The narrow treatment road to survival: Everyday life perspectives of women with breast cancer from Iraq and the former Yugoslavia undergoing radiation therapy in Sweden.

This study aimed at exploring how women from Iraq and the former Yugoslavia, diagnosed with breast cancer and living in Sweden, experience their everyday life during radiation therapy. A qualitative research design was used comprising interviews with ten women, five originating from Iraq and five from the former Yugoslavia. Striving to survive, the women experienced their everyday life during radiation therapy as extremely challenging. This experience can be placed into three categories: strategies for survival, keeping up appearances and staying in control. Because of these specific challenges, immigrant women may need additional information and guidance in conjunction with the diagnosis, which may enable them to identify possible sources of support from those closest to them. Also, greater attention should focus on acknowledging the woman behind the diagnosis, regardless of her origin, to develop an individualised support programme to help her cope with everyday life during radiation therapy.

Potential adult sibling stem cell donors' perceptions and opinions regarding an information and care model.

The first international recommendations and guidelines for the care of sibling stem cell donors were established in 2010, and have not yet been evaluated. However, a model for information and care of adult potential sibling stem cell donors (the IC model) developed and introduced at the Skåne University Hospital, Lund, Sweden, in 2005 conforms closely to them. The IC model aims to protect the privacy of potential donors, support and respect their free choice, and identify quickly those unwilling or unable to donate and thus minimize delay in seeking alternative donors. To evaluate the IC model a questionnaire survey in 2010 gathered the perceptions and views on information provision; influences over decision making; and care provision under the IC model of 148 adult siblings informed about SCT donation, and asked to undergo HLA-typing since September 2005 at the hospital. The results suggest the IC model works well but highlights areas for improvement, such as in delivery of HLA typing results to non-matched siblings, and a need to further prevent complicating influence from health professionals and relatives on the decision to undergo HLA typing. Thus improved, the IC model could provide the groundwork for other SCT units seeking to implement the recommendations and guidelines.

The breath of life - womens' experiences of breathing adapted radiation therapy.

PURPOSE: To describe and analyze how women with breast cancer experience breathing adapted radiation therapy (BART) and to explore how women manage daily radiation therapy. METHOD: Individual interviews were conducted with 20 women treated with BART for breast cancer concerning their perception of radiation therapy. The transcribed interviews were analyzed using qualitative content analysis. RESULTS: 'The breath of life' was the overall theme, as the women experienced the breathing as a way in which to influence their treatment and thus their survival. 'Participating in one's treatment, for good or ill', was the main category with four subcategories, 'Knowing one has done something good', 'Getting an extra bonus - healthwise', 'The experience of being in control' and 'Being in a high-technology environment'. The breathing technique became the strategy by which they could manage their treatment and gave them a sense of participation which led to a feeling of being in control. The women also felt that breathing benefited their health both mentally and physically. The high-technology environment was experienced as both hopeful and frightening. CONCLUSION: Survival or increasing the chances of survival, are of ultimate importance for a woman with breast cancer. BART requires commitment from the women, which was perceived as offering them an opportunity to participate in their own treatment, for their survival. Increasing the women's possibilities to participate in their treatment benefits their health and welfare during an otherwise turbulent time and allow the rehabilitation process to start during treatment.

Factors associated with changes in quality of life in patients undergoing allogeneic haematopoietic stem cell transplantation.

It is well known that patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) experience changes in quality of life. We investigated factors associated with quality of life changes in adult HSCT patients. The Functional Assessment of Cancer Therapy - Bone Marrow Transplantation (FACT-BMT) scale, supplemented with the Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp) subscale, was administered on three occasions, immediately before transplantation, 100 days and 12 months after transplantation. Analyses of nine selected factors were made where changes in quality of life were found. Seventy-five patients were included and 40 of these completed the study. Emotional well-being was found to improve between the baseline and 100 days, while all other dimensions deteriorated, including overall quality of life. Physical and social/family well-being deteriorated between the baseline and the 12-month follow-up, while emotional well-being improved. The main factors associated with deteriorating quality of life over time were found to be significant infections, female gender and transplantation with stem cells from a sibling donor. In our further studies we aim to focus on the relationships between patients and sibling donors in order to improve the care. Careful attention must be paid to continuous adequate information during the transplantation procedure.

From cure to palliation: concept, decision and acceptance.

The aim of this paper is to present and discuss nurses' and physicians' comments in a questionnaire relating to patients' transition from curative treatment to palliative care. The four-page questionnaire relating to experiences of and attitudes towards communication, decision-making, documentation and responsibility of nurses and physicians and towards the competence of patients was developed and sent to a random sample of 1672 nurses and physicians of 10 specialties. The response rate was 52% (n = 844), and over one-third made comments. The respondents differed in their comments about three areas: the concept of palliative care, experiences of unclear decision-making and difficulties in acceptance of the patient's situation. The responses are analysed in terms of four ethical theories: virtue ethics, deontology, consequentialism and casuistry. Many virtues considered to be appropriate for healthcare personnel to possess were invoked. Compassion, honesty, justice and prudence are especially important. However, principles of medical ethics, such as the deontological principle of respect for self-determination and the consequence of avoidance of harm, are also implied. Casuistry may be particularly helpful in analysing certain areas of difficulty-namely, what is meant by "palliative care", decision-making and accepting the patient's situation. Keeping a patient in a state of uncertainty often causes more suffering than necessary. Communication among the staff and with patients must be explicit. Many of the staff have not had adequate training in communicating with patients who are at the end of their life. Time for joint reflection has to be regained, and training in decision-making is essential. In our opinion, palliative care in Sweden is in need of improvement.

Distress and coping in cancer patients: feasibility of the Icelandic version of BSI 18 and the WOC-CA questionnaires.

The aim of this study was to test the feasibility of two instruments within an Icelandic context, the Brief Symptom Inventory 18 (BSI 18) and the Ways of Coping Inventory--Cancer Version (WOC-CA) with specific focus on gender and type of treatment and coping techniques among cancer patients during time of treatment. The sample consisted of 40 cancer patients in three oncology outpatient clinics in Iceland, 53% were women and 47% men. The majority of the participants belonged to the age group 51-70. Cronbach alpha, means, confidence intervals and standard deviations were used for analysis as well as Mann-Whitney U-test for testing differences between genders in relation to psychological distress and coping. Anxiety was the factor causing the greatest distress, mainly reported by patients receiving chemotherapy. More women experienced depression than men, women (18.4%), men (8.3%). Distancing was the most frequently reported coping strategy, and men seemed to focus on the positive side more often than women did (P < 0.01). Although the results should be approached with caution, as the sample size was small, they do provide support for the strength of the measurements. Also the findings indicate that gender differences should be taken into account.

Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis.

For the individual as well as for those caring for the patients, the diagnosis of amyotrophic lateral sclerosis (ALS) provides a great emotional challenge. Many factors, including existential distress, contribute to the emotional strain of patients with ALS. This study focuses on patients diagnosed with ALS and how they communicate existential issues related to meaning and guilt, relations, diagnosis and information, physical inability, and dying with dignity and respect for the person. The results of the present study indicate that (1) patients experience a number of problems, particularly in connection with physical inability, (2) the need to confide in someone is not particularly strong, (3) central for the value of life is to be respected as a person, (4) existential issues are of great importance to the patients.

Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: comparing needs.

The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers' involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease, and experience the problems and needs in the same way as professionals. By interviewing ALS patients and close relatives to ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the the process of the disease, in different ways. Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.

Existential issues in palliative care--interviews with cancer patients.

A minority of terminally ill patients achieve a peaceful death. Many factors, including existential distress, contribute to the emotional disquiet of patients. This study focuses on the reactions of terminally ill cancer patients to questions concerning existential issues within the themes of meaning, relations, autonomy, guilt, dignity, and communication. The results of this study indicate that patients experience a number of problems dealing with existential issues, consider these questions important, and wish to be able to discuss these types of questions with someone.

Challenging assumptions in end-of-life situations.

An actual case is used to highlight ethical and psychological problems which may arise in the care of terminally ill patients. The case is structured and analysed, focusing on five different situations in which more than one alternative action is possible. This study shows that between description and prediction on the one hand, and decision making on the other, the interpretation of the situation and the consideration of possible alternative actions both play an important role. Different factors that may influence the interpretations made by the staff include their values, knowledge, experiences and empathy.