Student and Research
Shawnell Damon was a graduate student in the Cellular Molecular Medicine department while hired as a student employee at the University of Arizona’s Developmental Pediatrics. During her time there she worked on the Congenital Heart Defect (CHD) Study collecting data, improving case finding, and data analysis.
While conducting the CHD research, Protein Loss Enteropathy (PLE) was identified as an issue affecting some patients with single ventricle physiology. During her second year as a graduate student, Shawnell completed her thesis on the Systematic Review of the Etiology of Protein Loss Enteropathy. PLE is the enteric loss of proteins, that presents as a secondary comorbidity witnessed in patients post-Fontan procedure. The Fontan procedure was developed 1971 by Dr. Francois Marie Fontan to connect the systemic venous return to the pulmonary arteries.
This systematic review aimed to assess the risk factors, etiology, and treatment of PLE following the Fontan procedure. The risk factors associated with the development of PLE include: 1.)The chronic state of central venous hypertension, 2.) Single Ventricle (SV) Performance, 3.) Prolonged Cardiopulmonary Bypass Time and 4.) The type of SV anatomy. For the etiology of PLE, there were three prevailing hypotheses which include autoimmune/inflammatory response, cellular structure breakdown, and elevated arterial pressures causing lymphatic dysfunction. Lastly, the treatment of PLE includes dietary modifications, Heparin, Budesonide, and IV of immunoglobulin. The systematic review provided and assessed the clinical spectrum of CHD, specifically Single Ventricle defects, the Fontan Circulation, and PLE. The risk factors, etiology, and treatment of PLE provided a clinical framework for clinicians treating PLE patients post-Fontan procedure.
A Qualitative Examination of Families’ Experiences of Tube Feeding Children with Gastrostomy Tubes while in Community Environments
As a student in the Undergraduate Research Opportunity Consortium (UROC)-PREP program Jaclyn Larson sought to understand families’ experiences when feeding their child with a gastrostomy tube (g-tube) in community environments. Ten caregivers, including parents and foster parents, were interviewed to obtain their families’ experiences. Data for this study was collected using semi-structured and open-ended interviews and analyzed to find themes. Three overarching domains have been found so far; (1) primary family, (2) extended family, and (3) community. Many of the caregivers expressed how the primary family and/or extended family was not supportive of the use of the g-tube for the child, while other caregivers stated that their families were supportive and understanding. Caregivers were also asked to share their perceptions of how the community viewed tube feedings when they fed their child and whether or not the community was supportive. Within these domains are several subthemes that are currently being analyzed. Understanding the family experience can be useful for professionals across various disciplines (e.g., dietitians, physicians, etc.) when coaching families of how to incorporate tube feedings into their daily lives by sharing what techniques other families have used.
Exploring the feasibility of piloting a support group for parents of children with PANS who are in remission.