Reminiscences of Regina Butler : oral history, 1990; Oral history of Regina Butler, 1990
Abstract
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 commu nity; 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
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Caregivers; Safe sex in AIDS prevention; Nurses; Butler, Regina; National Hemophilia Foundation