ELDERLY PERSONS LIVING WITH CANCER. Quality of life and lived experience

Sammanfattning: Over the coming decades, the numbers of elderly will increase, and through improved lifestyles and better treatment longevity has increased, and with it, the risk of contracting cancer. How elderly people live with cancer has until now attracted limited research. The overall aim of this thesis was to investigate the QoL of elderly persons from the time of a cancer diagnosis through the following six months. The aim was further to investigate changes in QoL over time in relation to type of cancer, age, socio-economic conditions, ability to perform Activities of Daily Living (ADL), contact with the health-care system, social network and support, and hope. Moreover, the aim was to illuminate the lived experience of getting cancer in old age. The study had both a quantitative and a qualitative part. The quantitative part was a follow-up study of 101 individuals (65+) recently diagnosed with cancer (74 women, 27 men), but was reduced to 75 (57 women, 18 men) by the six-month investigation point. QoL of newly diagnosed persons with cancer aged 65 years were investigated at baseline, and three and six months after using: EORTC QLQ-C30, Katz ADL-Index, Nowotny's Hope Scale and the Interview Schedule for Social Interaction (ISSI). The follow-up study was based on an interview schedule performed as three structured interviews. In the qualitative study, a descriptive phenomenological method was used to investigate ?the lived experience of getting cancer in old age?. In total, 16 persons, all recruited from the follow-up study, (aged 65+, mean age 76 (range 68-83)) with cancer were interviewed based on open-ended interview.

Factors associated with low QoL at baseline were ?no other incomes than retirement pension?, ?low level of hope?, and ?lung cancer?. In addition, ?needing more help in activities of daily living?, ?getting help from grown-up children? and ?needing help with PADL (Personal Activities in Daily Living)? were associated with low QoL. No significant changes were found in QoL from baseline to three months, while perceived social network deteriorated significantly. Dependency, reduced financial circumstances, and low level of hope were significantly associated with low QoL at the three-month follow-up. Fatigue was the most reported symptom at baseline and at three and six months. Emotional function improved significantly during the six first months, and complaints of nausea and vomiting decreased significantly. Support from grandchildren increased significantly. 'Contact with district nurse' at baseline predicted deteriorated QoL from baseline following six months, as well as 'low level of hope' and 'needing more help in daily living'. About 30% of the total sample deteriorated in QoL from baseline to 6-month follow-up. The findings in the qualitative study showed the essential meaning of the lived experience to be ?Illness as a turning point marking old age?. This was represented by three essences: ?Illness means losing control?, ?Disturbing the family balance? and ?Life and death suddenly apparent?. These three essences were signified in seven constituents: getting cancer meant being forced into the role of a patient, losing control, and being dependent on health care. Balancing one's own needs and burdens with the needs and uncertainties of family members became essential; as a parallel to being conscious of dying and death, hope and enjoyment of life became vital.

The majority of the participants showed an ability to adjust to the new condition. However, about one third had deteriorated in QoL by the significant ?10 units at six-month follow-up, and clinical practice needs to pay specific attention to the most vulnerable groups of elderly persons with cancer. The most vulnerable stood out as those with advanced disease and decreased hope, those with increased need of both formal and informal assistance, those with reduced financial means and those with lung cancer, and thus they need specific attention from health care professionals. In addition, health care professionals need to be conscious that the elderly with cancer are a heterogeneous group. Therefore, it is important to identify the specific meaning that the cancer has for the individual, and to understand the particular abilities he or she has to adapt to the illness and the process of growing old as a part of their life.