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.

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.

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.

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.