Valentine Group Health
Ellen Giarelli, EdD, RN, CRNP
Associate Professor
Drexel University, College of Nursing and Health Professions
Note: Thanks to Dr. Romy Nocera, Director of Clinical Research in the Emergency department of Hahnemann University Hospital, for providing the photographs for this program.
Background:
Dr. Giarelli is an advanced practice nurse with a Post-doctorate in Psychosocial Oncology and HIV/AIDS from the University of Pennsylvania. She is Associate Professor in the Doctoral Nursing Program at the College of Nursing and Health Professions at Drexel University. She has an adjunct appointment at the University of Pennsylvania, School of Nursing, and an external advisor for the UPENN Center for the Integration of Genetic Health Technology (CIGHT).
Dr. Giarelli has over 15 years experience as a principal investigator conducting research with patients, family members, and health care providers, including multiple intervention studies. For the past decade, she has studied the life-long medical, psychological, and social problems, and healthcare needs of people with genetic disorders diagnosed in childhood, that require life-long enhanced surveillance and self-management. Study populations include, individuals with Marfan syndrome, cancer syndromes such as familial adenomatous polyposis (FAP), multiple endocrine neoplasia type 2a MEN2s), and autism spectrum disorder (ASD).
Dr. Giarelli has been Principal Investigator or Co-investigator on multiple projects involving these populations, including an R21 funded by the NINR/NICHD (1R21NR009661-2) to study Self-management of Chronic Genetic Disorders, and the Philadelphia Health Care Trust. She was Principal Investigator for the Pennsylvania Autism and Developmental Disabilities Surveillance Program (PADDSP) funded by the Centers for Disease Control and Prevention, and Co-I for the CDC- Funded Study of Epidemiology of Early Development (SEED, PI: Pinto-Martin).
She is Editor of a book published in April 2012 by Springer Publishing, called Nursing of Autism Spectrum Disorder: Evidence-based Integrated Care across the Lifespan. This is the only text, to date, that addresses nursing care of people with autism spectrum disorder (ASD) by examination professional nursing skills applied to the specific problems arising from the delivery of health care to people with ASD. She is coordinator of a newly launched Certificate program in the Integrated Nursing Care of People with ASD.
She is an expert in Grounded Theory and other qualitative methodologies, as well as strategies for public health surveillance of autism spectrum disorder. As President of the International Society of Nurses in Genetics (ISONG) in 2011-2012, and a three- term Chair of the ISONG Ethics and Public Policy Committee, she has lectured extensively on the ethical, legal and social implication of advances in genetic/genomic sciences.
Overview:
This show will provide information on the skills and knowledge all Health Care Providers (HCP) should have in order to provide best-practice care across the life-span and in all service settings. Dr. Giarelli will describe a unique Post-baccalaureate program designed for nurses and offered at Drexel University College of Nursing. A comprehensive case management approach takes a holistic view of patients and families to identify ways to anticipate problems, and mitigate the negative effects of the disorder on family dynamics. An integrated approach promotes everyone’s health and well-being. The discussion will include a description of the ASERT case management program at the AJ Drexel Autism Institute, which now includes a nurse on the team.
3 Key Points:
- To provide appropriate care, healthcare professionals must have a working knowledge of the complex of symptoms of ASD and the associated disorders.
- Nurses and other HCP can learn communication skills designed specifically for people with ASD
- Best care involves patients, family members, and HCPs. An integrated approach to care uses the expertise of a team of professionals and each will anticipate the impact of the disorder and consider the whole family when designing treatment plans.
