The need to deliver high-quality palliative homecare has been underscored in current professional guidelines and demands for efficacy, as well as in the preferences of patients and their families. Indeed, demographic changes and an increased risk of cancer among older people pose challenges to the home healthcare settings in Norway and the rest of the world. Yet, little is known about how older persons experience living with incurable cancer and how palliative home nursing care may increase their quality of life. Moreover, few studies have focused on rural contexts or explored such settings can influence the delivery and outcome of care. In rural contexts, long distances and limited health-related human resources challenge the provision of specialised services, and palliative patients living in rural municipalities most often receive services from district nurses without special training in oncological or palliative care. The aim of this thesis was thus to explore experiences with, and meanings of, rural home nursing care among older persons living with incurable cancer. The thesis consists of five studies, all with qualitative designs, and performed in rural municipalities.Study I was designed as a case study involving individual interviews and observations to explore how older persons diagnosed with incurable cancer and living alone have experienced daily life while commuting for policlinic palliative chemotherapy. By extension, the aim of Study II, conducted as a secondary analysis of material collected in study I, was to illuminate and interpret the meanings of the lived experiences of the participants in that study. By contrast, Study III used individual interviews to illuminate and interpret the meaning of the lived experience of older persons with incurable cancer, yet who have received home nursing care. Meanwhile, Study IV entailed individual interviews with nurses working in home nursing care. Its aim was to illuminate and interpret the meaning of nurses' lived experiences among severely ill patients in their homes. Lastly, Study V involved individual interviews with bereaved family members; its aim was to explore their perceptions of suffering in older persons receiving palliative home nursing care during their final phase of life. The findings of Study I showed that older persons interviewed hovered between hope and fear, experienced stressful commutes, and were constantly exhausted. Experiences with long, tiring taxi trips, of having few supportive people nearby, and of being offered hardly any local healthcare services made these persons highly vulnerable. Nevertheless, their demands were few, and they rarely complained. The findings of Study II showed a complex, yet comprehensive situation in which physical symptoms and emotions had become entangled. Four themes were found: enduring by keeping hope alive, becoming aware of being one one's own, living up to expectations of being a good patient, and being at risk of losing identity and value. Suffering related to care, or the lack therefore, was the most striking discovery, and the older persons seemed to endure by keeping hope alive. Besides hoping for survival, their hopes also included a desire to be recognised and treated with respect, though such often seemed to go unnoticed. The findings of Study III revealed three themes: being content with what one gets, falling into place, and losing one's place. The phrase picking up the pieces was found useful for summing up the meaning of one's lived experience. In that sense, the three themes referred to how the pieces symbolized the remaining parts of life or services available in their environment and how the older persons might see themselves as pieces in a puzzle. Participants exhibited strong place attachment, involving physical insideness, social insideness, and autobiographical insideness, which suggested that the rural context might provide and advantageous healthcare environment. Interestingly, nurses' personal engagement and willingness to be involved in caring relationship appeared to be more important than any special competence or technical skills. The findings of Study IV showed that patients' expressions left impressions that caused emotional waves in the nurses. Four themes were found: being open for the presence of the Other, being satisfied, being frustrated, and being ambivalent. Understanding and balancing this emotional dimension in care seemed to cause confusion and distress for the nurses, and realizing how their feelings might prompt either generosity or aloofness towards the patient was upsetting. Thatinterpretation suggested confusion regarding what it means to be a professional nurse.Lastly, the findings of Study V showed that bereaved family members perceived suffering related to the illness, to the care, and to the life of their ill relatives during their final phase of life. Well-being emerged as having significant, contrasting elements. Well-being related to other people, to the home, and to activity, in all of which the essence referred to a state of dwelling-mobility. The findings suggested that nurses in this context need to seek out patients' and their families members' experiences with comfort and with disturbance. Nursing and palliative care that become purely disease- and symptom-focused can end with all parties' giving up and divert attention from social and cultural factors that may contribute to well-being when cure is not the goal.The findings of this thesis could alter some current knowledge in the field. From a patient perspective, the rural context is not necessarily disadvantaged, care is not necessarily caring, and the alleviation of suffering and cultivation of wellbeing are not necessarily two sides of the same coin. Home nursing care is often seen as a precondition for staying at home. Working in patients' homes allows nurses to witness and become involved in each patient's unique situation. However, impressions of patients' expressions awake feelings in nurses that have the power to bring about caring actions. At the same time, the fear of being unprofessional or unable to deliver proper care bothers nurses and might threaten the closeness that patients desire. Home nursing is care organized in a system in which services are predefined, apportioned, and bound to specific procedures, and the holistic ideals of the palliative care philosophy are often not within the framework of the system in which district nurses work.
Sundsvall: Mittuniversitetet , 2016. , 108 p.
2016-04-27, Juvika, Nord Universitet, Campus Namsos, Norge, 10:00 (Norwegian)
Vid tidpunkten för disputationen var följande delarbeten opublicerade: delarbete v inskickat
At the time of the doctoral defence the following papers were unpublished: paper v submitted