ABSTRACT. Objective. The prevalence of childhood obesity is increasing in the United States. However, it has been difficult to help children successfully lose weight and maintain weight loss. Parental involvement in this effort is important. Currently, little is known about parents' readiness to make behavior changes to help their children lose weight. The objective of this study was to describe demographic factors and parental perceptions associated with parents' readiness to make weight-reducing lifestyle changes for their overweight and at-risk-foroverweight children.Methods. A total of 151 parents of children who were aged 2 to 12 years and had BMIs >85th percentile for age and gender completed a 43-item self-administered questionnaire. Parental stage of change, defined as precontemplation stage, contemplation stage, and preparation/ action stage, was determined using an algorithm involving current parental practices and future intentions. Parents in the preparation/action stage were considered to be ready to make behavior changes to help their child lose weight. Maximum-likelihood multinomial logistic regression was used to identify demographics and perceptions associated with parental stage of change.Results. Sixty-two percent of the children had a BMI >95th percentile. Their mean age was 7.5 years, and 53% were male. Of the 151 parents, 58 (38%) were in the preparation/action stage of change, 26 (17%) were in the contemplation stage, and 67 (44%) were in the precontemplation stage. Factors associated with being in the preparation/action stage of change were having overweight or older (>8 years) children, believing that their own weight or child's weight was above average, and perceiving that their child's weight was a health problem. After controlling for multiple factors, having an older child (odds ratio ABBREVIATIONS. OR, odds ratio; CI, confidence interval.[

Background Patient and family engagement (PFE) is vital to the spirit of the medical home. This article reflects the efforts of an expert consensus panel, the Patient and Family Engagement Workgroup as part of the Society of General Internal Medicine’s 2013 Research Conference. Objective To review extant literature on PFE in pediatric and adult medicine and quality improvement, highlight emerging best practices and models, suggest questions for future research, and provide references to tools and resources to facilitate implementation of PFE strategies. Methods We conducted a narrative review of relevant articles published from 2000–2015. Additional information was retrieved from personal contact with experts and recommended sources from workgroup members. Results Despite the theoretical importance of PFE and policy recommendations that PFE occur at all levels across the health care system, evidence of effectiveness is limited, particularly for quality improvement. There is some evidence that PFE is effective, mostly related to engagement in the care of individual patients, but the evidence is mixed and few studies have assessed the effect of PFE on health outcomes. Measurement issues and the lack of a single comprehensive conceptual model pose challenges to progress in this field. Recommendations for future research and a list of practical tools and resources to facilitate PFE are provided. Conclusion Although PFE appeals to patients, families, providers, and policy-makers, research is needed to assess outcomes beyond satisfaction, address implementation barriers, and support engagement in practice redesign and quality improvement. Partnering with patients and families has great potential to support high quality health care and optimize outcomes.

This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

Families with children who have access and mobility challenges, chronic illness, or intellectual or developmental disabilities require targeted messages before, during, and after disasters to ensure that they understand risks to their children's health and can take measures to avoid harm and build resilience. A scoping review was conducted to assess current evidence for optimal ways to address the disaster information needs and communication preferences of families with children and youth with special healthcare needs. The disaster information needs of such families remain understudied, with few published evidence-based practices. Much of the relevant research focuses on information content, specifically the preparedness needs of these families; disaster recovery information for them remains a major gap. The few studies that have been performed suggest that parents with children and youth with special healthcare needs require additional information, education, and training to develop an effective disaster preparedness plan for their children. They are also largely unaware of schools' disaster plans, and schools are often unable to meet parents' expectations for timely, accurate information during a disaster. Several guidance documents highlighted the importance of completing an emergency information form before an event. Several studies suggested that one-on-one education or counseling was a strategy for encouraging preparedness planning; others highlighted potential value in incorporating families directly into disaster risk reduction planning. Evidence about channel preferences and their effectiveness in this population was generally lacking. Future studies should expand the evidence basis for optimal communication during all disaster phases both with parents of children and youth with special healthcare needs and with children directly.

Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.