by participants, and to determine if priorities differed by area of practice (primary, acute, or specialty care) or participant age. Method A cross-sectional descriptive design with an online survey was used. Completed by 324 NAPNAP members, the survey consisted of a demographic section and 90 statements in two domains: Clinical Priorities and Professional Role Priorities. Results Survey respondents strongly supported the top priorities with an average overall mean score of 4.0 or above on a 5-point Likert scale. Only three of the top 10 clinical and professional priorities differed by area of practice. No clinical priorities and only three professional priorities differed by age. Discussion The survey results were used to develop the NAPNAP Research Agenda. Both the survey results and the agenda can provide guidance for the NAPNAP Board, committees and interests groups as they develop initiatives and programs