Background: Caring for dying children presents special challenges, according to the children themselves, their relatives and healthcare professionals. Objective: The aim of this study was to describe caring as represented in healthcare workers’ experiences of caring for dying children. Method: A phenomenological approach was chosen, in-depth interviews were carried out and data were analysed in four steps focusing on (a) open reading, (b) meaning units, (c) constituents and (d) essence. Ethical considerations: Four nurses in a general acute paediatric care setting (...) in Sweden participated after providing written informed consent. Voluntary participation and confidentiality were ensured, and the study was ethically approved. Findings: The essence of caring for dying children was likened to a musically attuned composition, comprising five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. Presence was found to be a prerequisite for caring when a child is dying. Self-knowledge and support from others can be of help when struggling with emotional pain and injustice. Discussion: Caring for dying children has been found to be a delicate task for healthcare workers all over the world, and the ethical dimension is emphasized in international research. In this study, emotional pain and suffering accompanied caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Conclusion: Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying. (shrink)

Background Home-based care workers mainly work alone in the patient’s home. They encounter a diverse patient population with complex health issues. This inevitably leads to several ethical challenges. Aim The aim is to gain insight into ethical challenges related to patient autonomy in home-based care and how home-based care staff handle such challenges. Research design The study is based on a 9-month fieldwork, including participant observation and interviews in home-based care. Data were analysed with a thematic analysis approach. Participants and (...) research context The study took place within home-based care in three municipalities in Eastern Norway, with six staff members as key informants. Ethical considerations The Norwegian Agency for Shared Services in Education and Research evaluated the study. All participants were competent to consent and signed an informed consent form. Findings A main challenge was that staff found it difficult to respect the patient’s autonomy while at the same time practicing appropriate care. We found two main themes: Autonomy and risk in tension; and strategies to balance autonomy and risk. These were explicated in four sub-themes: Refusing and resisting care; when choosing to live at home becomes risky; sweet-talking and coaxing; and building trust over time. Staff’s threshold for considering the use of coercion appeared to be high. Conclusions Arguably, home-based care staff need improved knowledge of coercion and the legislation regulating it. There is also a need for arenas for ethics reflection and building of competence in balancing ethical values in recurrent ethical problems. (shrink)

Because of the transfer of responsibility from hospitals to community-based settings, providers in home-based care have more responsibilities and a wider range of tasks and responsibilities than before, often with limited resources. The increased responsibilities and the complexity of tasks and patient groups may lead to several ethical challenges. A systematic search in the databases MEDLINE, CINAHL, and SveMed+ was carried out in February 2019 and August 2020. The research question was translated into a modified PICO worksheet. A total of (...) 40 articles were included. The review is conducted according to the Vancouver Protocol. The main findings from the systematic literature review show that ethical challenges experienced by healthcare and social care providers in home-based care are related to autonomy and balancing ethical principles, decisions regarding intensity of care, challenges related to priority settings, truth-telling, and balancing the professional role. Findings regarding ethical challenges within home-based care are in line with findings from institutional healthcare and social care settings. However, some significant differences from the institutional context are also highlighted. (shrink)