Psychosocial problems of bereaved families of HIV-infected hemophiliacs in Japan

Abstract

This study sought to investigate the psychosocial difficulties faced by bereaved families of HIV-infected hemophiliacs in Japan, with the goal of clarifying appropriate ways to offer them support. Interviews were conducted with 46 family members from 36 families, and a written survey was mailed to 392 families. Valid responses from 225 families (307 family members) were analyzed (response rate 57.4%). We found that even at a mean 7–9 years after their family member's death, the bereaved continued to express deep feelings of sorrow and grief, and further, expressed strong feelings of resentment, anger, guilt and regret, anxiety over discrimination, and loneliness. Notably, 95% of the mothers endorsed feeling “sorry for giving birth to a hemophiliac child”. Additionally, even after their family member's death, approximately 70% of the respondents continued to restrict their daily activities due to stigmatization or anxiety over discrimination. Finally, 59% of the respondents were found to have posttraumatic stress disorder-like symptoms according to the Impact of Event Scale-Revised, and 46% were found, according to General Health Questionnaire-12 (a measure of mental disorder) criteria, to suffer mental health problems. These results indicate that bereaved families of HIV-infected hemophiliacs in Japan have special characteristics and psychosocial needs, and still suffer significant psychosocial difficulties years after the bereavement.