I/DD FAME Program Pilot Post Assessment

Transitional Healthcare Pathway for YSHCN: Community-Based Family Centered Transitional Care Program for Youth with Special Healthcare Needs, Vanessa Coppola, MS, APN-C, FNP-BC, Doctor of Nursing Practice student at Yale University School of Nursing.

Informed Consent: You are invited to participate in a translational research Doctor of Nursing Practice pilot project about healthcare transition for individuals with intellectual and/or developmental disabilities utilizing the concept of Family Empowerment. The goal of this pilot project is to help facilitate successful transition from pediatric to adult healthcare thru family empowerment. This pilot project is authored by and conducted by Vanessa Coppola, MS, FNP-BC, a doctoral candidate at Yale University School of Nursing. This pilot project is self-funded by the author and there are no funding agencies to disclose or conflicts of interest.

Participation in this study is voluntary.  If you agree to participate in this study, you would be interviewed about the healthcare transition for intellectually and developmentally disabled individuals and about family empowerment. Participating in this study may not benefit you directly, but it will help us learn how to improve healthcare transition for this population. Participation in this study is completely voluntary and you are under no obligation whatsoever to participate. If you participate in the study, you will receive $25 visa gift card for your time. The information you will share with us if you participate in this study will be kept completely confidential to the full extent of the law. 

There are certain criteria to participate in this survey. Participants will include English-speaking emerging adolescents or adults with special health care needs; or the parent, guardian, or decision maker of a YSHCN. Exclusion criteria include non-English speaking and adolescent or emerging adult status without at least one special health care need identified as an intellectual and/or developmental disability. Adolescents and emerging adults with special health care needs should participate as decision-makers in their own health care outcomes to the greatest extent of their ability provided parental consent is provided for those under the age of 18.

All information will be declassified and contain no personally identifiable information. All responses will be kept anonymous. This survey utilizes software by Momentive (Survey monkey). Please review their privacy policy here.https://www.surveymonkey.com/mp/legal/privacy/

By completing this survey, you acknowledge that participation is purely voluntary, and you have met the criteria as noted above. Your information will be anonymous and kept confidential. This pilot project poses little to no harm to the participants. While the investigator(s) will keep your information confidential, there are some risks of data breaches when sending information over the internet that are beyond the control of the investigator(s). By clicking okay, you acknowledge that you understand these terms and conditions and agree to participate of your own free will.