 | The 131st Annual Meeting (November 15-19, 2003) of APHA |
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| The 131st Annual Meeting (November 15-19, 2003) of APHA |
Ann D. Forsberg, MPH, New England Hemophilia Center, UMass Memorial Hospital, 119 Belmont Street, Worcester, MA 01605, (508) 334-6047, forsbera@ummhc.org, Susan Cutter, MSW, MPA, Penn Comprehensive Hemophilia Program, University of Pennsylvania Health System, Medical Arts Building, Suite 211, 39th and Market Streets, Philadelphia, PA 19104, Laurel McKernan, RN, Hemophilia Center, Dartmouth Hitchcock Medical Center, 1 Medical Drive, Lebanon, NH 03756, Dawn vonMayrhauser, MSW, LCSW, Social Work, University of Connecticut Health Center, 363 Farmington Ave., Farmington, CT 06030, Dawn von Mayrhauser, MSW, University of Ct Health Center, 263 Farmington Ave, Farmington, CT 06030, Regina B. Butler, RN, Hemophilia Treatment Center, Children's Hospital of Philadelphia, 34th Street and Civic Center Blvd., 4th Floor Wood Building, Philadelphia, PA 19104, and Elizabeth Holloman, RN, Hemophilia Center, Johns Hopkins University Medical Center, 720 Rutland Ave, Baltimore, MD 21205.
Introduction: Regions I and III of the federal hemophilia treatment center network (HTCs) developed a program for parents of young children with hemophilia, a rare, inherited, chronic disorder, to provide them with the skills and support to prevent complications. Geographic distance from HTCs and other families is often a barrier to accessing medical education and support networks.
Methods: Twenty-three HTCs collaborated to provide three conferences for parents of young children. The goals of the conferences were to supplement HTC’s education, explore the psychosocial impact of chronic illness, and develop a support network. Participants completed a program evaluation, and pre- and post-test knowledge assessment.
Results: 99 out of 109 participants completed pre and post-tests. At baseline, parents had the greatest knowledge of genetics (90%), signs of bleeding episodes (90%), and discipline (93%) and family issues (96%). The greatest increases in knowledge were: identification of life-threatening bleeds (41% to 89%), available HTC services (49% to 60%), advantages of comprehensive care (52% to 86%), and identification of community services (27% to 64%). “ Meeting other parents” ranked first in the qualitative survey.
Conclusion: Although families were seen at HTCs, many were unaware of HTC and community services. Most had a good understanding of parenting and basic medical issues. These conferences expanded participants’ knowledge of potential complications, treatment and available services. Conference participants have continued to maintain a peer support network. These conferences could serve as a model to develop programs for individuals with other rare health care conditions.
Learning Objectives:
Keywords: Children With Special Needs, Disease Prevention
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.