摘要
Objective China began providing antiretroviral therapy to people living with HIV/AIDS （PLWHA） in 2003. This study was to investigate the living conditions, including quality of life and happiness, and need for palliative care of end-of-life PLWHA in rural Henan. Methods One hundred end-of-life AIDS patients were selected from Weishi, Zhenping and Tanghe counties in Henan, using convenience sampling. The World Health Organization Quality of Life for HIV （WHOQOL-HIV） BREF Chinese Version was used to measure the quality of life and the Memorial University of Newfoundland Scale of Happiness （MUNSH） was employed to measure subjective welfare. Qualitative interviews and focus group discussions were undertaken to learn about the palliative care provided and the specific needs of the end-of-life patients. Results Patients’ overall quality of life was moderate （12.62±1.97）. Highest scores were in the spirituality/religion/personal beliefs, higher than the average scores in the Chinese population （P0.01）, while psychological （13.58±2.06） and environment （12.50±3.28） domain scores were similar to the latter （P0.05）. Both independence （12.15±2.15） and physiological （14.04±3.16） domain scores were lower than the average of the people living with HIV/AIDS in other studies （P0.01）; however, all were in the moderate range. The average MUNSH score was 21.00±6.20, which was also moderate. The in-depth interviews indicated that the Henan Provincial Government’s policy of treatment and care had a beneficial impact on end-of-life AIDS patients, although the care components could be improved. Conclusions Living conditions of the end-of-life AIDS patients were moderate, and the HIV/AIDS palliative care model used was beneficial to them. Care could be improved by assisting the family unit as a whole.
Objective China began providing antiretroviral therapy to people living with HIV/AIDS （PLWHA） in 2003. This study was to investigate the living conditions, including quality of life and happiness, and need for palliative care of end-of-life PLWHA in rural Henan. Methods One hundred end-of-life AIDS patients were selected from Weishi, Zhenping and Tanghe counties in Henan, using convenience sampling. The World Health Organization Quality of Life for HIV （WHOQOL-HIV） BREF Chinese Version was used to measure the quality of life and the Memorial University of Newfoundland Scale of Happiness （MUNSH） was employed to measure subjective welfare. Qualitative interviews and focus group discussions were undertaken to learn about the palliative care provided and the specific needs of the end-of-life patients. Results Patients’ overall quality of life was moderate （12.62±1.97）. Highest scores were in the spirituality/religion/personal beliefs, higher than the average scores in the Chinese population （P0.01）, while psychological （13.58±2.06） and environment （12.50±3.28） domain scores were similar to the latter （P0.05）. Both independence （12.15±2.15） and physiological （14.04±3.16） domain scores were lower than the average of the people living with HIV/AIDS in other studies （P0.01）; however, all were in the moderate range. The average MUNSH score was 21.00±6.20, which was also moderate. The in-depth interviews indicated that the Henan Provincial Government’s policy of treatment and care had a beneficial impact on end-of-life AIDS patients, although the care components could be improved. Conclusions Living conditions of the end-of-life AIDS patients were moderate, and the HIV/AIDS palliative care model used was beneficial to them. Care could be improved by assisting the family unit as a whole.
基金
supported by the China Global Fund Round 3 and the China Multidisciplinary AIDS Prevention Training Program with NIH Research Grant #U2R TW06918-01
funded by the Fogarty International Centre,the National Institute on Drug Abuse and the National Institute of Mental Health (China ICOHRTA, with Principal Investigator being Zun-You WU)
