Living with haemophilia and HTV/AIDS: support and coping

Abstract

This paper describes sources and types of support, appraisal of support, and use of social support as a strategy for coping with Acquired Immune Deficiency Syndrome (AIDS)-related stresses. Thirty people with haemophilia, 23 family caregivers and 17 bereaved relatives participated. The study was conducted in two stages: individual interviews and mailed questionnaires. The key coping strategies used were 'normalizing personal relationships' and 'seeking informational support'. Informational support was provided by health professionals and practical aid by relatives. Respondents reported insensitivity, prejudice and avoidance from others. Participants needed peers for emotional and affirmational support, and professionals for informational support. The preferred intervention was support groups, co-led by professionals and peers.