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In the early 1990s, a handful of donor families took their message across the country in search of support and understanding. The National Kidney Foundation (NKF) listened to their concerns and, with help from donation and bereavement professionals, established the National Donor Family Council (NDFC). With the creation of the Council and its resources, the care and support of donor families has been forever transformed.
The Council's history is rooted in perseverance, guided by doing "what is right" over "what is tradition." Its creation took just a few impassioned families and several healthcare professionals who were willing to challenge accepted practices in donor family care.
Though controversial at the time, the standards of care championed by the NDFC soon became the standards of care across the nation. For the first time, donor families were included in making decisions and developing programs that directly affected them. Finally, donor families were recognized as the real experts in donor family care.
In 1989, the NKF invited a donor family member to participate in a national task force investigating ways to increase donation. For the first time, donor families - those most intimately involved in the donation process - were able to help plan and serve as faculty for a program directly affecting their care. The program, Making the Critical Difference (MCD), taught nurses how to support families during the entire donation process, from the family's first interaction with the healthcare team through their initial bereavement.
Making the Critical Difference incorporated For Those Who Give and Grieve, a bereavement book for donor families that included a survey. Through the survey, the NKF began to hear from hundreds of families about their donation and hospital experiences. Families completed the survey questions and went on to write volumes, asking questions and pleading for support.
It was evident that families needed more. In 1991, For Those Who Give and Grieve - titled after the book - became the first and only national newsletter for donor families. A quarterly subscription is complementary and available for all families and healthcare professionals.
The newsletter quickly became a source of education and support, providing information about donation and grief as well as opportunities to honor loved ones through stories, poems and photos. Through the Donor Family Friends column, families could connect and support one another via pen pals from Connecticut to California to Wisconsin and so on.
The newsletter brought forth an avalanche of calls and letters from families in search of information and support. The logical next step was to form a national organization for all donor families. In 1992, the National Kidney Foundation formed the National Donor Family Council (NDFC).
In 1992, the NDFC, in conjunction with researchers at the University of North Carolina, conducted the first national donor family survey. Over 1,300 families responded, allowing the NDFC to develop resources and programs based on the needs donor families identified in the survey.
The National Donor Family Quilt was created in 1995 to provide families an opportunity to remember loved ones in a special and creative way. The Quilt has grown to over 20 panels representing 1500 donors and is always open to new families. It travels the country to promote organ and tissue donation awareness and honor those who have given the gift of life. Many recovery organizations have since developed local quilts, offering families additional opportunities to memorialize loved ones.
The 1992 survey indicated a need for further research regarding communication from healthcare professionals to donor families and between families and transplant recipients. The Council conducted studies revealing inconsistencies in practice among professionals that needed to be addressed.
In 1995, thirteen national health organizations accepted the Council's invitation to meet in New York to discuss communication issues. By 1997, the group had developed the National Communication Guidelines , clearly stating that donor families and transplant recipients should be provided communication to meet individual needs, resting the decision to communicate with individuals and not healthcare professionals. The Guidelines have led the way to open communication between donor families and recipients in most areas of the country.
In 2003, representatives will meet again at the National Kidney Foundation's New York office to review and update the Guidelines.
The National Donor Family Council web site has been instrumental in raising awareness and supporting families. With over one thousand visitors each month, the site continues to expand as more families find the NDFC online. Since its launch in 1996 and redesign in 2002, www.donorfamily.org is always in development. We appreciate suggestions about the kinds of things you would like to see online.
The National Donor Family Council has over 11,000 members, including organ and tissue donor families and professionals. Over 50,000 families subscribe to the newsletter, and hundreds request more Council information each month. Dedicated volunteers and NKF staff have developed resources, programs and memorial events to support donor families and always welcome your thoughts on how we can best help you.