Home-Based Emergency Preparedness for Families of Children and Youth With Special Healthcare Needs: A Scoping Review.

Children and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN. Our search strategy yielded 22 relevant articles; 13 pertained to life-safety emergencies, 5 centered on widespread disasters, and 4 addressed preparedness on multiple scales. Approaches to measure or attempt to improve emergency preparedness levels in CYSHCN and their families were diverse and included interviews and focus groups; didactic, video-based, or side-by-side instruction; simulated medical crises; and provisioning of emergency kits. For the studies that involved an intervention (n=15, 68%), several proxy indicators of preparedness were used, including caregiver knowledge, skill, or comfort level with managing emergencies that could affect their CYSHCN; completion of preparedness tasks; and reduction in adverse clinical outcomes. Despite the varied methodologies, prevailing themes in the studies were that family caregivers of CYSHCN felt underprepared for emergencies and disasters, desired training to improve their preparedness at home, and benefited from such trainings, at least in the short term, across domains of self-efficacy, skill, and health outcomes of their CYSHCN. Although more research is needed to compare preparedness interventions and evaluate the durability of these interventions in larger, more diverse samples of CYSHCN and their families, our findings support incorporating preparedness training into preventive care encounters and the hospital-to-home transition.

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.

A Quantitative Public Health Risk Assessment Tool for Planning for At-Risk Populations.

The Drexel University Center for Public Health Readiness and Communication developed a quantitative public health risk assessment tool that has been used in Pennsylvania and across the United States. The tool assesses hazard impacts on health care and public health metrics and incorporates the planning needs of at-risk populations. The flexible platform using Microsoft Excel allows planners to customize hazard assessment and use jurisdiction-specific data. Findings from the risk assessment can guide planning and evaluate preparedness progress over time.

Primary Care Medical Practices: Are Community Health Care Providers Ready for Disasters?

OBJECTIVE: This study seeks to determine the capacity of community primary care practices to meet the needs of patients during public health emergencies and to identify the barriers and resources necessary to participate in a coordinated response with public safety agencies. METHODS: The self-administered web-based survey was distributed in January 2014 via e-mail to primary care providers in Pennsylvania using the listservs of several professional societies. RESULTS: A total of 179 primary care providers participated in the survey. In total, 38% had practice continuity of operations plan in place and 26% reported that they had a plan for patient surge in the outpatient setting. Thirty percent reported that they were registered on the state Health Alert Network and 41% said they were able to communicate with patients during disasters. Only 8% of providers reported that they believed that their patients with special health care needs were prepared for a disaster, although over two-thirds of responding practices felt they could assist these patients with disaster preparedness. Providers indicated that more information regarding government agency plans and community resources, patient education materials, and more time to devote to counseling during patient encounters would improve their ability to prepare their patients with special health care needs for disasters. Providers also reported that they would benefit from partnerships to help the practice during emergencies and communications technology to reach large numbers of patients quickly. CONCLUSIONS: Community-based primary care practices can be useful partners during public health emergencies. Efforts to promote continuity of operations planning, improved coordination with government and community partners, as well as preparedness for patients with special health care needs, would augment their capabilities and contribute to community resilience. (Disaster Med Public Health Preparedness. 2019;13:128-132).

The Disaster Information Needs of Families of Children with Special Healthcare Needs: A Scoping Review.

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.

Are human service agencies ready for disasters? Findings from a mixed-methods needs assessment and planning project.

A mixed-methods design was used to assess the current capacity of human service agencies to provide services in a major disaster, identify challenges and successful strategies for providing those services, and formulate specific recommendations for government planners and the nonprofit sector to promote the integration of human service agencies into emergency preparedness and response. A web-based survey was completed by 188 unique human service agencies, 31 semistructured interviews were conducted with human service agency and government leaders from southeastern Pennsylvania and the mid-Atlantic region, and a collaborative planning meeting was held to review the findings and develop systems-based recommendations. Survey results indicated that human service agencies serve the most vulnerable communities during disasters and would welcome integration into preparedness and response plans, but they currently face challenges that include a lack of real-time communication and opportunities for collaborative planning with government partners. Interview findings were grouped according to 5 themes that emerged: capacity, coordination, communication, training, and leadership. This study identified recommendations to assist human service agencies, local health departments, and emergency management agencies as they work to ensure that needed human services are available during disasters, despite the resource challenges that most agencies face.

Consumer understanding of calorie labeling: a healthy monday e-mail and text message intervention.

OBJECTIVE: To assess caloric knowledge of participants and determine if an e-mail and/or text message intervention could increase knowledge of recommended daily caloric intake. DESIGN: Randomized, control trial. SETTING: Johns Hopkins Hospital Cobblestone Café. PARTICIPANTS: The 246 participants reported eating at the Café at least twice/week. INTERVENTION(S): Participants randomized to control, e-mail, or text condition. The text and e-mail conditions received a message on four consecutive Mondays stating the recommended daily caloric intake. MAIN OUTCOME MEASURES: Knowledge of the government reference value of 2,000 calories. ANALYSIS: Intention-to-treat analysis was conducted. Multivariate logistic regression examined the effectiveness of text and e-mail messaging for improving knowledge of the government calorie reference value. RESULTS: Baseline awareness of the daily calorie reference value in study population was low. Participants in the text message condition were twice as likely to know the government calorie reference value compared to controls (p = .047, odds ratio = 2.2, 95% confidence interval [1.01, 4.73]). No significant differences were found for the e-mail condition (p = .5). CONCLUSIONS AND IMPLICATIONS: Many people do not know the daily recommended caloric intake. Public education on the government calorie reference value is necessary for menu-labeling interventions to be more effective. Weekly text messaging can serve as an effective modality for delivering calorie information and nutrition education.

Label management: investigating how confidants encourage the use of communication strategies to avoid stigmatization.

In modified labeling theory, Link and colleagues (1987, 1989) explicate how people use communication to cope with being labeled as members of a stigmatized group. In this paper, we change perspectives and investigate how a confidant's awareness of discrimination and devaluation associated with being labeled as a member of a stigmatized group ("mentally ill" or "smoker") motivates him or her to encourage a labeled loved one to engage in secrecy, withdrawal, or education to avoid the adverse actions associated with stigmatization. Results showed that a model of relationships among perceived devaluation and discrimination, coping strategies, and future disclosures extended well to unexpected confidants of a labeled loved one. This advice included encouraging the labeled loved one not to tell different people about their condition, which included health care providers. These findings also showed that people with experience in the labeling condition may have particular concern about stigmatization or rejection from different types of listeners, including close friends and health care providers.