Leukaemia is one form of cancer disease, comprising both an acute or chronic form, and has a wide range of altemative therapy aids, as well as a highly unpredictable prognosis. This thesis is a study of 27 patients with acute and chronic leukaemia.
The general aim of the present thesis was to acquire knowledge about quality of life (QOL) from the perspective of the adult individual with leukaemia. It was also to enquire how the health care system and the nursing staff can improve this individual's experienced quality of life. Data have been collected through qualitative interviews (articles I, II and III), observations, follow-up interviews and reflective conversations(articles IV and V). The data have been analysed using constant comparative analysis (articles I, II, IV and V) and narrative qualitative text analysis (article III).
Quality of life was found to be experienced as 'a positive attitude to life' by those adults with acute leukaemia, and autonomy and interpersonal relationships were of great importance in experiencing this. Those with chronic leukaemia experienced quality of life as 'life satisfaction'. Even here interpersonal relationships played a major role, as did self-esteem, performance ability and social ability. When explaining the differentprofiles in quality of life experienced by those adults with acute and chronic leukaemia, uncertainty was the phenomenon found. Adults with acute leukaemia experienced uncertainty concerning the prognosis, recurrence, aggravations and set-backs. Those with chronic leukaemia were uncertain about adjusting their lives, changing life-styles as well as being in doubt. Both groups described this uncertainty as not feeling secure, not being in control and being undecided.
Transition, i.e. the individual passing from one phase to another, was the core category found when studying the interaction between adults with leukaemia and their nursing staff. This transition could be described in three stages. First, being a person and trying to maintain a social status. Second, becoming a patient, accepting the disease and feeling insecure in this totally new situation. Finally, the patient becomes a leukaemia patient, isolating her/himself and becoming aware of the disease and its side-effects.
In the study about the care supplied by the nursing staff and demanded by the leukaemia patients, the findings produced two core categories; routines and interaction. The care supplied was identified as routines, which could be seen as regular courses of procedures and a way of bringing order into daily life. Routines could also be a distancing manoeuvres to manage stress when working with seriously ill people. The care demanded by these leukaemia patients was human interaction. The leukaemia patient wants to be treated as a human being, with mutual respect, concern etc. The patients want to participate and interact while still maintaining their self-respect and individual integrity.
This thesis points out that the QOL of those adults with leukaemia could be improved by the health care system and the nursing staff through caring for them as fellow beings, with respect and giving them autonomy and self-control. If the nurses and nursing staff are to be able to care for leukaemia/cancer patients, they have to care for themselves. If they become more aware of their own feelings and reactionS, they will also become more attentive to the patients' experiences and needs.
Linköping: Linköpings universitet , 1996. , 68 p.
Papers, included in the Ph.D. thesis, are not registered and included in the posts from 1999 and backwards.