Preparing to meet the needs of infants, children, and adolescents requires an entire system approach. This graphic provides a visual tool to begin conversations in communities and to identify areas where disaster preparedness efforts can be strengthened.
Overview
The American Academy of Pediatrics (AAP) holds a cooperative agreement with the Centers for Disease Control and Prevention (CDC) that includes support for a project to educate and collaborate with pediatricians regarding emerging threats to infants and children. Initially the CDC prioritized hepatitis C, congenital syphilis, and neonatal opioid withdrawal syndrome (NOWS) for the project. With the declaration of the COVID-19 pandemic in early 2020, COVID-19 was added as an additional emerging threat, and the response to COVID-19 was included as part of the project’s activities.
The AAP gathered experts that represented a variety of perspectives – including pediatrics – to inform the development of a visual representation that depicts the characteristics for a system of care that can effectively support infants and children impacted by emerging public health threats. Based on the challenges, building block solutions, and action items this group of experts identified, the following graphic was developed. It is the goal of the Academy to use this graphic to connect the medical home, families, and other key community stakeholders to help move state-based systems forward to improve care and outcomes.
Four focus groups were conducted to gather input. From those focus groups, 3 primary challenges for any system of care emerged: Communication, Screening and Data, and Preparedness and Planning. Participants were asked to consider these 3 challenge areas and assess the true state of the current system in this context. From there, participants were asked to use the third session to explore “building block solutions” – smaller, achievable steps that could be implemented without significant additional investment of human or financial resources or new infrastructure. Grouping the building block solutions under the 3 original challenges – communication, screening and data, and preparedness and planning – there emerged 5 overarching goals. These 5 goals do not represent all that is needed to be achieved in a system of care, but they do represent the priorities that the participants in this meeting series indicated would have the most impact.
The 5 goals are:
- Messages are relevant to all audiences, addressing cultural, geographic, and other critical differences.
- All system contributors are actively addressing racism and other forms of discrimination and health disparities.
- There are strong and collaborative relationships between health systems and public health.
- Existing guidance supports effective screening practices for emerging threats and is guided by data, which is managed with transparency.
- Infrastructure supports systems to be prepared to respond to emerging threats, but acute and chronic, in all phases – preparedness, response, mitigation, and recovery.
Participants examined the 5 goals and the solutions that fell under each. They developed more detailed action steps that can be used by states to achieve the building block solution, ultimately leading to achieving the overarching goal. Many of these challenges, building block solutions, action steps, and goals are depicted in the following graphic. The graphic is meant to be used as a tool to engage in dialogue with those, including pediatricians, who can work to create this system of care in their states and communities.
Action Step 1: Assess the Current State of the System
- Our subject matter experts (SMEs) identified communication, screening, and preparedness and planning as the key challenges most systems face.
- Systems should strive for communication that is presented to the right people at the right time in the right way. Racism and other forms of discrimination disrupt communication and result in health inequities.
- A strong relationship between the health system and public health will build a sense of trust in the information being shared.
- Families and the community need to understand why data is being collected; the data needs to be shared with the community once analyzed.
- All stakeholders – including families – play a role in ensuring the system is prepared for future public health threats, with infrastructure that can support the needs of all affected.
Action Step 2: Engage Families from the Very Beginning
- Families are the primary stakeholder in any system of care.
- Planning and preparedness efforts need to have a diverse representation of families in the community at the table from the start.
- Families are community experts, informed by their own experiences with emerging threats and their interaction with the system of care.
- Families are present in all areas of the system and should be able to access the system in a variety of ways that meet their needs.
- During interactions with any of the system areas, families are asked about their strengths and challenges in their social situations. These questions are posed by professionals in the system trained and familiar with social determinants of health.
Action Step 3: Strengthen Communication Systems
- Families and system partners need trusted information above all else.
- Relationships between system partners should be established before a threat emerges to facilitate more effective communication. There are ongoing efforts to maintain those relationships.
- There is a mechanism in place to have families with experience utilizing services related to emerging threats regularly assess content and communication strategies.
- Those who screen families “lead with the why,” explaining why questions are being asked, how the information will be used, and sharing reports developed using the data. Full transparency is necessary to maintain trust.
- The health information infrastructure supports access to information needed by system partners to support the health of the mother-baby dyad.
- Protocols and processes are in place to facilitate communication between system partners – including families.
- Technology – including telehealth – is used to increase access to care and improve health outcomes.
- All forms of communication – phone, text, email, social media, etc – are used to disseminate information.
- System partners proactively address racism and other forms of discrimination in their institutions; partners are transparent about these efforts.
Action Step 4: Build Strong Partnerships
- Strong partnerships are key to the effectiveness of a system of care for emerging threats.
- There are partnerships between system partners that are expected to be present in any effective system of care for infants and children: Families, pediatricians, obstetricians, education systems (including early care and education), and community services.
- Unexpected collaborators are also key to a system of care to support dissemination of trusted information and identifying the need for early access to care. Unexpected collaborators could include businesses, community innovators, community infrastructure systems, faith communities, and more.
- Relationships between system partners are built and maintained with intention and planning.
- Existing initiatives such as quality improvement collaboratives and SET-NET are engaged as partners to support ongoing assessment and improvement of the system.
- When partnerships are strong, effective linkages to community services occur and there is follow-up.
Action Step 5: Ongoing Evaluation of the System of Care
- An effective system of care that addresses emerging threats to infants and children needs engages in a continuous quality improvement process.
- There are established mechanisms for engaging families in the evaluation process. They provide feedback on all aspects of the system. They receive reports back on how their feedback was integrated.
- Stakeholders agree on a set of common metrics that will be used across the system to evaluate various aspects of system function including (but not limited to) ease of access to services, effectiveness of messaging, consistent follow-up on service referrals, ability to access needed information, satisfaction of partners related to communication, family satisfaction with system services, and family sense of equity in the system.
- There are regular, planned releases of evaluation results to the public.
Additional Considerations: Special Populations
Specific partners and approaches may be helpful to engage to best serve the needs of pregnant people and newborns. Some suggestions to consider can be found here: Perinatal State Preparedness System Partners (aap.org).
Children and youth with special health care needs (CYSCHN) will also require preparedness efforts that are tailored to their unique medical needs. These are discussed more here: Disaster Preparedness for Children and Youth with Special Health Care Needs (aap.org).
This project was supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $250,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by American Academy of Pediatrics, CDC/HHS, or the U.S. Government.
Last Updated
01/19/2024
Source
American Academy of Pediatrics