End-of-life care at home: Dignity of family caregivers.

BACKGROUND: Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. AIM: This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. RESEARCH DESIGN AND PARTICIPANTS: This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer's philosophical hermeneutics. ETHICAL CONSIDERATIONS: Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. RESULTS: The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. CONCLUSION AND FINAL CONSIDERATIONS: The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices.

Nurses' professional discretion in the purchaser-provider split in home care in Norway.

AIM: To explore how nurses' professional discretion is operationalized in home care services that follow a purchaser-provider organization in Norway. DESIGN: A qualitative descriptive study. METHODS: Semi-structured interviews with open-ended questions were used, and data were collected from in-depth interviews with 15 registered nurses working in home care in four Norwegian local authority areas between April and November 2020. Braun and Clark's six-step analysis was used to analyse the empirical data. RESULTS: The analysis yielded two main themes, namely 'The purchaser's instructions: facilitating and constraining care' and 'Professional discretion meets the purchaser-provider organisation of healthcare,' with five associated codes. CONCLUSION: Nurses are dependent on an organizational framework due to the complexity of health care services and the number of tasks involved. At the same time, they perform considerable compensatory work and need the ability to be flexible to enable this work and to perform actions related to the unforeseen needs of individual patients or those involving professional discretion. IMPACT: The purchaser-provider model both facilitates and constrains nursing practice and professional responsibility in home nursing. Home nursing services need to be well organized because of their complexity and the wide variety of tasks they involve. In this context, the element of constraint is associated with the need for flexibility and professional discretion. Despite a strict framework, the nurses perform additional and compensatory tasks. Reforms inspired by 'New Public Management,' such as the purchaser-provider split, limit the workload for nurses; however, there is still a need to exercise discretion. The findings of this study may help home care managers and health policy-makers understand the interaction between management logic and health care logic, leading to a more appropriate organization of health care services where the nurses, as actors, gain more trust. IMPLICATIONS: This study highlights home care nurses' opportunities to exercise discretion in an organizational framework that strives towards standardization. The nurses' ability to exercise discretion is important for individual and holistic patient care. At the same time, an organizational framework is needed because nurses cannot attend to all the needs the patients may have, as this will overload both home health services and the nurses.

Exploring home-based care nurses' mindset for nursing practices: a phenomenological study.

BACKGROUND: Home nursing is an essential aspect of healthcare and can address future health challenges. The nature of nursing and its practical applications are of particular interest, as nursing involves technical knowledge, rational procedures, and diverse skills. It is consequential to explore nursing practices in context to understand how nurses navigate their work. This study aimed to explore the characteristics of home care nurse practices and how nurses solve tasks in the context of nursing in home care. METHODS: This is an exploratory qualitative research study using a descriptive phenomenological approach. We reported following the COREQ guidelines. Fifteen in-depth interviews with nurses from four Norwegian municipalities were conducted and analysed according to stepwise inductive analysis. RESULTS: The analysis revealed three main patterns that characterise nursing practices in home care: 'To be vigilant', 'To be an all-rounder', and 'To act with independence'. The content and distinction of these patterns are discussed through a theoretical framework of 'clinical mindlines'. There are multiple mindlines and complex realities for home-based care nursing. The nurses displayed great sensitivity in their practice, were knowledgeable about where they focused their attention, adapted their actions to the context, and demonstrated their independence as professionals. CONCLUSION: Nurses' vigilance and contextual insight are critical to their practice approach and task-solving abilities. These professionals need to manage emergent organisations and exercise independence and professional judgment when adapting their work to the context of home care patients. Future health policy should not strictly be based on standardised guidelines; depending on the context, it is also appropriate to focus on nurses' practical knowledge and the importance of mindlines.