Vallerand April Hazard, Hough Edythe, Pittiglio Laura, Marvicsin Donna
Wayne State University College of Nursing, Detroit, Michigan 48202, USA.
AIDS Patient Care STDS. 2005 Feb;19(2):100-9. doi: 10.1089/apc.2005.19.100.
The current study explores the impact of HIV disease on mothers as they face the task of balancing their own physical and psychological needs with the needs of their families as well as the additional burden of deciding whether to disclose their HIV status to their children. Qualitative interviews were conducted with 35 women and 19 children 10-18 years of age. Mothers were interviewed about the experience of being an HIV-positive mother and issues regarding disclosure. Children were also interviewed about the experience of having a mother who is HIV-positive and issues regarding disclosure. The decision to disclose was dependent on the child's developmental level, the degree of the mother's illness, and in some cases this decision was taken from mothers when someone else disclosed their HIV status to their children. Positive aspects of disclosure from the mother child dyads included open, honest communication, and closer relationships between mothers and their children. Common negative themes emanating from the data included fear, uncertainty, forced secrecy for fear of being ostracized based on the stigma associated with the disease, behavioral changes in the children, and shifting responsibilities between the mother and the child. Findings of the study suggest that disclosure, and all it entails, remains a vital issue for mothers who are HIV-positive. In addition, the findings reflected that children and their mothers have very different perspectives regarding the process and the effects of disclosure of the mother's HIV status. Clinical implications and recommendations for further research are discussed.
当前的研究探讨了感染艾滋病毒的疾病对母亲的影响,她们面临着平衡自身生理和心理需求与家庭需求的任务,还要承担是否向子女披露自己艾滋病毒感染状况的额外负担。对35名女性和19名10至18岁的儿童进行了定性访谈。访谈了母亲们作为艾滋病毒呈阳性母亲的经历以及与披露相关的问题。还访谈了孩子们有一位艾滋病毒呈阳性母亲的经历以及与披露相关的问题。披露的决定取决于孩子的发育水平、母亲的病情严重程度,在某些情况下,当其他人向孩子披露母亲的艾滋病毒感染状况时,母亲们就失去了对这一决定的掌控权。母婴二元组披露的积极方面包括开放、坦诚的沟通,以及母亲与孩子之间更亲密的关系。数据中出现的常见消极主题包括恐惧、不确定性、因害怕基于与该疾病相关的污名而被排斥而被迫保密、孩子的行为变化,以及母亲与孩子之间责任的转移。研究结果表明,披露及其所带来的一切,对于艾滋病毒呈阳性的母亲来说仍然是一个至关重要的问题。此外,研究结果还反映出,孩子及其母亲对母亲艾滋病毒感染状况披露的过程和影响有着截然不同的看法。文中讨论了临床意义和进一步研究的建议。