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.

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.

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.

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.

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.

Using the Engaging Parents in Education for Discharge (ePED) iPad Application to Improve Parent Discharge Experience.

PURPOSE: The purpose of this study was to evaluate the use of the Engaging Parents in Education for Discharge (ePED) iPad application on parent experiences of hospital discharge teaching and care coordination. Hypotheses were: parents exposed to discharge teaching using ePED will have 1) higher quality of discharge teaching and 2) better care coordination than parents exposed to usual discharge teaching. The secondary purpose examined group differences in the discharge teaching, care coordination, and 30-day readmissions for parents of children with and without a chronic condition. DESIGN/METHODS: Using a quasi-experimental design, ePED was implemented on one inpatient unit (n = 211) and comparison group (n = 184) from a separate unit at a pediatric academic medical center. Patient experience outcome measures collected on day of discharge included Quality of Discharge Teaching Scale-Delivery (QDTS-D) and care coordination measured by Care Transition Measure (CTM). Thirty-day readmission was abstracted from records. RESULTS: Parents taught using ePED reported higher QDTS-D scores than parents without ePED (p = .002). No differences in CTM were found between groups. Correlations between QDTS-D and CTM were small for ePED (r = 0.14, p 0.03) and non-ePED (r = 0.29, p < .001) parent groups. CTM was weakly associated with 30-day readmissions in the ePED group. CONCLUSION: The use of ePED by the discharging nurse enhances parent-reported quality of discharge teaching. PRACTICE IMPLICATIONS: The ePED app is a theory-based structured conversation guide to engage parents in discharge preparation. Nursing implementation of ePED contributes to optimizing the patient/family healthcare experience.

Engaging Parents in Education for Discharge (ePED): Evaluating the Reach, Adoption & Implementation of an Innovative Discharge Teaching Method.

PURPOSE: This paper describes the evaluation of the implementation of an innovative teaching method, the "Engaging Parents in Education for Discharge" (ePED) iPad application (app), at a pediatric hospital. DESIGN AND METHODS: The Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework was used to guide the evaluation. Three of the five RE-AIM elements are addressed in this study: Reach, Adoption, and Implementation. RESULTS: The Reach of the ePED was 245 of 1015 (24.2%) patient discharges. The Adoption rate was 211 of 245 (86%) patients discharged in the five months' study period. High levels of fidelity (89.3%) to Implementation of the ePED were attained: the Signs and Symptoms domain had the highest (93%) and Thinking Forward about Family Adjustment screen had the lowest fidelity (83.3%). Nurse themes explained implementation fidelity: "It takes longer", and "Forgot to do it." CONCLUSIONS: The ePED app operationalized how to have an engaging structured discharge conversation with parents. While the Reach of the ePED app was low under the study conditions, the adoption rate was positive. Nurses were able to integrate a theory-driven practice change into their daily routine when using the ePED app. IMPLICATIONS FOR PRACTICE: The rates of adoption and implementation fidelity support the feasibility of future hospital wide implementation to improve patient and family healthcare experience. Attention to training of new content and the interactive conversation approach will be needed to fully leverage the value of the ePED app. Future studies are needed to evaluate the maintenance of the ePED app.

A Developmental Milestones Map of Type 1 Diabetes Self-Management Transition From Parents to Adolescents.

Transitional diabetes self-management (DSM) for children and their families is complicated. This article was undertaken to provide an exemplar of DSM strategies used by one family that were based on developmental milestones from preschool through college age. Two brothers who were both diagnosed with type 1 diabetes before the age of 2 years reflected on how their parents began a DSM navigation process during their early preschool years. Personal strategies and recommendations successfully resulted in both youths transitioning to college. With the parents serving as DSM coaches to the boys, an interdependent relationship was built. Key recommendations include 1) starting early, 2) being consistent and flexible, 3) using "invisible actions" and "what ifs," 4) incorporating technology and community resources into DSM, and 5) building confidence with shared problem-solving.

The Influence of a Developmental Disability on the Child's Weight-Related Behaviors: A Parent's Perspective.

PURPOSE: To examine the parent's perspective on how the child's diagnosis of a developmental disability, the weight-management support of the healthcare provider and parental self-care and role modeling influenced the child's weight-related behavior, (i.e. nutrition, physical and sedentary activity). DESIGN AND METHODS: This qualitative study, guided by Bronfenbrenner's Ecological System's Theory, used a one-on-one semi-structured telephone interview conducted with 15 parents of children 5-16 years of age with spina bifida or Down syndrome. Interviews were professionally transcribed and thematically analyzed. In addition, parents reported height and weight for themselves and their child. RESULTS: Three overarching themes within the context of how the child's diagnosis influenced the child's weight-related behaviors emerged: 1) Developmental Characteristics or Condition-Related Factors captured qualities of the child's condition and interactions with the healthcare system; 2) Social Consequences encompassed the influence of the diagnosis on relationships of the child and family members; and 3) Parenting Influences and Practices captured three types of responses including parent perceptions of the diagnosis, parenting behaviors, and parental self-care behaviors, each influencing the child's weight-related behaviors. CONCLUSIONS: Parents illuminated the social and medical challenges that the family encountered due to the child's diagnosis. These challenges directly and indirectly influenced the child's physical and sedentary activity and nutritional intake. Although challenges were present, the strength and determined attitudes of the families became apparent. PRACTICE IMPLICATIONS: The promotion of self-care and examination and validation of the emotional aspects of parenting a child with a disability may positively influence the child's weight-related behaviors.

Autism Spectrum Disorder and the Child's Weight-Related Behaviors: A Parents' Perspective.

To explore parent perspectives of how the attributes of their child's autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent's 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's challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths.

Family Perspectives of Components of a Diabetes Transition Program.

PURPOSE: To evaluate the perspectives of adolescent/parent dyads about a diabetes program on: (1) perception of knowledge, self-efficacy, importance of transition behaviors and ability to self-manage diabetes, (2) the congruency of knowledge and skills important for transition, (3) program specifics families determined helpful for transition, and (4) the relationship of adolescents' self-efficacy to self-management behaviors (SMB) and Hemoglobin A1C (HbA1C). METHODS: The individual and family self-management theory guided this prospective cross-sectional study. Sample included 45 dyads from a pediatric diabetes program. Dyads independently completed questionnaires related to knowledge, self-efficacy, the importance of specific diabetes knowledge and skills, and behaviors helpful for self-management and transition readiness. Analysis included frequencies, correlations, Cronbach's alpha, and paired t-tests. RESULTS: Knowledge was high and self-efficacy even higher in the dyads. However, they did not agree on behaviors important for transition such as, knowing what the HbA1C should be, accurately counting carbohydrates, how to check ketones, how alcohol and drugs affect diabetes, or consistent documentation of blood sugar, carbohydrates and insulin doses. Adolescents indicated talking with providers and program materials as helpful, but attending regular visits and talking with parents as most helpful for transition. Adolescent and parent assessment of adolescent self-efficacy and self-management behaviors were strongly correlated. Family dyad's perceptions of adolescent self-efficacy were similar but not related to HbA1C. CONCLUSION: A diabetes transition program has the opportunity to impact an adolescent's ability to self-manage their chronic illness by increasing self-efficacy and recognizing the strengths of the parent, adolescent and provider in the transition process.

Perception and documentation of weight management practices in pediatric primary care.

BACKGROUND: Pediatric obesity is a significant problem in the United States. The Childhood Obesity Action Network (COAN) published expert recommendations in 2007 for pediatric obesity prevention and assessment at well-child visits. The purpose of this study was to assess pediatric providers' perception and documentation of their adherence to the 2007 COAN guidelines. METHODS: This was a 2-part cross sectional research study. A 36-item questionnaire about screening and management of obesity was sent to 69 providers from 16 pediatric practice sites in Southeastern Wisconsin. A retrospective chart review of well-child visits performed in June 2012 was conducted. RESULTS: Discrepancies were found between what providers reported and documented for their obesity screening management and anticipatory guidance that they provided. In addition, the majority of providers reported inadequacy and lack of comfort when working with overweight or obese patients. Patient compliance and motivation were reported as barriers to obesity management. CONCLUSION: Discrepancies exist between providers' self-report and documentation of obesity screening and management. In addition, providers report discomfort in managing obesity. Tools to improve documentation and continued education to improve provider comfort in managing obesity are imperative steps in optimizing care.

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.

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.

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.

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.

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 behaviors of African American and Caucasian families: parent and child perceptions, associations with child weight, and ability to identify abnormal weight status.

This study examined the agreement between parent and child perceptions of parenting behaviors, the relationship of the behaviors with the child's weight status, and the ability of the parent to correctly identify weight status in 176 parent-child dyads (89 Caucasian and 87 African American). Correlational and regression analyses were used. Findings included moderate to weak correlations in child and parent assessments of parenting behaviors. Caucasian dyads had higher correlations than African American dyads. Most parents correctly identified their own and their child's weight status. Parents of overweight children used increased controlling behaviors, but the number of controlling behaviors decreased when the parent expressed concern with their child's weight.

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.

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.