Feng Ming-Chu, Kao Shu-Ching, Lu Po-Liang, Ko Nai-Ying
Department of Nursing, Kaohsiung Medical University Chung-Ho Memorial Hospital.
Hu Li Za Zhi. 2008 Feb;55(1):24-32.
Antiretroviral treatment dramatically reduces mortality and prolongs the life expectancy of HIV/AIDS patients in Taiwan. The stigma attached to AIDS, and conflicts within the family result in family stress and emotional distress. Consequently, parents of adult children with HIV/AIDS endure perpetual distress while caring for their adult children. The purpose of this study is to elucidate the experiences of seven parents caring for children over 18 years of age with HIV/AIDS. Hermeneutic phenomenological methodology was applied to reveal the trajectory of parents' caring experiences and to discover the hidden meanings of the phenomena. Data were collected using semi-structured in-depth interviews lasting from 1.5 to three hours. Interviews were tape-recorded and transcribed verbatim. Data were analyzed using thematic analysis with the concept of the hermeneutic circle. Four essential themes emerged, and were identified and clarified. The parents' caring experiences were: (1) We didn't expect our children's controversial illness, so we pretend to ignore the taboo; (2) We are suffering from shame, and our daily lives and interaction with others have changed; (3) We provide advice frequently to protect our children from pain, and try our best to take care of them in order to bring them better fortune; and (4) We feel helpless in the face of predestined causality, and wish we could bear the burden of sin for our children. Unconditional love and endless responsibility, furthermore, were the essential experiences of these parents. Our findings highlight the importance of patient-center nursing care for HIV/AIDS patients and for healthcare professionals to assist HIV affected families on related family stress throughout the illness trajectory.
抗逆转录病毒治疗显著降低了台湾地区艾滋病毒/艾滋病患者的死亡率并延长了他们的预期寿命。与艾滋病相关的污名以及家庭内部的冲突导致了家庭压力和情绪困扰。因此,成年艾滋病毒/艾滋病患者的父母在照顾子女时承受着持续的痛苦。本研究的目的是阐明七位照顾18岁以上艾滋病毒/艾滋病子女的父母的经历。采用诠释现象学方法来揭示父母照顾经历的轨迹,并发现这些现象背后隐藏的意义。通过持续1.5至3小时的半结构化深度访谈收集数据。访谈进行录音并逐字转录。使用带有诠释循环概念的主题分析法对数据进行分析。出现了四个基本主题,并进行了识别和阐明。父母的照顾经历包括:(1)我们没想到孩子会患上这种备受争议的疾病,所以我们假装忽略这个禁忌;(2)我们感到羞耻,日常生活以及与他人的互动都发生了变化;(3)我们经常提供建议以保护孩子免受痛苦,并尽力照顾他们,希望给他们带来更好的运气;(4)面对既定的因果关系,我们感到无助,希望能为孩子承担罪责。此外,无条件的爱和无尽的责任是这些父母的基本经历。我们的研究结果凸显了以患者为中心的护理对艾滋病毒/艾滋病患者的重要性,以及医疗保健专业人员在疾病全过程中协助受艾滋病毒影响的家庭应对相关家庭压力方面的重要性。