A life in dignity. A clinical study maintaining dignity of patients in nursing homes

The projects main objective is to strengthen nursing home patients dignity. The results from the study show aspects that maintain and strengthen dignity, and aspects that violate dignity. Dignity was maintained in situations where respect, trust, safety and friendliness were demonstrated in accordance with the international code of nursing ethics. Patients became perturbed when their dignity was violated. This led to conflicts between patients families and nursing home staff. Significant others have a unique possibility to express their experiences with an outsiders perspective that is nevertheless part of the nursing home context. Many significant others were deeply concerned about the well-being of their loved ones when they witnessed violations at the nursing home. Data was also analyzed in light of the assumption that a nursing home culture of caring will influence the residents experience of preserved or violated dignity. The results reveal three overarching patterns: dignity as an expression of being at home, as that something extra, and as the opposite: a culture that does not promote dignity. A caring community is an expression of the caring activities within that culture. A culture that does not express caring seems to be characterized by routines that emphasize organizational effectivity and instrumental goals rather than an individuals dignity and self-perceived needs. A nursing home is a cross road for vulnerable individuals and a power system. The «something extra» is about small, everyday things. Patients dignity is often challenged in the course of their daily activities. These violations are not only related to what (i.e. which activities), but more precisely how and why these activities are conducted with vulnerable patients. A nursing home is supposed to be a home. An affirmative culture of caring confirms the home and all things homey. The home creates a potential framework for how residents participate in daily activities, and this framework can impart meaning and happiness to the residents. The home also represents a place where the residents can reconcile themselves with difficult memories and events. The values in the home are reflected in the staffs actions and the atmosphere in each unit. The inner structure of a culture of caring is characterized by experiences of freedom, community and active participation in daily activities. I a non-affirmative culture a resident is seldom seen as the unique individual he or she is. The staff rarely have time, and there is an absence of spontaneous closeness between resident and staff. Residents remain invisible, and residents and their significant others are excluded from decision making processes. Residents also experience loneliness and feelings of abandonment. The experience of abandonment can be specifically related to being left alone in their rooms, or that they sit for long periods of time alone in a common room, or are placed to fellow residents who are sleeping. Existential abandonment occurs when a resident in need is overlooked. Residents have their dignity taken from them through acts of omission. A combination of physical and psychological humiliation also occur when staff interact or perform tasks without demonstrating sensitivity. Significant others claim that their loved ones lose important aspects in their lives due to things like unnaturally early bedtimes or being excluded from common social events. Dignity means finding affirmation, both as a resident and as a significant other. It is important for them to be taken seriously. Furthermore, significant others have more confidence in the nursing home when the staff is patient with the residents. Dignified care depends on common trust and confidence, integrity, respect and friendliness. Dignity is also an existential experience. This dimension of dignity is expressed in the struggle experienced by significant others when they discover their own vulnerability at the same time as they experience their loved ones suffering. Significant others describe difficult and humiliating situations where residents have chosen not to discuss a situation with the staff, and the incident remains unreported and undocumented. The aim of the PhD study of the project was to explore how people with dementia and their relatives experience the residents dignity being maintained or harmed when they live in a nursing home. The findings show that individuals with dementia experience that their abilities to make decisions in everyday life are restricted, and they experience captivity and homesickness. What the relatives found most important was the residents relational needs and their needs for a confirming and personcentred care. The relatives experienced lack of resources and task-centred care as threats to the dignity. We conclude that, to maintain dignity of people with dementia in nursing homes, we should take them seriously as whole, relational and autonomous human beings.

Rationale Elderly patients will represent a major future challenge within health care services. Attending to the patients need for dignity is regarded as one of the primary objectives of health science (Rankin et al. 1998; Gonzales 2000; Barham 2002; Tann eberger et al. 2002, Edlund 2002, Eriksson 1996, 2001). The study is in line with the increased attention given to care service users own competence in the area of health objectives identified in The Research Council of Norways Program plan for health and care services 2006-2010. Research questions How do patients and their relatives experience that their dignity is promoted and maintained, and what do they think are the reasons when they do not maintain dignity? What kinds of assistance do patients sp ecify as significant in order to be able to live a life in dignity? What do patients and relatives do themselves in terms of living a life in dignity? How may health services be developed for elderly patients in nursing homes in order to strengthen their opportunities to interact with health care personnel and influence the desired outcomes understood as a dignified life? How is patient dignity focused in the institutions philosophy and strategy plans? How do health personnel, leaders and stud ents focus on dignity in their treatment and care services? Which challenges do these groups experience in promoting dignity? What do health personnel and leaders think are the reasons when patients do not maintain their dignity? How may a larger repertoire of services be developed in nursing home care in order to enable patients to experience a dignified life? Method The overall design is clinical application research and cooperative inquiry (Lindholm 2003). In both cooperative inquiry an d clinical application research the informants are looked upon as co-researchers (Hummelvoll 2003). Data collection methods will be interviews, conversations, focus group interviews.