Five acute leukaemia or high malignant lymphoma patients at a hospital in southern Sweden were interviewed about their daily living problems, their coping strategies and their opinions about the nursing care they received during the active phase of their treatment. In addition the EORTC QLQ-C30, the Global Life Quality and the Sense of Coherence scales were administered. The data were analysed from a hermeneutic phenomenological perspective and interpreted to indicate that the patients sensed a threat to their lives, loss of control and having to live in uncertainty stemming from the disease and the treatment. They had problems with such things as fatigue, diarrhoea, nausea and vomiting, loss of appetite, sore mouth, and high temperature. However they seemed to minimise the importance of these problems and instead focused on gaining control of the situation, developing their knowledge of the disease and relying on the  support of their family. Contradictions appeared in their statements about the quality of care; the information given was said to be good but difficult to understand, though the quality of the nursing care was judged to be high it had to be asked for i.e. help was received on request. In conclusion the entire situation of the patients perspective of both from the family and the nurses, needs to be studied in further research in order to fully understand the patients´ coping strategies and how nursing care can support them.

Oral complications are common in patients with haematological malignancies who undergo chemotherapy treatment. A pilot study including 16 haematological patients was carried out to evaluate the oral status using an Oral Assessment Guide (OAG) and to test the reliability of the OAG. The oral assessments were made daily by registered nurses at a Department of Internal Medicine in Sweden. Once a week a dental hygienist made the oral assessments independent of the registered nurses in order to provide data for calculations of inter-rater reliability. All patients had varying degrees of alterations in the oral cavity, especially in the mucous membranes, teeth/dentures and gums. The inter-rater agreement between the nurses and the dental hygienist was good for saliva and swallow, and moderate for voice and gums. Assessments to detect alterations in the oral cavity afford the opportunity for early and individualized interventions and may decrease the risk of oral infections. It is necessary to train the nurses to ensure high levels of reliability in the oral assessments. The OAG seems to be a reliable and clinical useful tool for assessing the oral cavity status and determining changes.

Fifty-four former patients, in remission after acute leukaemia or highly malignant lymphoma, responded to a questionnaire covering physical problems, view of help received, who was most helpful during the treatment phase, and the impact of the disease and treatment on their current life. Energy loss and nutritional problems were most troublesome during the treatment phase, signifying many other physical problems. Patients with acute leukaemia had more problems, and thought the care was worse than did patients with highly malignant lymphoma. Serious physical problems correlated with low satisfaction with practical help received, indicating that the nurses failed to meet the needs of those suffering the most. Reduced psychological and sexual energy persisted in remission, showed no correlation with the extent of physical  problems during the treatment phase, but correlated with current existential problems and sensitivity to infections, with a great need for intimate help and counselling and with a low Sense of Coherence. Family relationships were said to have improved, while work and finances were negatively affected. The results indicate that nursing care should actively focus physical problems, especially the energy loss and nutritional problems. The overwhelming fatigue hinders the patient to take care of physical aspects for her/him self, and may be overlooked by nurses since their motor capability seem intact. The long term effect of the illness means reduced psychological and sexual energy and high degree of existential problems and sensitivity to infections, which indicates the importance of follow-up care and perhaps especially for counselling for the long-term reactions with disturbed equilibrium. 

The purpose of this study was to investigate quality of life and sense of coherence for acute leukaemia and malignant lymphoma patients at the start of treatment and throughout two years. A further purpose  was to compare questionnaire responses with patients’ statements in open-ended interviews. A consecutive sample of 16 patients responded to the Quality of Life Questionnaire (QLQ C-30), Lund Gerontological Centre questionnaire and the Sense of Coherence Scale at the start of treatment and after 12 and 24 months. The QLQ C-30 questionnaire was administered after 4, 8, 16 and 20 months. Tape-recorded open-ended interviews were conducted every four months before the patients responded to the questionnaires. Quality of life and sense of coherence were higher scored at the start of treatment for patients without relapse, than for those with relapse. The recovery pattern, however, throughout the two years was similar for both relapsers and non-relapsers, thus the former had not recovered to the same extent as the latter. Relapsers may have had different prerequisites or a worse position at the debut of the disease and reasonably they need more compensatory nursing care. The long lasting nature of the disease makes it important not to withdraw the nursing care too soon after remission, and to develop strategies to empower the patients in handling the consequences of the disease and treatment.  

Individuals (n=18) in remission from acute leukemia or highly malignant lymphoma were asked to narrate their lived experience of falling ill, of being under treatment and life following this event. The transcribed texts were analyzed from a phenomenological-hermeneutic perspective, expanded by their medical and social history as related in interviews. The analysis revealed three themes: (1) Believed in life, fought for it and came through stronger, (2) Life went on, adapted and found a balance in the new life, (3) Life was over, felt out of control and lost belief in life. Participants in the first two groups viewed their quality of life as improved and stated that the struggle had been meaningful and that the experience had made them grow, as a person, related to the experience of gaining new insight or strength. The third group of survivors viewed their quality of life as decreased. They found no meaning in their experience and evaluated the situation with bitterness. To help people retell their experiences may be one way of processing the experience of the disease and treatment and to regain a balance in life.             

Nine spouses of people who had suffered from acute leukaemia or highly malignant lymphoma were interviewed about their experiences of everyday life throughout their partner’s illness and treatment, and their view of the professional care provided. The transcribed texts were subjected to phenomenological-hermeneutic analysis. The spouses felt they were in a situation of overall severe crisis i.e. experiencing feelings of distress, restrictions and limited or lack of support. The analysis revealed three family types: the couple acting as a unit, the couple acting independently on equal terms, and the couple acting separately with the spouse in a subordinate position. The spouses´ evaluation of the entire experience varied according to the family type and the spouses´ personal resources, which influenced the availability and utilization of their social network and the support of health care staff. Contentment was related to the couple acting as a unit or the couple acting independently on equal terms and taking control over the situation, actively asking for support and requiring the staff to meet their needs. Discontentment was related to subordination of the spouse to the partner or to health care staff, and failure to obtain support within the couple or from others. Empowering the spouses may mean helping them develop their skills, providing opportunities and authority and gaining access to resources based on knowledge of the family type, the consent of the partner and the spouses´ freedom to make choices. This may well lead to increased efficiency and have positive effects for the patients, the spouses and for them both as a couple.