Livskvalitets- och hälsoaspekter i onkologisk omvårdnad : patientperspektiv och familjeperspektiv

Abstract

The overall aim of the thesis was to study quality of life and health aspects in oncology nursing, from patient and family perspectives. Oncology nursing is grounded in a holistic approach and cancer can from that perspective be viewed as a “family illness”. Patients with lung cancer, the diagnosis that was most frequent in the samples that were studied, are often diagnosed with advanced disease and have a short expected survival time. Quality of life (QOL) has been suggested as a primary end point for these patients care. Significant others health has shown to be negatively affected by family caregiving and when facing the death of a family member. Health has also been described as a generic outcome from family caregiving.

The aim of paper I was to explore relations between health-related quality of life (HRQOL) dimensions and overall QOL in lung cancer patients, in assessments by patients and significant others respectively. Among the functional scales, only emotional functioning predicted overall QOL in the patients’ assessments. In the significant others’ assessments, both emotional functioning and physical functioning predicted overall QOL. Among the symptom scales, fatigue was the only predictor of overall QOL and the result was the same among both patients and significant others. The functional scales together explained 27 % of the variance in overall QOL in the patients group, and 46 % in the significant others group. The symptoms together explained 22 % of the variance in both the patients and the significant others.

The objectives in paper II and III were to study HRQOL in significant others of patients with lung cancer, in the disease trajectory and after the patient’s death, further to explore mental ill health in significant others before the patients death. In comparisons with a general population sample the significant others’ scores, one month after diagnosis, reflected worse functioning in the mental domains. These results were the same six months after the patient’s death when the results also reflected worse HRQOL in the physical and social domains. Longitudinal, three different patterns of change were identified in four items/scales. A decrease-increase pattern, demonstrating a deterioration from a time-point after the patient’s diagnosis to a time-point before the patient’s death, and an improvement six months after the patient’s death, was identified for the scales ‘self-rated health’, and ‘positive affect’. For ‘family functioning’ the pattern of change was identified as constant decrease, and for ‘satisfaction with family functioning’ as decrease-stable. Regarding mental health, approximately 40 % of the significant others’ reported symptoms of strain for each of the three scales ‘depression’, ‘exhaustion’, and ‘emotional well-being’. These symptoms of strain seemed to coexist, since the significant others clustered as subgroups, ranging from “high on all scales” to “low on all scales”.

Paper IV describes the cross-cultural adaptation process underlying a Swedish version of the revised Piper Fatigue Scale for measuring cancer-related fatigue. From the results in the thesis it was concluded that interventions implemented early in the patients’ disease trajectory, and with the aim to improve patients and significant others QOL and health should be parts of oncology nursing. Family nursing could be such an intervention where patients with lung cancer and their significant others are supported in identifying their own strengths and resources and also needs that require external resources.