In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

The term user involvement is frequently applied in research. Frameworks for patient and informal caregiver participation as coresearchers in studies concerning patients with lifethreatening 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.

Home-care nurses assist many advanced cancer patients desiring to live in the familiar surroundings of their own home until the day they die. The purpose of this study was to increase the understanding concerning home-care nurse experience with the Norwegian version of the medication kit as a tool in symptom management for the terminally ill. The study had a qualitative, descriptive, and explorative design, based on hermeneutic methodology. Two focus group interviews with 4 subsequent in-depth interviews helped generate data. The nurses reported how thorough planning and clear instructions on medication kit usage gave security and facilitated proper application. Good collaboration with primaryphysicians, including accessibility and clarifying meetings in particular, was necessary. In the past, infrequent use of the medication kit hindered its relevance for symptom management. Home-care nurses were often alone with the responsibility for assessing the patient and administering medications, leading to unjustifiable professional conditions, particularly during night shifts. Thus, clear guidelines, planning and clarifying meetings with primary physicians, helped to facilitate the use of the medication kit.

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.

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 valuebased principles and organizational conditions promoting dignitypreserving 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.

No abstract

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.

No abstract