Why stay? Resilience in haemophilia physicians in the 1980s

Abstract

Aims:The occurrence of AIDS in 1980s posed difficult problems for haemophilia clinicians worldwide. The impact of these events is substantial, and the events continue to be subject to judicial proceedings and publications. The stance of haemophilia physicians, particularly their professional resilience, is of importance and remains unexamined.Methods: Deploying oral histories informed by literature review of scientific publications and past inquiry reports, this qualitative study addresses how physicians continued to work in haemophilia during those years and attributes that contributed to their resilience. Results and conclusions:Experience and role in laboratory aspects were of value in handling and communicating uncertainty. Collegiality, peer support and scholarship were important in sustaining their roles, in clinical decision-making and re-instating confidence in the therapeutic relationship during the toughest years of their practice. K E Y W O R D S

Witnessing the 1980s

“…Both the essays harp the tune that the tragedy of AIDS strengthened the alliance between persons with haemophilia and their caregivers in the context of the specialized treatment centres 1,2 . In general it was so, but there were a few notable exceptions, and I have personally witnessed one in France.…”

“…Recently in this journal, two essays, from Europe and North America, 1,2 did independently feature the emotions but also the resilience displayed in the 1980s by the members of the haemophilia care team (physicians, nurses, social workers, phycologists) at the dramatic times of the unexpected appearance of AIDS: particularly in the early period, when so much uncertainty was looming large on the causes of this previously unknown scourge and how to handle its dire consequences. The dismay and disarray were particularly cogent considering that haemophilia treaters had witnessed so much success and progress in the previous 1970 decade, with the dramatic improvements in life expectancy and quality of life of their patients owing to the availability of freeze‐dried plasma‐derived coagulation factors, that had allowed not only the implementation of self‐treatment at the doorstep but also the prevention of bleeding episodes beyond their episodic treatment.…”

“…Sekhar and Jadhav 1 who, at variance with Man‐Chiu Poon, 2 were not personally involved in haemophilia care in that period, correctly point out that even though the HIV/AIDS epidemics was unexpected for the community of haemophilia treaters, there was much awareness of the risk of liver disease due to the transmission of hepatitis viruses by large pool plasma concentrates, and particularly of the post‐transfusion event called at that time non‐A, non‐B hepatitis. Awareness of the risk was present among physicians, in spite of the fact that chronically infected patients were often asymptomatic, so that the undue and inaccurate term of transaminitis was widely employed.…”