aThe DaAmbrosio story portrays many of the trials and tribulations associated with raising two daughters with a bleeding disorder, highlighting the critical role of family support and advocacy. Their story underscores the importance of parents fostering personal competencies and selfefficacy for early recognition of bleeding problems and for obtaining prompt and effective treatment. But the vivid unfolding of their narrative reveals disturbing fl aws in our healthcare system where professionals all too often fail to hear the voices of the real experts, patients and their families. Embedded is judicious advice not only for individuals and their families, but also notably for healthcare providers. Emanating from these personal experiences is a call for continued development of strong interdisciplinary healthcare teams that embrace a holistic care perspective and a capacity to coordinate team functions to address the complexities of treating bleeding disorders and their associated physical risks, as well as related social and emotional ramifi cations. While there are challenging journeys ahead for this family and others, I envision smoother roadways given the insight and wisdom captured in this compelling chronicle.a aArthur R. Thompson, MD, PhD Co-Director, Hemophilia Treatment Center, Puget Sound Blood Center, 1973-1987 And Director, 1987 a 2008. Professor Emeritus, Medicine and Hematology, University of Washington, Seattle, WashingtonI folded up the metal frame and put just the mattress on the floor. Ouch! ... It was high time I had a self-inflating mattress for these hospital slee- povers. ... I needed to write this down in my instruction manual and take it up with the administrators.
|Author||:||Cheryl Nineff D’Ambrosio|
|Publisher||:||iUniverse - 2010-02-23|