Daily life problems from a nursing perspective in patients with acute leukaemia or highly malignant lymphoma

Abstract: The aims of this thesis were, to investigate the impact on daily living of acute leukaemia or highly malignant lymphoma when under treatment, viewed retrospectively and from a longitudinal perspective, from the point of view of the patients and their spouses, and to ascertain their view of the nursing care provided. A combination of qualitative and quantitative methods was use i.e. open-ended interviews, generic life quality (LGC), and cancer-specific life quality (EORTC-C30) questionnaires, Sense of Coherence Scale (SOC), a study-specific questionnaire and an oral assessment guide. A total of 88 respondents diagnosed as having acute leukaemia or highly malignant lymphoma participated in the studies, of whom 39, together with nine spouses, participated in interviews. The results showed that the respondents were placed in a state of traumatic crisis by the overwhelming threat to their lives, physically, psychosocially and existentially. The findings indicated that the type of diagnosis, level of SOC and LGC, and age influenced the way the situation developed. Severe fatigue, nutritional problems, oral complications and proneness to infections reduced the capacity to handle daily living. Psychosocial and existential strain together with economic strain and having to live in isolation constituted further limitations. Tangible and emotional support was obtained from the family, and was manifestly very important. Nursing care was evaluated as good and at the same time said to be "on request". The information was evaluated as good, but not always comprehensible and sometimes ambiguous in relation to the care routine applied. Three different family types were identified "Couple acting as a unit", "Couple acting independently and on equal terms" and "Couple acting separately with the spouses subordinate" each implying different possibilities for the spouses to be involved, support their sick partner and obtain support for themselves. The spouses who had the power to take control, get help and achieve the role they wanted were contented with their situation. The spouses who did not have the strength to demand what they wanted failed to obtain support and felt distressed. Recovery took at least two years and even longer for those who had had relapses. Three types of long-term consequences were identified. For one third of the patients the entire situation constituted a danger to their continued life and they functioned at a lower level. One third adapted to the situation and achieved a balance in existence, and for one third it constituted a possibility, being given "a new lease of life", and functioning at a higher level. It seems important to integrate principles of crisis interventions into the nursing care, including tangible, informational and emotional support. It also seems important from a nursing-care perspective to carefully monitor and intervene in the patients' physical problems and to outline strategies for dealing with them. The findings also indicated that the support needs to be given on a long-term basis focusing on both the disease and its consequences for everyday life.