Thomas Felicity
Department of Geography, University of Sheffield, Winter Street, Sheffield S10 2TN, UK.
Soc Sci Med. 2006 Dec;63(12):3174-87. doi: 10.1016/j.socscimed.2006.08.016. Epub 2006 Sep 20.
It is generally assumed that caring is a substantial burden upon households afflicted by HIV/AIDS. However, as a 'private' household responsibility, little is known about the experiences of either those who provide the care, or those receiving care, despite the fact that the process may extend over several years and may have a greater impact upon the livelihood security and well-being of the household than the actual death of the ill person. Drawing upon data collected through solicited diaries, this paper explores how illness and the daily and long-term duties of caring amongst a sample of households in the Caprivi Region of Namibia impacts upon the physical and psychological well-being of ill people and their carers. While optimism and enhanced well-being were recorded during periods of illness remission, AIDS-related illnesses invariably result in periods of sickness and dependency. This results in disempowerment and lowered self-esteem, and decreased well-being amongst ill people. This paper argues that the increasing dependency of the ill person, widespread pressure to maintain household integrity through 'seeing for yourself', i.e. being self-sufficient, or at least contributing to reciprocal support networks, and the stigma attached to HIV/AIDS can result in considerable intra-household tension and breakdown of key social support networks.
人们普遍认为，照护给受艾滋病毒/艾滋病折磨的家庭带来了沉重负担。然而，作为一项“私人”家庭责任，尽管照护过程可能持续数年，且对比病人的实际死亡，其对家庭生计安全和福祉的影响可能更大，但对于提供照护者和接受照护者的经历却知之甚少。本文利用通过征集日记收集的数据，探讨了纳米比亚卡普里维地区一些家庭中疾病以及日常和长期照护职责如何影响病人及其照护者的身心健康。虽然在疾病缓解期记录到了乐观情绪和幸福感增强的情况，但与艾滋病相关的疾病总是会导致患病和依赖期。这导致病人丧失能力、自尊降低以及幸福感下降。本文认为，病人日益增加的依赖性、通过“自力更生”（即自给自足，或至少为互助支持网络做出贡献）来维持家庭完整的广泛压力，以及与艾滋病毒/艾滋病相关的污名，可能导致家庭内部出现相当大的紧张关系，并使关键的社会支持网络破裂。
