The aims of this study were to describe and compare quality of life before and after designation to a palliative homecare team in patients with different cancer diagnoses and to identify pre-designation predictors of post-designation global quality of life. We measured patients' quality of life 1 week before designation and 11 days (median time) after with the Assessment of Quality of life at the End of Life (Axelsson & Sjödén 1999). Of 163 eligible patients 63 participated without attrition. Patients' quality of life improved in the physical, psychological, medical and global areas. Six items significantly improved: hours recumbent during the day (P = 0.009), nausea (P = 0.008), anxiety (P = 0.007), getting hold of staff (P = 0.000), received care (P = 0.003) and global quality of life (P = 0.023). Depression/low in mood (r = 0.55) and meaningfulness (r = 0.70) associated to global quality of life. Furthermore, pain (P = 0.028) and meaningfulness (P = 0.028) predicted global quality of life. In the existential area, it is important to further explore how meaningfulness is associated to and predicts global quality of life.

This study describes incurably ill cancer patients' perceptions of the quality of life at the end of life. Purposeful sampling was used to get as comprehensive descriptions as possible about quality of life. Five patients participated in repeated focus groups. Content analysis showed that the patients emphasized what they could perform and enjoy in daily life, not their shortcomings. Five themes were developed: "valuing ordinariness in life," "maintaining a positive life," "alleviated suffering," "significant relations," and "managing life when ill." The themes describe that the patients could participate in daily and social life despite cancer. Relation with family and palliative team deepened during the progress of illness in such that a resonance developed in communication. Other important findings were that patients' memories helped them to maintain a positive life and that the patients used individual strategies to relieve pain by emotional and physical distractions. For the patients, managing life as ill meant taking actions with creative thinking in solving problems as a way to cope and achieve quality of life. These positive findings from the focus groups have led to continued research regarding how patients with incurable cancer perceive quality of life.

Caregivers' perceptions on terminally ill family members' quality of life is rarely described. The aim of this study was to describe caregivers' perceptions about terminally ill family members' quality of life when suffering from cancer. Four caregivers participated in repeated focus group, and the data were analysed using qualitative content analysis. The findings were presented through five themes: 'living a normal life', 'being relieved from burdens', 'having a sense of belonging', 'being a symbol of incurable illness' and 'having a sense of dignity'. We found that to manage daily life it was significant to keep up a normal life and participate in social life. One new insight in this study was that caregivers contributed to an extending understanding to the term meaning in which the sense of belonging was fundamental. An obstacle for the sense of belonging was illuminated as the visible signs of incurable illness that stigmatized the ill person, and influenced the dignity. This study highlights the importance of supportive actions from significant others and healthcare professionals for terminally ill family members' quality of life.

OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.

METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.

RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.

SIGNIFICANCE OF RESULTS: This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.