My program of research revolves around the active engagement of children both in health care research and practice through the development of child-sensitive approaches to data collection and assessment. To date, much of my work has centered on the integration of children's drawings into the interview process, or what I refer to as the Draw-and-Tell Conversation (DTC). This journey has taken me into conversations with children about fear, disease causation, risk, and/or inheritance, and health-related literacy. I am currently focused on how we engage children in the assessment and management of their pain experiences, both acute and chronic, and how current approaches impact children's life and future pain experiences. I am always in awe of the degree to which children are able to communicate and the nuanced insights they provide. To learn more about my work and focus:
Listen to this tutorial developed for and by children for health care providers using a new prototype app - DrawnTogether©
Listen to my talk, entitled Understanding Genetics: With a little help from Harry Potter and friends, at The University of Florida's Health Science Center Library who was hosting "Harry Potter's World: Renaissance Science, Magic, and Medicine," a traveling exhibit from the National Library of Medicine. The talk uses characters and stories from the Harry Potter series to explain complex genetic concepts, including patterns of inheritance, variable expressivity, incomplete penetrance, epigenetics and eugenics.
- B.S.N., The Ohio State University 1977
- M.S.N., Yale University 1979
- Ph.D., Oregon Health & Sciences University 2005
- Post doctoral Fellowship in Clinical Genetics - University of Iowa
- NIH/NINR - Summer Genetics Institute
- "Testing the committee approach to translating measures across cultures : Translating primary communication inventory from English to Japanese." Nursing and Health Sciences In: , Vol. 18, No. 4, 01.12.2016, p. 450-456.
- "Editorial for the Genetics Issue." Journal of Pediatric Nursing In: , Vol. 31, No. 1, 01.01.2016, p. 1-2.
- "Diabetes self-management : Using the colored eco-genetic relationship map to assess social support." Nursing Research In: , Vol. 64, No. 2, 25.03.2015, p. 111-116.
- "Consulting with children in the development of self-efficacy and recall tools related to nutrition and physical activity." Journal for Specialists in Pediatric Nursing In: , Vol. 20, No. 1, 01.01.2015, p. 21-28.
- "Using the "Newest Vital Sign" to assess health literacy in children." Journal of Pediatric Health Care In: , Vol. 28, No. 2, 03.2014, p. 165-171.
- "A committee approach maintaining cultural originality in translation." Applied Nursing Research In: , Vol. 27, No. 2, 2014, p. 144-146.
- "The disclosure of incidental genomic findings : An "ethically important moment" in pediatric research and practice." Journal of Community Genetics In: , Vol. 4, No. 4, 10.2013, p. 435-444.
- "Strategies used by teens growing up in families with huntington disease." Journal of Pediatric Nursing In: , Vol. 28, No. 5, 09.2013, p. 464-469.
- "Disclosure of incidental genomic findings involving children : Are we making progress?" Personalized Medicine In: , Vol. 10, No. 6, 08.2013, p. 519-521.
- "A closer look at the recommended criteria for disclosing genetic results : Perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs." Journal of Genetic Counseling In: , Vol. 22, No. 4, 08.2013, p. 544-553.
- "Children 'draw-and-tell' their knowledge of genetics." Pediatric nursing In: , Vol. 39, No. 4, 07.2013, p. 173-180.
- "'Information is information' : A public perspective on incidental findings in clinical and research genome-based testing." Clinical Genetics In: , Vol. 84, No. 1, 07.2013, p. 11-18.
- "Video-Mediated Communication to Support Distant Family Connectedness." Clinical Nursing Research In: , Vol. 22, No. 1, 02.2013, p. 82-94.
- "Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting." Patient Education and Counseling In: , Vol. 90, No. 1, 01.2013, p. 133-138.
- "The importance of patient engagement." Genetic Testing and Molecular Biomarkers In: , Vol. 17, No. 9, 2013, p. 649.
- "Researcher and institutional review board chair perspectives on incidental findings in genomic research." Genetic Testing and Molecular Biomarkers In: , Vol. 16, No. 6, 01.06.2012, p. 508-513.
- "A practical first step to integrating genetics into the curriculum." Journal of Nursing Education In: , Vol. 51, No. 5, 05.2012, p. 294-298.
- "Development of the HD-Teen Inventory." Clinical Nursing Research In: , Vol. 21, No. 2, 05.2012, p. 213-223.
- "Arts-based data collection techniques used in child research." Journal for Specialists in Pediatric Nursing In: , Vol. 17, No. 1, 01.2012, p. 3-9.
- "Supporting face-to-face communication between clinicians and children with chronic headaches through a zoomable multi-touch app." Conference on Human Factors in Computing Systems - Proceedings. 2012. p. 2609-2618.
- "Informed consent and genomic incidental findings : IRB chair perspectives." Journal of Empirical Research on Human Research Ethics In: , Vol. 6, No. 4, 12.2011, p. 53-67.
- "We are different : Learning needs of accelerated second-degree nursing students." Nurse Educator In: , Vol. 36, No. 5, 09.2011, p. 214-218.
- "Stop, look, and listen : revisiting the involvement of children and adolescents in genomic research." Annual review of nursing research In: , Vol. 29, 2011, p. 133-149.
- "Factorial structure of the perception of risk factors for type 2 diabetes scale : Exploratory and confirmatory factor analyses." Journal of Evaluation in Clinical Practice In: , Vol. 16, No. 6, 12.2010, p. 1096-1102.
- "Am I Sure I Want to Go Down This Road? Hesitations in the Reporting of Child Maltreatment by Nurses." Journal for Specialists in Pediatric Nursing In: , Vol. 15, No. 4, 10.2010, p. 317-323.
- "Using the colored eco-genetic relationship map with children." Nursing Research In: , Vol. 58, No. 5, 09.2009, p. 304-311.
- "Growing Up at the Intersection of the Genomic Era and the Information Age." Journal of Pediatric Nursing In: , Vol. 24, No. 3, 06.2009, p. 189-193.
- "Children and nature-deficit disorder." Journal for Specialists in Pediatric Nursing In: , Vol. 14, No. 1, 01.2009, p. 73-75.
- "Experiences of teens living in the shadow of Huntington disease." Journal of Genetic Counseling In: , Vol. 17, No. 4, 08.2008, p. 327-335.
- "Facilitative Drawings With Children Versus Human Figure Drawings." Journal of Pediatric Nursing In: , Vol. 22, No. 6, 12.2007, p. 430.