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Leukemia and bone marrow transplantation : personal meanings and perceptions of the illness experience Richards, Debra C.

Abstract

A non-probability, purposive sample was selected from the bone marrow transplant (BMT) directory of a North American transplant center to describe the personal meanings and perceptions of the illness experience of individuals who had been diagnosed with leukemia, and undergone BMT, and to explore and describe how the individuals' explanatory model of health and illness differs from the professional biomedical model of health care. A phenomenological approach guided the data collection process. Personal interviews with the four participants were conducted with the interview format and questions being based on Kleinman, Eisenberg and Good's (1978) model for eliciting a person’s explanatory model of health and illness. The data, comprised of verbatim transcripts of the audio-recorded interviews, and field notes of the researcher, were analyzed by employing the steps of phenomenological analysis as outlined by Patton (1991), and Giorgi (1985), which resulted in the identification of recurrent themes. Findings revealed that individuals perceive their illness in ways that differ from professionals. The participants perceived leukemia as a chronic illness rather than an acute disease. BMT, perceived as a life-saving - death-postponing treatment, possessed characteristics which led to personal and moral dilemmas. Participants viewed the cause of disease to be external to themselves, and beyond their control. The chronic implications of the illness were controlled for, and coped with by adopting altered definitions of normalcy and going through a process of re-learning. The study found that living with a life-threatening illness, although "successfully treated," took the meaning of uncertainty. Being faced with, and learning to live with a life-threatening illness was perceived as an opportunity for enrichment of life. The findings indicate the biomedical approach to healthcare is narrow in focus, and fails to consider the personal meanings and perceptions the illness experience hold for individuals who have been diagnosed with leukemia, and treated with BMT. For effective health care to be provided, and to reduce the differences and discrepancies between individuals and health care professionals, health care professionals must consider and incorporate the individual's explanatory model of health and illness into the health care plan.

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