This paper describes the current status of counselling for HIV-positive haemophiliacs at a haemophilia centre in Japan. Clinical experience with 23 HIV-infected haemophiliacs (all male, age range 16-56, mean 29.9 years), 22 family members (eight couples of parents, one grandmother, five siblings) and nine sexual partners (five wives and four girlfriends) between April 1990 and February 1994 is detailed. Methods of counselling consisted of individual counselling in 32, couple counselling in eight and family counselling in three cases. Indications for counselling consisted of fear of or shame of HIV infection in 37, concern for the family in 21, risk of transmitting HIV to sexual partners in 12, fear of death and dying in 12, future career and family life in seven, interest in treatment options in five, daily life style in 10, parents' feeling of guilt over the infection in five cases, lack of knowledge of haemophilia, HIV infection and AIDS in seven, and bereavement in two cases. A total of 200 counselling hours were provided. Consequently, pending disclosure of HIV infection was successfully completed in five, disclosure of HIV infection to the sexual partner by the patient was facilitated in two, the patient-family relationship improved in nine, and smooth transition of care to the adult in-hospital unit was achieved in two patients. Our experience in Japan clearly verifies the importance of psychoeducational counselling for HIV-positive haemophiliacs and their family as well as sexual partners.
Our findings suggest that in Japan, HIV patients with malignancies have difficulties obtaining hospitalization at a palliative care unit, which is likely due to a lack of experience among the professionals in treating such patients as well as a lack of knowledge about HIV.
One of our objectives in establishing the Hemophilia Center was to create a model of a total care system for chronic diseases which develop in the childhood and continue through adulthood. We also believe that the comprehensive medical care system should be introduced not only for the care of hemophiliacs but also for those with every chronic refractory disease. It may be a surprise that in a university hospital, which is likely to lack cooperation between departments, this kind of cross sectional support system, even extending to activities outside the hospital, has been continued. This success owes much to the understanding and consideration by successive Directors of the Hospital and the Professors (Directors) of every department, the enthusiastic efforts by members of the Center who have continued their volunteer work for the purpose of improving the QOL of patients, and the cooperation by students of the Volunteer Study Club. We also have to mention the advice and guidance by Dr. Minoru Inagaki (now at the National Children's Hospital) who established the first substantial hemophilia center in Ogikubo Hospital, and Dr. Kaneo Yamada, present Visiting Professor in the Faculty of Medicine, St. Marianna University. We would like to thank every one who has supported the activities of the Center. Finally, we strongly hope that this total care system will become popular among those responsible for caring of patients with other chronic refractory diseases.
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