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Renal failure : a sociocultural investigation of an illness

University of British Columbia

People living with renal failure experience enormous challenges, yet very little is known about life with this disease. The goal of this research was to gain an integrated understanding of the lives of people with renal failure. An understanding of life with renal failure that includes cultural, institutional and historical contexts may provide health care practitioners with the kind of information and insights necessary to improve medical practice. Thus far, medical practice has been based on a biomedical model of care that focuses almost exclusively on the physical aspects of illness. From this perspective, people with kidney disease are seen as autonomous and rational individuals. In this research, a sociocultural multiple case study approach was utilized in order to gain a situated understanding of life for four people with renal disease. This research revealed that life with renal failure is work. While it is the people living with renal failure who do the bulk of the work, friends and family also work to "live" with renal disease. Participants and their significant others learn about and become experts on life with this disease. A gap was found between practitioners' understanding of disease and participants' lived experience — resulting in many negative repercussions. Medical-based knowledge is lacking because it does not consider the three relevant sources of knowledge: practitioners, participants and participants' significant others. This research argues for a bridge between the home world and the hospital world, so that a broader community of practice is created. An account of the lived experience of people with renal failure that includes these factors can inform "best practice" because it provides a richer and more authentic picture of life with this illness. It is from this perspective that health care practitioners can begin to broaden their understanding of renal failure as it is "lived", and, so informed, can better provide the kinds of education and support that will enhance the lives of people with this illness.

Thesis/Dissertation

application/pdf

2009-07-02

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http://hdl.handle.net/2429/9967

Educational and Counselling Psychology and Special Education

University of British Columbia

UBCV

DSpace