A Virtual Home Preparedness Intervention Centered on Children and Youth With Special Health Care Needs.

OBJECTIVE: Children and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network. METHODS: The VHPI comprised 1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth's care needs; 2) a resource packet containing emergency planning templates and information on local supports; and 3) individualized referrals coordinated through the medical home/community partners. Eligible CYSHCN had medical technology reliance, physical/mobility needs, communication/intellectual challenges, and/or vision/hearing loss. Preparedness was measured as pre/post affirmed rates of 19 items from the interview and as mean composite scores of these items; associations were evaluated using generalized estimating equations-based regression for repeated measures. RESULTS: The pre and post-VHPI interviews were completed by 170 and 148 participants, respectively. Significant individual-item gains included having a current Emergency Information Form for the child/youth (31% [pre] to 47% [post] affirmed) and assembling an evacuation kit (50% to 68%). The mean preparedness score was 13.33/19 items affirmed at baseline and increased to 14.96 post-VHPI (P < .01). In the adjusted regression model, the post-intervention preparedness score remained significantly higher than pre-VHPI, with mean increases of 1.22 preparedness steps affirmed for homeowners and 1.85 for renters. CONCLUSIONS: Preparedness scores improved post-VHPI in families with CYSHCN. Future work should address incorporating the VHPI into care visits in the medical home.

Communication Preferences of Parents and Caregivers of Children and Youth With Special Healthcare Needs During a Hypothetical Infectious Disease Emergency.

Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.

Children With Special Needs: Social Determinants of Health and Care Coordination.

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.

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home.

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.

Evaluation of a statewide medical home program on children and young adults with asthma.

OBJECTIVE: Asthma, the most common chronic condition among children, accounts for significant healthcare utilization and impact on quality of life. Care coordination in a medical home is considered standard practice, but has not been rigorously evaluated. METHODS: We initiated this pilot study of children/young adults with asthma (n = 967), ages: birth to 24 years, receiving care from a subset of pediatric practices (n = 20) participating in the Pennsylvania Medical Home Initiative, Educating Practices in Community-Integrated Care (92 practices statewide). We hypothesized children and youth with asthma receiving care coordination in the context of a formal medical home program would experience favorable associations with healthcare utilization and quality of life measures. RESULTS: A total of 9240 care coordination encounters for this cohort of children/youth occurred over 100 days. The average length of care coordination encounter was 20.7 minutes. The most common care coordination activity was referral management (21%) and the care coordinator in the practice most often contacted parent/family and specialists (75%). Children with more severe asthma had more hospitalizations and emergency department (ED) visits than children with less severe asthma. There was a significant decrease in school absences, ED visits and acute care visits for children/youth with asthma with increasing length of time in a medical home program (p < 0.05). CONCLUSION: Care coordination for children/youth with asthma is feasible and may yield improvements in healthcare utilization, expenditures and quality of life. Larger-scale implementation of care coordination and medical home models for children/youth with asthma and other diagnoses are warranted.