Feng Ming-Chu, Feng Jui-Ying, Chen Tun-Chieh, Lu Po-Liang, Ko Nai-Ying, Chen Yen-Hsu
Department of Nursing, Kaohsiung Medical University Hospital, Kaohsiung Medical University, Kaohsiung, Taiwan, ROC.
AIDS Care. 2009 Apr;21(4):482-9. doi: 10.1080/09540120802290373.
The stress, needs and quality of life (QoL) of family members of people living with HIV/AIDS (PLWHA) are critical to explore in Taiwan where home care projects are not available to help the PLWHA families. We examined the extent of stress, needs, QoL and its correlates that family caregivers of PLWHA experienced with structural questionnaires survey. A total of 50 family caregivers of PLWHA visiting a medical center in Taiwan participated in the study from October 2005 to August 2006. Family caregivers felt most stressful on disclosure and stigma issues, and most worried about patients' interpersonal relationships. The most important needs were care-related needs including knowledge of the disease progression, methods of examination and treatment, and the related side effects. The level of stress significantly positively correlated with needs, and negatively correlated with QoL. Availability of alternative manpower to care PLWHA and being PLWHA's parents were two significant factors affecting family caregivers' QoL. In conclusion, family members of PLWHA experienced high level of stress, enormous caring needs, and poor QoL. A family-centered care for PLWHA and their families in the community is crucial to improve quality of care and to prevent family's overload, particularly for families with no alternative manpower and for those being PLWHA's parents.
在台湾,由于缺乏居家照护项目来帮助感染艾滋病毒/艾滋病患者(PLWHA)的家庭,因此探索这些患者家庭成员的压力、需求和生活质量(QoL)至关重要。我们通过结构化问卷调查,研究了PLWHA家庭照顾者所经历的压力程度、需求、生活质量及其相关因素。2005年10月至2006年8月,共有50名前往台湾一家医疗中心就诊的PLWHA家庭照顾者参与了这项研究。家庭照顾者在信息披露和污名问题上感到压力最大,最担心患者的人际关系。最重要的需求是与护理相关的需求,包括疾病进展知识、检查和治疗方法以及相关副作用。压力水平与需求显著正相关,与生活质量负相关。有替代人力照顾PLWHA以及作为PLWHA的父母是影响家庭照顾者生活质量的两个重要因素。总之,PLWHA的家庭成员经历了高度压力、巨大的照顾需求和较差的生活质量。在社区中为PLWHA及其家庭提供以家庭为中心的护理对于提高护理质量和防止家庭负担过重至关重要,特别是对于那些没有替代人力的家庭以及作为PLWHA父母的家庭。