published_or_final_version / Social Work / Master / Master of Social Work

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.

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. / Education, Faculty of / Educational and Counselling Psychology, and Special Education (ECPS), Department of / Graduate

This study looked into paients’ experiences of end stage renal disease (ESRD) and renal replacement therapy (RRT). A qualitative me thodology was employed involving fifteen patients between the ages of 20 – 60 years that were interviewed on their experiences using the semi structured approach to interviewing. The knowledge gained was analysed thematically. The study was explored within two theoretical frameworks, namely the biopsychosocial and the ecological models. Results of the study revealed that ESRD and RRT posed many psychosocial challenges at a micro and macro level, as patients attempted to reconcil e these experiences with their lifestyles and lives. Challenges were expressed in the areas of functional capacity, work and sexuality. Family life was seriously affected when patients had to make themselves available for life long tr eatment that depended on machines. Recommendations included mobilisatio n of positive support networks, religion/spirituality, and pr ofessional support playing an interrelational role in enabling patients to cope through the long term process so that they may emerge from it with a modicum of quality in their life. Thus a team approach was key to optimal living for the patient. From an ecological perspective, macrosystemic change was also considered important for government to introduce policies that ensure economically productive living for persons with kidney dysfunction. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2008.