The Problem Parents and caregivers of children needing pediatric palliative care (PPC) or hospice care (HC) often struggle to find and access local resources. Healthcare providers may also be unaware of available PPC and HC. To improve access and awareness, Dr. Daley and colleagues used Mapme© and REDCap© to identify, examine and catalog PPC and HC resources across Pennsylvania. The Approach This resourceful project builds on multiple recent initiatives led by Dr. Daley and the Pediatric Palliative Care Coalition of Pennsylvania. It leverages two web-based platforms— Mapme© and REDCap©—to identify and organize available pediatric palliative care (PPC) and hospice care (HC) resources. The goal is to improve awareness and access to PPC and HC services for parents, caregivers and clinicians across Pennsylvania. Expanding Access to Pediatric Palliative Care for Caregivers Short Term Impact Data collected from clinicians and caregivers to inform publicly accessible resource databases in Pennsylvania. The data also supported the creation of an interactive MapMe© resource map. Longer Term Impact Pediatric palliative care groups in two states are seeking to replicate the surveys and maps, with Dr. Daley and colleagues actively supporting these efforts. Societal Impact Funding will support the expansion of a webbased initiative that improves access to pediatric palliative and hospice care resources across Pennsylvania. This project enhances the accessibility of critical support services for families, caregivers and clinicians. Grounded in principles of equity and accessibility, the initiative offers societal benefits in the following areas: Community/Culture: Help patients, families, caregivers and providers access local resources. “When you have a chronically ill or terminally ill child, every ounce of energy is devoted to caring for the basic life needs of your child, so finding and obtaining resources, no matter how important they may be, is often an overwhelming and exhausting task for the parents and caregivers of children receiving palliative and/or hospice care.” Sean M. Daley, PhD, MA Data Driven Innovation: Web-based software to enhance access to health care resources. For more information visit https://health.lehigh.edu/research-partners or email INRSRCH@lehigh.edu 6
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