Oral history interview with Regina Butler, 1990

Scope and Contents

Involvement in creating Hemophilia Patient/Family Model; education of families regarding home care; "cyclical" nature of hemophilia community; data collection; Philadelphia Child Guidance; working with families of people with hemophilia; relationship between gay and hemophilia communities; use of Factor VIII concentrate versus cryoprecipitate in children; early responses to AIDS in hemophilia community; emotional responses to AIDS among families and caregivers; changes in make-up of hemophilia caregiving team; cooperation between area hemophilia treatment centers; involvement in NHF Nursing Committee: NHF Nursing Committee Educational Resources Project; development and use of Patient/Family Model; involvement of families of caregivers; high number of female hemophilia care providers; "safe sex" issues in adolescent people with hemophilia; changes over time in hemophilia nurse's role; current treatment for newly diagnosed people with hemophilia; relationship with Centers for Disease Control and with Maternal Child Health Bureau; possibility of future cue for hemophilia via genetic research; use of synthetic blood products to treat hemophilia

Subjects

• AIDS (Disease)--United States--History.
• Butler, Regina--Interviews.
• Caregivers.
• Hemophilia--Political aspects.
• Hemophilia--Social aspects.
• Hemophilia--United States--History.
• Interviews.
• National Hemophilia Foundation.
• Nurses--Interviews.
• Oral histories (document genres)
• Resnik, Susan, 1940- interviewer.
• Safe sex in AIDS prevention.

Access Conditions

Copyright by the Trustees of Columbia University in the City of New York, 2016