DeMatteo D, Wells L M, Salter Goldie R, King S M
Department of Paediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.
AIDS Care. 2002 Apr;14(2):261-78. doi: 10.1080/09540120120076940.
This paper reports on the findings from a multi-site psychosocial study of Canadian families with HIV-positive mothers. A total of 110 adults, representing 91 families across Canada participated in interviews. Qualitative analysis revealed a number of themes including: a complex web of personal, health and family concerns; the needs of children; family finances; disclosure dilemmas; and social experiences and challenges. These themes reflect an intricate and dynamic picture of parental and family life for adults and children living with HIV infection. Nowhere in the literature do we see HIV framed as a 'family infection'. Surveillance reporting reflects information on infected adults and children but not family groupings. Yet with HIV several family members and multiple generations as well as single or both parents may be infected, highlighting the importance of 'family HIV' as a framework for health policy and programme development. At issue is the problem that medical and other institutions view issues of surveillance, treatment and care through the lens of the infected individual, rather than being family focused. Often it is only in the context of identifying support, or barriers to support, for the medically diagnosed individual that biological or socially created families become a focus of concern. The failure to situate both chronic and life-threatening illnesses within the family setting has serious quality of life and planning consequences for parents and children living with HIV infection as well as other illnesses.
本文报告了一项针对加拿大有艾滋病毒呈阳性母亲的家庭进行的多地点社会心理研究的结果。共有110名成年人，代表加拿大各地的91个家庭参与了访谈。定性分析揭示了一些主题，包括：个人、健康和家庭问题的复杂网络；儿童的需求；家庭财务；披露困境；以及社会经历和挑战。这些主题反映了感染艾滋病毒的成年人和儿童的父母及家庭生活的复杂而动态的图景。在文献中，我们 nowhere 看到将艾滋病毒视为“家庭感染”。监测报告反映了关于受感染成年人和儿童的信息，但没有反映家庭分组情况。然而，艾滋病毒可能会感染多名家庭成员、多代人以及单亲或双亲，这凸显了“家庭艾滋病毒”作为卫生政策和项目制定框架的重要性。问题在于，医疗和其他机构通过受感染个体的视角看待监测、治疗和护理问题，而不是以家庭为重点。通常只有在为医学诊断的个体确定支持或支持障碍的背景下，生物学或社会形成的家庭才会成为关注焦点。未能将慢性病和危及生命的疾病置于家庭环境中，对感染艾滋病毒以及其他疾病的父母和儿童的生活质量和规划产生了严重影响。
