In many Western countries as in Sweden, patients have legal right to participate in own care individually adjusted to each patient's wishes and abilities. There are still few empirical studies of patients' perceptions of barriers for participation. Accordingly, there is a need to identify what may prevent patients from playing an active role in own nursing care. Such knowledge is highly valuable for the nursing profession when it comes to implementation of individual patient participation.
To explore barriers for patient participation in nursing care with a special focus on adult patients with experience of inpatient physical care.
Data were collected through 6 focus groups with 26 Swedish informants recruited from physical inpatient care as well as discharged patients from such a setting. A content analysis with qualitative approach of the tape-recorded interview material was made.
The ethics of scientific work was adhered to. Each study participant gave informed consent after verbal and written information. The Ethics Committee of Göteborg University approved the study.
The barriers for patient participation were identified as four categories: Facing own inability, meeting lack of empathy, meeting a paternalistic attitude and sensing structural barriers, and their 10 underlying subcategories.
Our study contributes knowledge and understanding of patients' experiences of barriers for participation. The findings point to remaining structures and nurse attitudes that are of disadvantage for patients' participation. The findings may increase the understanding of patient participation and may serve as an incentive in practice and nursing education to meet and eliminate these barriers, in quality assurance of care, work organization and further research.
Research and discussions on self-care have been concentrated mainly on what happens before the patient decides to see a doctor. Attention could just as well be given to the forms of self-care used while the patient is under medical treatment, and perhaps even more to what self-care is used after the treatment has ended. Data from the Health Survey of 1985 indicate that patients who have seen a practitioner who practises alternative medicine are more likely to use a suitable form of self-care afterwards. This is supported by an interview survey of 150 patients who had visited such practitioners. The patients' attempts to influence the health system have to be regarded as a form of self-care. Many patients' organizations also function as centers which provide information about the quality of the practitioners. The extended health concept gives more authority to health personnel, the extended self-care concept gives more authority to the patients.
On September 2nd, 1998 Swissair Flight 111 crashed in Saint Margaret's Bay, Nova Scotia. Surrounding coastal communities were immediately transformed into disaster response sites. Sixteen community health professionals were interviewed that identified several types of individual and community exposure, including exposure to human remains. The interviews revealed that the coastal communities have responded with silence and stoicism. This silence has been viewed by some health professionals as resilience. The interface of a major disaster, community silence, low help-seeking behaviours, and limited disaster health responses raises the critical question whether this is a profile of resilience or a community silently enduring.
Traditional measurement models of health care utilization are not able to represent the complex structure of health care utilization. In this qualitative study, we, therefore, developed a new model to represent the health care utilization structure. In Norway and Germany, we conducted episodic interviews, participant observation and a concurrent context analysis. Data was analyzed by thematic coding in the framework of grounded theory. Consultations do very often not only have one single reason for encounter. They are usually not independent events but form part of consultation sequences. We could find structural differences between Norway and Germany regarding the flow of information between consultations and which providers are involved in health care in what way. This leads to a sequential model, in which health care utilization is seen as sequences of consultations. Such health care utilization sequences consist of nodes which are connected by edges. Nodes represent patient-provider contacts and edges depict the flow of information. Time and the level of health care providers are dimensions in the model. These sequences can be described by different measures and aggregated on population level. Thus, the sequential model can be further used in analyzing health care utilization quantitatively, e.g., by using routine data.