Background: Caring for a partner with primary malignant brain tumour can be a dramatic life-changing event. Primary malignant brain tumour is known to give poor life expectancy and severe neurological and cognitive symptoms, such as changed behaviour and personality, which demand greater caring responsibilities from spouses. Aim: The aim of the study is to explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour. Research design, participants and research context: A phenomenological (...) and hermeneutic qualitative descriptive design was adopted as a method for collecting and analysing data. Ten spouses were interviewed twice using an in-depth, semi-structured interview guide. The interviews took place at the spouses’ homes or at the hospital. Ethical consideration: Ethical matters were considered throughout the research process. Permission from The National Committee on Health Research Ethics and the Danish Data Protection Agency was obtained. Findings: The analysis showed that the spouses perceived daily ethical dilemmas in caring for a partner with primary malignant brain tumour. Their life as well as their partner’s life had changed considerably. The main theme that emerged therefore was ‘oscillating in a changing relationship’. This theme was further elaborated in three subthemes that in more detail demonstrated the dilemmas: ‘doing the right thing in unpredictable daily situations’; ‘torn between patience and guilt’; and ‘living in a time of uncertainty, hope and despair’. Conclusion: Caring for a partner with changed behaviour and personality due to primary malignant brain tumour may involve exhausting ethical caring dilemmas. Spouses’ married life may change to a semi-professional asymmetrical relationship, which is challenged by the oscillation between acting responsibly for their partners’ well-being and caring dilemmas with no answer for what the right thing to do is. Mixed feelings of right and wrong, patience and guilt, hope and despair seem to be spousal companions through their partners’ progressing illness. (shrink)

Background: Background: In general, qualitative research design often involves merging together various data collection strategies, and researcher’s may need to be prepared to spend longer periods in the field to pursue data collection opportunities that were not foreseen. Furthermore, nurse researchers performing qualitative research among patients and their relatives often experience unforeseen ethical dilemmas. Aim: This paper aimed to explore aspects of ethical dilemmas related to qualitative nursing research among patients and their relatives in the intensive care unit (ICU). Research (...) design: This paper is based on a qualitative researcher’s personal experience during a hermeneutic phenomenological study involving close observation and in-depth interviews with 11 intensive care nurses. Data were collected at two ICUs in two Norwegian university hospitals. Ethical considerations: The study was approved by the Norwegian Social Science Data Services (NSD). The Regional Committee for Medical and Health Research Ethics (REK) granted dispensation to the project regarding health personnels confidentiality of the patients who were present during the observation (2012/622-4). Findings: Close observation with nurses in the ICU requires the researcher to balance being a qualitative researcher, an ICU nurse and a sensitive fellow human being open to the suffering of the other—that is, being embodied, engaged and affected by sensitive situations and simultaneously constantly stepping back and reflecting on the meaning of those situations. Conclusions: The qualitative researcher’s ethical awareness also entails knowing and acknowledging his or her own vulnerability, which becomes apparent in the researcher-participant relationship and settings in which being a fellow human always overrules the researcher’s role in ethical dilemmas. (shrink)