“It’s as if he is adrift and I am his anchor.” The Role of Parents and Family Care Givers in Life-long care for autism spectrum disorders (ASD)

Ellen Giarelli, EdD, RN, CRNP
Associate Professor
Drexel University, College of Nursing and Health Professions

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:

Life-long health needs and access to care: The discussion will address the present health care system and its ability/inability to meet the health care needs of people with ASD. It will highlight the statistics that adults with ASD are less likely than those without ASD to receive preventive health care such as cancer screening. This is due, in part, to their problems with communication and socialization, and difficulty processing sensory stimuli. Impact on patient and family: The discussion will highlight the experiences of family caregivers (parents) and siblings of people with autism.  We will discuss how they may suffer from high levels of psychological stress, and financial and other burdens that might lead to “compassion fatigue”.

3 Key Points:

1. Expect that ASD, as a chronic pervasive disorder, has symptoms that will influence every aspect of the life of the individual and each member of the family.
2. People with ASD may not receive adequate preventive health care
3. Parents are the principal advocates, mothers are a stabilizing force