The THRIVE KiDs research group, led by Dr. Taylor House, focuses on enhancing the quality of life and quality of care for children with chronic kidney disease by integrating palliative care principles into treatment.
Palliative care is holistic care focused on alleviating the symptoms and stress accompanying a serious illness and improving quality of life for the child and their family. Chronic kidney disease is an unremitting illness that impacts all aspects of the child and the family’s life, yet palliative care needs remain unmet for this population. For example, physical symptoms associated with chronic kidney disease can vary and co-occur, including swelling, nausea, vomiting, constipation, fatigue, sleep difficulties, itching, and pain. With repeated medical procedures, major surgery, and unpredictable health changes, psychosocial distress is also prevalent, impacting these patients’ mental health. Children with chronic kidney disease and their families also have a need for high-quality serious illness communication that elicits and incorporates their values into their care plan development. Integrating principles of palliative care into routine nephrology care offers the chance to minimize these burdens and enable the flourishing of children with chronic kidney disease and their families.
Our current projects specifically target this unmet need for high-quality serious illness communication as families navigate the journey of chronic kidney disease, often starting from care received in the neonatal intensive care unit (NICU) to kidney transplant and ultimately transition to adult care. Through mixed methods research, we are developing communication interventions designed to enhance communication among children with kidney disease, their caregivers, and their medical team members; have their palliative-focused needs better met; increase self-efficacy and engagement; and ultimately improve health outcomes. We are interested in gaining the perspectives of children with kidney disease, their trusted caregivers, and their medical team members to develop communication interventions that are useful and effective for all stakeholders.
Q&A with Taylor House, MD, MS, assistant professor, Division of Nephrology Hometown: Marmaduke, Arkansas Educational/professional background: I earned my undergraduate degree from Arkansas State University and my MD from the University of Arkansas for Medical …December 9, 2022
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