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Home is regarded as an important and safe place to be when nearing the end of life. However, for some, the home may be a place where people feel anxious and alone. The aim of this discussion paper is to reflect on the contextual and theoretical meaning of home. We will, based on a broader understanding of home, also suggest that home-deaths can take place both in a home-based care context and a facility-based care context, as the meaning of home belongs to the individual. We will end our discussion by concluding that the actions of care and nurses’ attitudes are of vital importance, so that a feeling of home can be created for patients nearing the end of life, irrespective of their context. [ABSTRACT FROM AUTHOR]

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women's identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care. [ABSTRACT FROM AUTHOR]

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients. [ABSTRACT FROM AUTHOR]

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Previously, we described the development of the first part of the framework of Patient and Informal Caregiver Participation in Research (PAICPAIR part 1) and how it was implemented in the empirical study Dying With Dignity . Currently, we present our choices and experiences gained in PAICPAIR part 2, highlighting how PAICPAIR guided us as a modifiable and adaptable framework, with a particular emphasis on identifying and meeting the individual needs of our vulnerable coresearchers. This framework can be used as a methodological approach and study design in future research and inspire researchers to include patients receiving palliative care and informal caregivers-as coresearchers., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with life-threatening illness are however sparse. The PhD project Dying With Dignity-Dignity-Preserving Care for Older Women Living at Home With Incurable Cancer has implemented a thorough cooperation with patients and informal caregivers from the early stages of the research process. A framework for Patient and Informal Caregiver Participation In Research (PAICPAIR) is suggested-creating a stronger foundation for democracy, equality, and research quality by also promoting active participation among vulnerable people experiencing incurable, life-threatening illness, as coresearchers.