Facing mortality: A qualitative in-depth interview study on illness perception, lay theories and coping strategies of adult patients with acute leukemia 1 week after diagnosis
Introduction
Immediate diagnosis, prompt initiation of systemic therapy and direct access to supportive measures are prerequisites for a successful outcome in patients with acute leukemia. From a patient point of view, the severity of the disease and the urgency of the initial situation represent a trauma-like experience, while the invisible character of the disease is a challenge to his or her trust. It is therefore a delicate task to reach an optimal level of cooperation between the patient and the physician, which requires adequate insight on both parts.
While quality-of-life issues of patients with acute leukemia have been assessed [1], [2], [3], [4], some of which have been reported in this journal, little is known about illness perception, patient's understanding of his/her disease, and individual coping strategies. Given the differences in personality, socio-cultural background and age, a uniform pattern of patient's readiness to seek and ability to understand medical information (health literacy) cannot be expected and does not exist in clinical reality [5], [6]. Although promoted by clinicians, relatives and society, detailed medical information usually given during the initial phase of the disease may not meet the patient's immediate need and surpass his momentary ability of comprehension.
It was postulated earlier that qualitative research methods should help to improve the understanding of our patients [7], [8]. In contrast to questionnaire measurements, diagnostic narrative interviews allow to portray the complex structure of lay concepts more adequately in their entirety including their multifaceted nature, dynamic aspects and emotion dependence. Moreover, qualitative research leads to the recognition of phenomena that, up to this point, were neither considered nor expected [9], [10]. Therefore, we conducted and analyzed interviews with patients suffering from acute leukemia using the qualitative paradigm. Due to the large amount of information provided by each interview and the in-depth character of the analysis, it was not intended to study a large number of patients, but rather a limited sample, thus permitting to concentrate on the individual's reactions to the vital threat imposed by the disease.
Section snippets
Patients and methods
To investigate the objectives of the study, semi-structured interviews were carried out with 12 consecutive adult patients hospitalized for acute leukemia within the first week of diagnosis. Topics included the patients’ interpretation of prediagnostic symptoms, perception of diagnosis and treatment, comprehension and controllability of the situation. After approval of the study protocol by the ethics committee of our faculty, written informed consent was obtained from all patients. Only
Prediagnostic complaints
In the narratives of the initial complaint, the patients could be separated into one group who strongly perceived the complaints, e.g., extreme weakness, tiredness and bone pain. These seven patients described major restrictions in their everyday life including the inability to carry out their jobs: “I would be at work for two or three hours and then I went home. I was completely exhausted” (003-L). In the other group, all patients described only minor complaints, e.g., feelings of dizziness
Discussion
The aim of our study was to describe phenomenologically, and to generate inductively insight into the existential crisis, in which patients with acute leukemia find themselves shortly after initial diagnosis. In a qualitative analysis of interviews with a sample of patients suffering from acute and chronic leukemia, Berterö et al. [4] found uncertainty to be the core category. These authors focused on quality of life and interpreted uncertainty as an important factor to explain differences in
Acknowledgement
This study was supported in part by the German José Carreras Leukemia Foundation (Grant Number DJCLS-R03/22p).
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