Faber S
Simon Fraser University, Faculty of Education, Burnaby, British Columbia.
CANNT J. 2000 Jul-Sep;10(3):24-34.
The goal of this research was to gain an integrated understanding of the lives of people with end stage renal disease (ESRD) requiring hemodialysis (HD)--one that included cultural, institutional and historical contexts. In this research a sociocultural analysis of four cases of everyday life with ESRD offered a situated understanding of life with this disease. This study revealed that life with ESRD is work. Moreover, while people living with ESRD do the bulk of that work, family also work to "live" with ESRD. Biomedically-based knowledge can be enriched by incorporating two relevant sources of knowledge: participants and participants' significant others. The addition of these sources of knowledge broadens health care practitioners' understanding of ESRD as it is "lived," and, so informed, practitioners can better provide the kinds of education and support that will enhance the lives of people with this illness.
本研究的目标是全面了解需要进行血液透析(HD)的终末期肾病(ESRD)患者的生活,这种了解包括文化、制度和历史背景。在本研究中,对4例ESRD患者日常生活的社会文化分析提供了对这种疾病患者生活的情境化理解。该研究表明,ESRD患者的生活充满艰辛。此外,虽然ESRD患者承担了大部分此类艰辛,但家人也在努力与ESRD患者“共同生活”。通过纳入两个相关的知识来源:参与者及其重要他人,可以丰富基于生物医学的知识。这些知识来源的增加拓宽了医疗保健从业者对ESRD患者“实际生活”情况的理解,并且在这种认知的指导下,从业者能够更好地提供各种教育和支持,从而改善这类患者的生活。