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.
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