Body Composition and Energy Expenditure in Youth With Spina Bifida: Protocol for a Multisite, Cross-Sectional Study.

BACKGROUND: Obesity prevalence in youth with spina bifida is higher than in their typically developing peers. Obesity is associated with lifelong medical, psychological, and economic burdens. Successful prevention or treatment of obesity in individuals with spina bifida is compromised by (1) the lack of valid and reliable methods to identify body fat in a clinical setting and (2) limited data on energy expenditure that are necessary to provide daily caloric recommendations. OBJECTIVE: The objectives of this study will be to develop 2 algorithms for use in youth with spina bifida in a clinical setting, one to model body fat and one to predict total daily energy expenditure. In addition, physical activity and dietary intake will be described for the sample. METHODS: This multisite, prospective, national clinical study will enroll 232 youth with myelomeningocele aged 5 to 18 years (stratified by age and mobility). Participants will be enrolled for 1 week. Data obtained include 4 measures of body composition, up to 5 height measures, a ramped activity protocol, and a nutrition and physical activity screener. Participants will wear an accelerometer for the week. On the final study day, 2 samples of urine or saliva, which complete the doubly labeled water protocol, will be obtained. The analysis will include descriptive statistics, Bland-Altman plots, concordance correlation, and regression analysis. RESULTS: The study received extramural federal funding in July 2019. Data collection was initiated in March 2020. As of April 2024, a total of 143 (female participants: n=76, 53.1%; male participants: n=67, 46.9%) out of 232 participants have been enrolled. Data collection is expected to continue throughout 2024. A no-cost extension until November 2025 will be requested for data analysis and dissemination of findings. CONCLUSIONS: This study furthers previous pilot work that confirmed the acceptability and feasibility of obtaining alternate height, body composition, and energy expenditure measures. The findings from this study will enhance screening, prevention, and treatment of abnormal weight status by facilitating the accurate identification of youths' weight status category and recommendations of daily caloric needs for this population that is at higher risk of obesity. Furthermore, the findings have the potential to impact outcomes for youth diagnosed with disabilities other than spina bifida who experience similar challenges related to alterations in body composition or fat distribution or measurement challenges secondary to mobility issues or musculoskeletal problems. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52779.

Integrating Ecological and Feminist Perspectives to Study Maternal Experiences Feeding Children With Down Syndrome.

Purpose: The purpose of this article is to propose a theoretical framework integrating an ecological model with feminist theory for guiding future research in holistic nursing and healthcare about maternal experiences feeding children with Down syndrome. Background: Children with Down syndrome are at high risk for overweight and obesity, as well as feeding problems. Therefore, healthy weight promotion is crucial for children with Down syndrome. Feeding is one factor that may contribute to child weight. Literature on maternal experiences feeding children with Down syndrome, including the caregiving work involved in feeding, is limited. Methods: In this article, we identify literature gaps related to the topic of maternal experiences feeding children with Down syndrome. We summarize ecological and feminist perspectives and apply these perspectives to the topic to demonstrate the utility of the proposed framework. Implications for Holistic Nursing and Healthcare: Findings from future studies applying this theoretical framework integrating an ecological model with feminist theory will have implications for practice and research in holistic nursing and healthcare. This framework could be also adapted to inform future research focused on other populations or research topics.

An Integrative Review of the Use of the Individual and Family Self-Management Theory in Research.

The extent of the application of the Individual and Family Self-Management Theory (IFSMT) in research has yet to be determined. The purpose of this analysis was to review the use of the IFSMT in published research and evaluate posited constructs and relationships. Dimensions and categories of the IFSMT and the interrelationships were generally supported in the 77 articles reviewed. A majority focused on self-management of chronic conditions in the adult population. More research on the strength, direction, and interaction of relationships is needed. Defining and exploring social constructs, including race, ethnicity, and gender, should be prioritized in future IFSMT research.

Energy expenditure and weight-related behaviors in youth with Down syndrome: a protocol.

Background: The consequences of obesity are ominous, yet healthcare professionals are not adequately preventing or treating obesity in youth with Down syndrome (DS). Total daily energy expenditure (TDEE) is the energy expended in 24 h through physical activity and life-sustaining physiologic processes. An individual's TDEE is essential for determining the daily caloric intake needed to maintain or change body weight. Successful prevention and treatment of obesity in youth with DS is severely compromised by the lack of data on TDEE and information on weight-related behaviors for this high-risk population. This manuscript describes the protocol for the federally funded study that is in process to determine daily energy expenditure in a large cohort of children with DS. Methods: This observational cross-sectional study will include a national sample of 230 youth with DS, stratified by age (5-11 and 12-18 years of age) and sex. Doubly Labeled Water analysis will provide the criterion body fat%, fat-free mass, and TDEE. To increase accessibility and decrease the burden on participants, the entire study, including obtaining consent and data collection, is conducted virtually within the participant's home environment on weekdays and weekends. The study team supervises all data collection via a video conferencing platform, e.g., Zoom. This study will (1) examine and determine average TDEE based on age and sex, (2) develop a prediction equation based on measured TDEE to predict energy requirements with a best-fit model based on fat-free mass, sex, age, and height and/or weight, and (3) use 24-hour dietary recalls, a nutrition and physical activity screener, wearable devices, and sleep questionnaire to describe the patterns and quality of dietary intake, sleep, and physical activity status in youth with DS. Discussion: The lack of accurate information on energy expenditure and weight-related behaviors in youth with DS significantly impedes the successful prevention and treatment of obesity for this vulnerable population. The findings of this study will provide a further understanding of weight-related behaviors as obesity risk factors, currently not well understood for this population. This study will advance the science of weight management in individuals with disabilities and shift clinical practice paradigms.

Developing a Family Resource: Considerations for Family Member Research Participation.

When individuals participate in health care research, the choice often affects the entire family. Researchers are responsible for protecting participants and minimizing any burdens the research may place on them. Resources to educate potential study participants about these issues from a family perspective are lacking. A family-focused, evidence-based resource was created for individuals and families to prompt discussion prior to their consenting to enrollment in research. The resource includes key relevant questions to consider related to their study participation and was revised based on input from family nurse scientists and a hospital-based family advisory group. This resource raises awareness of the importance of employing a family lens when designing research and during the recruitment and enrollment of participants. Adopting a family lens in health care research will support the participant's ability to make an informed choice regarding participation and may ultimately enhance the experience of participants and their families and study outcomes.

Fathers' Experiences of Caring for a Child with a Chronic Illness: A Systematic Review.

The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers' experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers' experience, perceptions, and/or involvement in the child's care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father's Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers' experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.

Weight Status of Children Participating in the National Spina Bifida Patient Registry.

OBJECTIVES: Describe the distribution of weight status categories and determine factors associated with overweight and obesity (OW/OB) in children and adolescents with spina bifida (SB) using the National Spina Bifida Patient Registry. METHODS: Demographic, anthropometric, and clinical data collected from 2009 through 2018 was used to describe the prevalence of OW/OB. The generalized estimating equation model (GEE) identified factors associated with OW/OB among individuals with SB. RESULTS: Participants (n = 7215) were aged 2 to 19 years (mean = 11.1; standard error, 0.06) and 51.4% female. The majority were non-Hispanic white (57.2%) followed by Hispanic or Latino (25.1%) and non-Hispanic Black (7.5%). The myelomeningocele (MMC) subgroup accounted for 76.3%. Most (60.2%) were community ambulators. The overall percentage of OW/OB was 45.2%, with 49.2% of MMC and 32.0% of nonmyelomeningocele OW/OB. Following the Centers for Disease Control Obesity Severity Classification System, 19.7% of MMC were in class 1, 6.6% in class 2, and 3.5% in class 3. Univariate analysis of MMC participants demonstrated demographic (age, sex, race/ethnicity, and clinic region) and clinical variables (functional level of lesion, ambulation, and number of shunt surgeries) were associated with OW/OB. The GEE model showed that OW/OB was independently, and significantly, associated with age, sex, race/ethnicity, lesion levels, and geographic location of the clinics. CONCLUSIONS: The demographic and clinical factors associated with OW/OB in children and adolescents with SB further our understanding of factors contributing to the higher prevalence of OW/OB in this population and may inform OW/OB prevention and treatment strategies.

Parenting styles and dimensions in parents of children with developmental disabilities.

Parenting influences child development. There is limited research, however, related to parenting children who have developmental disabilities. The aims of this study were to: (1) describe the parenting styles and dimensions of parents of children with developmental disabilities and (2) assess differences in parenting styles and dimensions among parents of children with autism spectrum disorder (ASD), Down syndrome (DS), and spina bifida (SB). Secondary data analysis was conducted from a nationwide cross-sectional study of 496 parents of children aged 5-16 years with ASD (n = 180), DS (n = 156), or SB (n = 160). Parent scores indicated high use of the authoritative parenting style and associated parenting dimensions, mid-to-low use of the permissive parenting style, and low use of the authoritarian parenting style and associated dimensions. Variation in parenting styles and dimensions among parents was primarily related to the child's diagnosis and family income. An unanticipated but positive finding was that parents with lower family incomes had significantly higher scores for the authoritative parenting style. Results from this study can inform future research that might inform clinical practice.

Adherence to and changes in mental and physiological health during an 8-week yoga intervention: A pilot study.

BACKGROUND: Participating in yoga may be ideal for college students to increase physical activity and improve mental health. PURPOSE: To investigate the feasibility and impact of an 8-week yoga intervention within a university setting on mental and physiologic heath. METHODS: This 8-week yoga intervention included twelve yoga-naïve adults, (23.8 ± 4.6 years; 71% female). Participants attended two 60-min yoga classes/week in addition to baseline, mid- and post-lab visits. RESULTS: 83% of participants attended ≥75% of yoga classes. Stress and depression symptoms decreased by 11% and 25%, respectively and erythrocyte sedimentation rate (ESR) reduced by 28%. Participants who did not meet physical activity recommendations observed greater improvements in stress, depression symptoms, ESR, and C-reactive protein compared to participants who met recommendations. CONCLUSION: The majority of participants attended ≥12 of 16 yoga classes. Exploratory analyses provide preliminary support for the impact of yoga on reducing stress, symptoms of depression, and ESR. Participants who were not meeting physical activity guidelines prior to starting the intervention received greater benefits.

Weight stigma in children and adolescents: Recommendations for practice and policy.

ABSTRACT: Weight stigma is the devaluation of a person because of excess body weight. Individuals who experience stigmatization are at increased risk for adverse physical and psychological health outcomes. This article provides an overview of weight stigma and the implications for nursing practice and policy.

Nurses' Experiences Implementing e PED : An iPad Application to Guide Quality Discharge Teaching.

Quality discharge teaching prepares patients and families to transition safely from hospital to home. Technology can enhance and support quality discharge teaching by promoting patient family engagement during the transition. The purpose of this mixed methods study was to explore clinical nurses' experience with using Engaging Parents in Education for Discharge, an iPad application to guide quality discharge teaching. Twelve nurses at a large Midwestern Children's Hospital participated in small focus groups after use of the Engaging Parents in Education for Discharge application and completed a questionnaire on their perception of the acceptability and feasibility of the app. Findings revealed three themes: (1) development and deployment issues focused on the importance of training and support by the study team during implementation; (2) workflow integration centered on the importance of incorporating use of the app into current workflows and to preserve effective communication strategies with parents to optimize use in the healthcare setting; and (3) nurses perceived value in the use of the Engaging Parents in Education for Discharge app for beneficial scripting, questions on discharge topics often forgotten, and guidance for complex patients. Results of this study offer insight into key components for consideration when implementing and integrating technology to aid nursing practice.

Feasibility and applicability of Evenson sedentary behavior cut points applied to children with and without intellectual and developmental disabilities.

AIM: Sedentary behavior (SB) is widely studied as it is associated with cardiometabolic health and obesity issues. However, children with Intellectual and Developmental Disabilities (IDD) have been understudied. Accelerometers are commonly used to measure SB in typically developing populations but may be inappropriate for IDD populations due to differences in body movement and physiologic responses to the activity. The use of Evenson sedentary cut-points, created based on typically developing children, has yet to be applied and/or examined in children with IDD. PURPOSE: A descriptive cross-sectional study was conducted to (1) Assess the feasibility of applying Evenson sedentary cut-points in children with IDD (2) Describe SB over a two-week period between diagnosis groups. METHODS: The SB of 22 participants (8 children with Down syndrome, 6 children with spina bifida, 8 children with no chronic illness) was assessed on two separate occasions: (1) during a 7-minute sedentary protocol, and (2) over a two-week period. RESULTS: The study supports the preliminary efficacy of using Evenson cut-points for this population, with 100% of participants being within the Evenson counts per minute (0-100 cpm) during the 7-minute sedentary protocol. The total volume of SB over a two-week period was not significantly different between diagnosis groups (8.8 h, 8.6 h, and 7.1 h of SB for children with Down syndrome, spina bifida, or those with no chronic illness, respectively; p = 0.36). CONCLUSIONS: Evenson sedentary cut-points can be used for children with IDD. Preliminary data suggest that children with IDD do not engage in significantly different SB than children without a chronic illness. Further study is warranted.Implications for rehabilitationObjective measures of physical activity and sedentary behavior for children with Down syndrome or spina bifida are rarely used due to potential differences in body movement (e.g., gait) during ambulation compared to typically developing peers that may influence the accuracy of cut-points.This study supports that Evenson sedentary cut-points can be used in children with Down syndrome or spina bifida to assess sedentary activity.Preliminary findings from this study demonstrate similarities in patterns of sedentary behaviors exhibited by our sample of children with Down syndrome, spina bifida, or no chronic illness.

One Size Does Not Fit All: Discharge Teaching and Child Challenging Behaviors.

This study compares quality of discharge teaching and care coordination for parents of children with challenging behaviors participating in a nursing implementation project, which used an interactive iPad application, to usual discharge care. Unlike parents in the larger quasi-experimental longitudinal project, parents of children with challenging behaviors receiving the discharge teaching application (n = 14) reported lower mean scores on the quality of discharge teaching scale-delivery subscale (M = 8.2, SD = 3.1) than parents receiving usual care (n = 11) (M = 9.6, SD = 4.7) and lower scores on the Care Transition Measure (M = 2.44, SD = 1.09) than parents receiving usual care (M = 3.02, SD = 0.37), with moderate to large effects (0.554-0.775). The discharge teaching approach was less effective with this subset, suggesting other approaches might be considered for this group of parents. Further study with a larger sample specific to parents of children with challenging behaviors is needed to assess their unique needs and to optimize their discharge experience.

Quality of Dietary Intake in Children With Developmental Disabilities: A Pilot Study.

BACKGROUND: Children with developmental disabilities have a high prevalence of overweight and obesity. The role and contribution of their diet to weight status is poorly understood. OBJECTIVES: This pilot study describes the dietary quality of children with spina bifida and Down syndrome compared with typically developing peers. METHODS: Dietary intakes of 8 children with spina bifida or Down syndrome and 4 children without developmental disabilities, aged 8 to 18 years, were collected using six 24-hour dietary recalls through Facetime. Dietary quality was assessed by application of the Healthy Eating Index (HEI). RESULTS: Children with spina bifida and Down syndrome had higher HEI scores when compared to typically developing peers (48.3, 52.9, and 46.2, respectively) and vegetable consumption (1.9, 2.6, and 1.4, respectively). All groups had undesirable intakes of saturated fat, added sugar, and sodium. Within this small sample, children with spina bifida and Down Syndrome had similar diet quality to their typically developing peers. CONCLUSIONS: Further investigation in a larger sample is recommended to support the development of methods to optimize weight management in children with developmental disabilities.

Accuracy of body mass index in categorizing weight status in children with intellectual and developmental disabilities.

PURPOSE: To identify the accuracy of Body Mass Index (BMI) to categorize body weight in a sample of children with spina bifida and Down syndrome as compared to typically developing peers. METHODS: A secondary analysis of 32 children with spina bifida, Down syndrome or no chronic illness. A calculated BMI was plotted on the Centers for Disease Control and Prevention age- and sex-specific BMI growth charts to determine each child's weight status. Percentage of body fat, obtained by labeled water, was plotted on two different body fat percentile reference curves, one derived from a whole body measure (DXA) of body fat and one by skin-fold measure. Differences in weight categories between calculated BMI and body fat percentile curves were reported. RESULTS: The calculated BMI for children with a disability had significant misclassifications as a screening tool for body fat when compared to children without a disability. Misclassifications were increased with the body fat percentile reference curve derived from skin-fold measures and for children who primarily used a wheelchair. CONCLUSION: The current recommendation to use BMI to categorize weight status is not useful for many children with disabilities. Further research to identify an alternative pragmatic strategy is necessary.

Experiences of weight stigma in adolescents with severe obesity and their families.

AIM: To describe the experiences of weight stigma in adolescents with severe obesity and their parents. DESIGN: Qualitative descriptive secondary analysis. METHODS: A secondary analysis on 31 transcripts from a larger study of 46 transcripts conducted between February 2019 and June 2020. Semi-structured interviews were conducted with 19 parents (n = 17 mothers, n = 2 fathers) and 12 adolescents (n = 7 male, n = 5 female). Interviews were digitally audio recorded, transcribed and analysed using conventional content analysis. RESULTS: Four common themes were identified reflecting experiences of weight stigma: weight-based teasing and bullying, interactions with healthcare providers (HCPs), family interactions and blame. Subthemes were fairness and impact on mental health. CONCLUSION: This secondary analysis adds to the sparse literature documenting the experiences of weight stigma from adolescents with severe obesity and their families. It is important to understand the experiences of weight stigma from the adolescent and parent perspective as it can inform healthcare, education and policies across communities and facilitate holistic health for this vulnerable population. IMPACT: The need for research to better understand how experiences of weight stigma correlate with physiological and psychological outcomes and inform innovative interventions are critical to improve treatment of severe obesity. Healthcare providers across disciplines are in a strategic position to change the paradigm through which we provide care to youth with severe obesity and guide families in supporting their children's weight management efforts without contributing to weight stigma.

Relationship between Stress and Feeding Behaviors in Parents of Children with Developmental Disabilities.

Background: Controlling feeding practices are associated with negative child eating behaviors and an increased risk of obesity. Parental stress may be related to feeding practices. Children with developmental disabilities have increased obesity prevalence, and families may also experience increased stress. This study examined the relationship between family stress and parental feeding practices in children with developmental disabilities and how concern for the child's weight may moderate this relationship. Methods: Secondary analysis using a descriptive cross-sectional design was employed. Parents of children aged 5 to 15 years, with autism spectrum disorder (ASD), Down syndrome (DS), or spina bifida (SB) were recruited nationally. Demographics, the Child Feeding Questionnaire, and the Questionnaire on Resources and Stress were completed online. Analysis included regression with an empirical Bayesian effects model. Results: Five hundred twenty-three parents, 186 (ASD), 173 (DS) and 164 (SB), participated. Family stressors were associated with the use of controlling feeding practices. Direct effects included: (1) physical incapacitation on restriction and pressure to eat (ASD and DS); (2) pessimism (ASD) and concerns about child overweight (SB) on pressure to eat; and (3) parent/family problems on restriction (DS). Concern for child overweight moderated these relationships and resulted in two interactions (DS and SB). Conclusion: Understanding the relationship of family stressors with parental feeding practices and the role of parental concern for child overweight can potentially optimize feeding in this high-risk population. This study highlights the need to provide family-centered care with awareness of stress and its potential association with daily activities and children's health.

Association between yoga, physiologic and psychologic health: A cross sectional study.

PURPOSE: To compare markers of health associated with chronic diseases between yoga and non-yoga participants. METHODS: 30 participants were categorized as either: 1) "Yoga" engaging in yoga ≥2 times/week for ≥6 months, or 2) "Non-yoga" not engaging in yoga. RESULTS: Perceived Stress Scale (PSS) and Beck Depression Inventory-II (BDI-II) scores were significantly different between the yoga and non-yoga groups (PSS: 8.0 vs. 17.5, respectively, p < 0.05; BDI-II: 1.0 vs. 5.5, respectively, p < 0.05). No significant differences were evident between groups for inflammatory markers nor Complex V of the mitochondrial electron transport chain. The erythrocyte sedimentation rate values differed between groups based on clinical cutoffs, with yoga participants categorized as normal (11.0 mm) and non-yoga above normal (21.5 mm). CONCLUSION: This research supports that yoga participation is associated with lower PSS and BDI-II scores but does not support a relationship with markers of inflammation. Further research is warranted.