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¿Qué cambios quieres traer al mundo?
The National Hemophilia Foundation (NHF) strives to improve the quality of life for all persons with bleeding disorders. Through Steps for Living, NHF looks to create, implement, and evaluate a comprehensive online health management program for people throughout their life stages – newborns, kids, adolescents, adults, families, and the aging - affected by a bleeding disorder. By using the Internet, Steps for Living has the ability to reach people in large metropolitan areas as well as rural towns, barrier-free. Steps for Living will help to change the way people manage chronic disease by putting high quality information and education on self-management through life’s transitions, as well as networking opportunities, at their fingertips. Please see www.stepsforliving.hemophilia.org
¿Cuáles son las actividades principales de tu proyecto?
Since behavior patterns can be set early in life, NHF has focused on helping parents and their children adopt healthier behaviors, and gain confidence and skills in managing their bleeding disorder through Steps for Living. The program is split into four modules:
On the Steps for Living Web site, First Step (ages 0-8) focuses mostly on the basics of bleeding disorders, negotiating parent/provider relationships and childcare issues. Next Step (ages 9-15) provides information about working with schools; gaining independence at home (transitioning to home infusions and to self-infusions, etc.); and healthy decision-making (vacation/travel, organized sports, and nutrition); while Stepping Out (ages 16-25) will cover topics such as disclosure, dating, career choices, moving away to college and adherence.
The final module will be for healthy aging as this is the first time that this community has had an aging population due to better treatments and improved care. Issues for the aging include coordination among medical specialists as many in this age category have been infected with HIV and Hepatitis C through tainted blood products. Additionally, people in this age category have all the natural issues of aging to manage such as heart disease, hypertension, and arthritis to name a few, and it is important to educate this population regarding best practices in the ongoing management of these multiple morbidities.
Furthermore, NHF will create an on-line database of educational activities geared toward these different age groups that our network of 49 chapters throughout the US can implement. Chapters, in conjunction with medical representatives from their local hemophilia treatment centers, will be trained through a Train the Trainer program to run these educational activities at the local level.
Finally, NHF will mobilize its National Youth Leadership Institute (NYLI), a group of 18-25 year olds who have been trained in peer-education and leadership techniques. These young people will be deployed to bleeding disorder summer camps to implement an educational curriculum for younger youth. NHF relies heavily on the proven power of peer-education to reach the younger generations with important health education messages.
¿Qué es innovador acerca de tu iniciativa? ¿Cómo es que es un nuevo aporte al campo?
Steps for Living consists of several levels of engagement for affected families throughout the life stages. The first interaction most families have is through the interactive Web site where consumers will find information in user-friendly formats such as podcasts, interactive graphics and pop-up surveys. Secondly, NHF chapters and hemophilia treatment centers (HTCs) will be trained by NHF and provided in person educational activities to implement with consumers, allowing them to connect with others like themselves in a supportive environment in which they can learn, share their feelings, tell their stories, network, and ask questions.
Steps for Living is a 'first' for the bleeding disorders community. Bleeding disorders affect a relatively small percentage of the population in comparison to other chronic illnesses. Thus, it is often labeled as an 'orphan disease' and it is difficult to maintain an active community when distances are so vast. Using the Internet connects those affected and creates a larger sense of community support. Chapters and HTCs across the country work to address these same issues, however NHF is in a unique position to provide this service on a national level rather than a local or regional level.
Moreover, NHF hopes that Steps for Living can serve as a model for other orphan disease organizations dealing with similar challenges. We also know that our website is visited often by international users, thus NHF will work to have the Web site translated into Spanish, thus expanding the reach of this project to a large portion of the world.
Háblanos de la comunidad con la que estás trabajando, por ejemplo, sus condiciones económicas, las estructuras políticas, normas y valores, las tendencias demográficas, la historia y la experiencia con los esfuerzos de compromiso.
Bleeding disorders affect all people regardless of sex, nationality, religion, socioeconomic status or geographic location. NHF serves the needs of men, women, children, caregivers, and professionals, and has a long history of serving this diverse community through educational events, leadership opportunities, and advocacy.
The toll of viral infection on this population, starting in the 1980’s when blood-derived treatment products stopped bleeds but also transmitted HIV and HCV, has been well-documented. The HIV/AIDS epidemic and its widespread publicity about hemophilia as one of the first infected groups; and, to a lesser extent, hemophilia as a hopeful avenue for successful outcomes in gene therapy have contributed to the public’s awareness. By contrast, lack of awareness of Von Willebrand's Disease (VWD), the most prevelant bleeding disorder, in the general population and the misperception, even among healthcare providers, that women cannot have a bleeding disorder, have contributed to significant under diagnosis of VWD.
NHF has more than a 60 year proven track record of engaging and advocating for this population. NHF's model of working with advisory groups from all our constiuencies (patients, medical providers and chapter leaders) keeps us highly informed and at the cutting edge of emerging issues within the community.
Compartir la historia del fundador y lo que inspiró al fundador para iniciar este proyecto
This project began as a collaborative effort from the Education Department at NHF. In 1999-2000 NHF's Education Department, with the CDC and Macro International did the first random telephone survey of the hemophilia population in the USA. From that, they developed the National Prevention Program and implemented 10 years of programming to reduce the secondary complications of bleeding disorders, mainly through the Do the 5! messages. In 2009, NHF, CDC and Macro International did a follow-up random telephone survey to assess progress. Based on the data from these surveys as well as the input from our advisory groups, NHF embarked on creating Steps for Living.
Our data showed that more and more people access the internet for their health information and want that information delivered to them in creative, interactive ways. Second, our survey showed us that people go to their medical providers for information and resources, thus prompting us to ensure that anything downloaded or printed from the Steps for Living Web site would be unbranded by our industry supporters as medical providers will often not distribute such branded health education materials. Third, that because bleeding disorders are so rare, chapters and HTCs are unable to reach a large section of our population that live outside large metropolitan centers and that we needed to create something everybody could access. Although NHF understands that not everyone has a computer or an internet connection, we felt this was the most barrier-free way of providing necessary education to all.
