Jackelyn Boyden

Discipline: Nurse

Funding awarded to: University of Pennsylvania

Advancing Health Equity and Healthcare Quality in Home-based Pediatric Palliative Care

Home is the primary, and often preferred, site of care for many children living with serious illness in the U.S., yet parent/family caregivers are challenged by gaps in the home-based system of care and by the social determinants of health (SDOH) that exacerbate the negative impact of serious illness. Consequently, families, particularly those from historically marginalized, lower-income neighborhoods or who speak languages other than English, experience reduced access to high-quality home-based care, leading to greater care burden, higher symptom burden, and lower quality of life. Timely and tailored clinical actions are urgently needed to support children and families at home. While pediatric palliative care (PPC) teams are uniquely poised to help address these difficulties, few teams offer home services and care is often provided without information about families’ day-to-day experiences and needs. A clinical information system for digitally collecting and monitoring families’ home-based PPC experiences and needs by PPC teams may improve communication, better tailor care, and improve child/family outcomes. In this project, I plan to partner with families of children with serious illness and PPC clinicians to design and evaluate a home-based PPC clinical information system, with particular consideration for the SDOH that may impact future implementation and sustainability of this system.

My vision for the field of pediatric palliative care (PPC) is that all children living with serious illness and their families can get the care they need, where they need it, and that children and families can feel supported, comforted, and hopeful, even in the face of serious illness, in the place they call home. I believe that additional research and leadership development at this point in my career is pivotal for enhancing my ability to study and improve the care of children and families, as well as to help build a community of future PPC scholars dedicated to this work. Thus, as a Sojourns Scholar dedicated to PPC, I seek to a) advance my skills in human-centered, health equity-focused research within PPC; b) grow my leadership skills to help mentor and develop the next generation of PPC scholars; and c) build my network of national palliative care leaders to help impact clinical care and policy. Supported by this Sojourns Community during this Sojourns Scholar Leadership Program, I seek to grow as a leader to help advance equitable, high-quality care for all children living with serious illness and families in their homes and communities.