Childhood experiences pursue adulthood for better and worse: a qualitative study of adults' experiences after growing up with a severely mentally ill parent in a small-scale society.

BACKGROUND: Growing up with a severely mentally ill parent can impact on subsequent adult life, and it can be extra challenging in a society with a small population, known as a small-scale society. Life in a small-scale society is characterised by multiple close relationships, lack of anonymity and a conservative attitude towards normal behaviour. AIMS: To look at the impact of growing up with a mentally ill parent on adult life in a small-scale society. METHODS: Data from semistructured interviews with 11 adult children of severely mentally ill parents were reanalysed and subjected to secondary analysis. RESULTS: The additional analysis resulted in four central themes: 'becoming open and courageous', 'seeking and giving help', 'feeling uncertain and different' and 'being resilient and sensitive'. These were conflated into an overarching theme: 'childhood experiences track into adulthood for better and worse'. The themes elucidate a diverse big picture and encompass positive and challenging features of adult life in a small-scale society. CONCLUSIONS: The study ends with recommendations for the early establishment of collaboration and family-focused interventions with mentally ill parents and their children.

Ethical dilemmas experienced by spouses of a partner with brain tumour.

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.

Ethical challenges embedded in qualitative research interviews with close relatives.

Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforeseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence, respect for human rights and respect for autonomy through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative research interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers' premises to react to unexpected situations and act in a sound ethical manner must be enhanced, and there is a need for an increased focus on the researchers' ethical preparation and to continually address and discuss cases from their own interviews.