Mid Sweden University

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.

BACKGROUND: In Sweden women with newly diagnosed breast cancer are admitted to surgical wards in order to undergo surgery and receive postoperative care. On these wards, nursing staff take care of women both with newly diagnosed breast cancer and those with cancer in advanced stages. Nurses have to meet the varying needs of patients and their relatives. AIM: To describe nurses' opinions of the need for care and support for women and their relatives in connection with surgery for breast cancer, as well as their own need for support on a surgical ward. METHODS: Thirty-one nurses from a surgical ward participated in semi-structured interviews. The interviews were tape-recorded and transcribed verbatim. Thereafter a step-by-step, qualitative content analysis was carried out. RESULTS: The nurses described the need to talk and receive information as being the most important among women and their relatives, as well as among themselves. Only a few nurses mentioned the need for physical care among the women. Contact with relatives was described as being almost nonexistent. There was a discrepancy between what nurses described as important needs and how these needs were provided for. CONCLUSION: This study shows that what the nurses described as being the most important needs, and the way how these needs were provided for, was more often seen from a theoretical point of view with few examples of self-experienced situations in the daily care. Needs among women and their relatives seemed to be not fully known to nurses and therefore, possibly, were not met. Nurses themselves had a pronounced need for support, which was sometimes unsatisfactorily met.

The purpose of this study was to describe the content of caregivers' (health care professionals') presentation of care situations as told at supervision sessions. For 1 year, 21 caregivers in a surgical ward of a county hospital in the middle of Sweden participated in a clinical supervision session 2 hours every third week. The participants in the supervision sessions were divided so as to form three mixed groups composed of registered nurses, practical nurses, physiotherapists, and physicians. The purpose of the supervision sessions was to give caregivers the opportunity to reflect on different care situations in a way that contributed to the development of patient care. The 38 supervision sessions were tape-recorded and transcribed verbatim. The transcripts were analyzed using a qualitative content analysis. The caregivers described difficult care situations focusing on the feelings of patients, relatives, and caregivers, with an emphasis on the caregivers' being dominant. Difficult care situations were described as giving caregivers feelings of discomfort, powerlessness, and reduced self-esteem. These feelings were described as arising in connection with caring for women with advanced breast cancer and other seriously ill patients in an organization lacking clear goals and rules. This study found that supervision sessions offering an opportunity to reflect on the difficult care situations are important for caregivers. These sessions seem therefore to be of vital importance for the future development of cancer care on the surgical ward.