Ginny L. Schulz, PhD, RN, CPNP-PC, is a pediatric nurse practitioner in stem cell transplant and cellular therapy at Washington University School of Medicine in St. Louis, Missouri, USA. Her recent doctoral work at University of Missouri Sinclair School of Nursing in Columbia, Missouri, USA, focused on treatment decision making and decisional conflict in families of children and adolescents with sickle cell disease considering stem cell transplant using case study methods. This underutilized research method demonstrated an innovative approach to investigating complex family processes. Her doctoral work was supported by the American Cancer Society Doctoral Degree Scholarship in Cancer Nursing and a Small Project Award from the Center for Patient-Centered Outcomes Research at the University of Missouri School of Medicine. Through this work and other collaborative projects, she has worked with multiple family, decision, and communication scientists from numerous disciplines to lay the foundation to her program of research in pediatric and family communication and treatment decision-making. As she continues to build her program of research, her emphasis will shift to exploring the ethics of child voice and family-level health disparities in communication and treatment decision-making.  For more information, contact IFNA member Ginny Schulz.

Roberta L. Woodgate, RN, PhD, (she/her/hers) is a Distinguished Professor in the College of Nursing, University of Manitoba, Canada. Roberta holds a Tier 1 Canada Research Chair Award in Child and Family Engagement in Health Research and Healthcare. Her research program, IN•GAUGE, embraces a dynamic approach to: involve children, youth and families in the research process; interact with researchers and knowledge users in the research, intervention, and evaluation process; and be innovative in the use and exchange of knowledge with the combined goal of improving the health and well-being of children and youth.

Roberta embraces a rights-based approach to research that recognizes that the voices of children and youth have in the past been silenced in research and in the decisions affecting their lives, including their health, and advocates for an approach that recognizes that children and youth are key actors in their own development, with the right to participate in decisions that affect them in accordance with their evolving capacities. Roberta researches the perspectives and lived experiences of children and youth across a wide range of health conditions (e.g., mental illnesses, disabilities, complex care needs and conditions, chronic illnesses) and life challenges (e.g., transitioning from the child welfare system, accessing respite services) as well as various communities (e.g., Indigenous youth and their families and newcomer families). By means of an integrated knowledge translation approach, Roberta leads research teams that support interdisciplinary expertise and the involvement of research end-users including clinicians and decision-makers, but importantly that centre the expertise of children, youth, and families as partners in research.

Dr. Woodgate’s Research Website: www.ingauge.ca

Twitter: https://twitter.com/WoodgateRoberta

LinkedIn: https://www.linkedin.com/in/robertawoodgate/

YouTube: https://www.youtube.com/channel/UCUvZpphusBjwmswdRk4m-dw

Beth Skelton, RN, MSN, CPNP-PC, is a PhD candidate at the University of North Carolina at Chapel Hill (USA) and a member of the IFNA Student Engagement Group.  Beth is a member of Family and Down syndrome research group led by Dr. Marcia Van Riper, which includes study participants from 50 countries and focuses on studying adaptation and family management in the context of a family member with Down syndrome. Beth has worked with Dr. Van Riper on other studies funded through the University’s Dhillon Jordan Shah Innovation Fund and the School of Medicine’s Innovative Sleep Research initiative comparing family adaptation to having a child with Down syndrome, a congenital heart condition, or both. In addition to her work with Dr. Van Riper, Beth has worked as project manager for Dr. Louise Fleming on a study funded by the Pediatric Endocrine Nursing Society to create a mobile health app application to support persons with adrenal insufficiency.  The combination of these experiences contributed to the development of her dissertation study addressing care coordination needs of families of children with Down syndrome and the development of a mobile health application to support parents’ care coordination efforts. Beth is fortunate to have IFNA members Dr. Marcia Van Riper, Dr. Kathleen Knafl, Dr. George Knafl, Dr. Louise Fleming and Dr. Veronica Swallow on her dissertation committee. For more information, contact IFNA member Beth Skelton.

Twitter: https://twitter.com/bethskelton11

LinkedIn:  https://www.linkedin.comin/beth-skelton-a870a14b/