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

This thesis aimed at from the patients’ and the spouses’ perspective, investigate impact on daily living of acute leukaemia (AL) or highly malignant lymphoma (HML) when under, and free of treatment and their view of the nursing care received. Open-ended interviews, generic life quality (LGC), and cancer specific life quality (EORTC QLQ-C30) questionnaires, Sense of Coherence Scale (SOC), a study-specific questionnaire and an oral assessment guide (OAG) was used. In all 88 respondents with AL or HML and nine spouses participated in the studies. Results showed respondents to be placed in a state of traumatic crisis. Basic aspects were types of diagnosis, level of SOC and LGC and age, which influenced the way things developed. Severe fatigue, nutritional problems, oral complications and proneness to infections reduced their capacity to handle daily living. Psychosocial and existential strain together with economic strain and having to live in isolation became further limitations. Tangible and emotional support was obtained from the family. Care was evaluated as good but said to “be on request”. Different family types “Couple acting as a unit”, “Couple acting independently and on equal terms” and “Couple acting separately with the spouses subordinate” meant different possibilities for the spouses to be involved, support their sick partner and obtain support for themselves. The long-term consequences could constitute a danger to patients’ continued living, or an adaptation in which a balance was obtained or could mean a “new lease of life”.  The outcome of the entire situation seems to depend on the basic aspects, the patient’s life goals when the disease was contracted the family situation and ability to obtain social support from family, friends and nurses.