Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)

Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)

Thienprayoon R; Lord BT; Siedman J; Hauer J

Journal of Pain and Symptom Management

2023

Palliative Care

Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and parental needs at all stages Design thinking methodology is powered by empathizing with patient/family experiences to articulate meaningful problems, distill themes to ideate solutions, and frame and design plans to implement solutions. In 2020, the palliative care team at Cincinnati Children's Hospital Medical Center (CCHMC) worked with a team from the Live Well Collaborative (LWC) to apply design thinking methodology to pediatric palliative care. The LWC is a nonprofit organization whose purpose is to apply design thinking methodology to co-create innovations aimed at improving health. Interviews of palliative care patients and their caregivers revealed an unmet need for patient- and family-centered educational tools to help visualize disease trajectory, improve patient and parent agency with medical recommendations, and improve quality of life and future planning. In response, a web-based Journey Map application was created. In 2021, the LWC team focused the Journey Map tool for use by families of children with severe neurologic impairment (SNI) that 1) maps points in the trajectory of a patient with SNI across their lifespan, 2) visualizes and explains the medical stages of SNI, 3) focuses on parental psychosocial support and needs, and 4) infuses the palliative care voice and concepts throughout. As the SNI Journey Map was created, CCHMC partnered with Courageous Parents Network, a nonprofit organization dedicated to supporting parents of children with serious illness, and Dr. Julie Hauer, a pediatric palliative care physician specializing in the care of children with SNI, to ensure that the Journey Map tool would be truly parent-focused and reach the greatest audience of parents and clinicians nationally. The Journey Map tool is the result of an innovative collaboration between academic and private palliative care clinicians, local and national nonprofit organizations, and parents. This unique tool will be hosted on the Courageous Parents Network website for perpetuity.

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April List 2023