Patient participation : what it is and what it is not

In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

A systematic review of triage-related interventions to improve patient flow in emergency departments

Background Overcrowding in emergency departments is a worldwide problem. A systematic literature review was undertaken to scientifically explore which interventions improve patient flow in emergency departments. Methods A systematic literature search for flow processes in emergency departments was followed by assessment of relevance and methodological quality of each individual study fulfilling the inclusion criteria. Studies were excluded if they did not present data on waiting time, length of stay, patients leaving the emergency department without being seen or other flow parameters based on a nonselected material of patients. Only studies with a control group, either in a randomized controlled trial or in an observational study with historical controls, were included. For each intervention, the level of scientific evidence was rated according to the GRADE system, launched by a WHO-supported working group. Results The interventions were grouped into streaming, fast track, team triage, point-of-care testing (performing laboratory analysis in the emergency department), and nurse-requested x-ray. Thirty-three studies, including over 800,000 patients in total, were included. Scientific evidence on the effect of fast track on waiting time, length of stay, and left without being seen was moderately strong. The effect of team triage on left without being seen was relatively strong, but the evidence for all other interventions was limited or insufficient. Conclusions Introducing fast track for patients with less severe symptoms results in shorter waiting time, shorter length of stay, and fewer patients leaving without being seen. Team triage, with a physician in the team, will probably result in shorter waiting time and shorter length of stay and most likely in fewer patients leaving without being seen. There is only limited scientific evidence that streaming of patients into different tracks, performing laboratory analysis in the emergency department or having nurses to request certain x-rays results in shorter waiting time and length of stay.

Assessing feasibility and acceptability of study procedures : getting ready for implementation of national stroke guidelines in out-patient health care

BACKGROUND: Even though Swedish national guidelines for stroke care (SNGSC) have been accessible for nearly a decade access to stroke rehabilitation in out-patient health care vary considerably. In order to aid future interventions studies for implementation of SNGSC, this study assessed the feasibility and acceptability of study procedures including analysis of the context in out-patient health care settings. METHODS: The feasibility and acceptability of recruitment, observations and interviews with managers, staff and patients were assessed, as well as the feasibility of surveying health care records. RESULTS: To identify patients from the the hospitals was feasible but not from out-patient care where a need to relieve clinical staff of the recruitment process was identified. Assessing adherence to guidelines and standardized evaluations of patient outcomes through health care records was found to be feasible and suitable assessment tools to evaluate patient outcome were identified. Interviews were found to be a feasible and acceptable tool to survey the context of the health care setting. CONCLUSION: In this feasibility study a variety of qualitative and quantitative data collection procedures and measures were tested. The results indicate what can be used as a set of feasible and acceptable data collection procedures and suitable measures for studying implementation of stroke guidelines in an out-patient health care context.

What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

Challenges of measuring and linking patient outcomes to nursing interventions in acute care settings

Measuring and linking patient outcomes to nursing intervention is an important task that has professional, financial and political ramifications. The importance and complexity of measuring patient outcomes accurately should not be overlooked, as there are a number of emergent factors that influence this process. These include the turbulent context of practise, variations in care due to the large number of health professionals, individual patient characteristics impacting on outcomes, determining appropriate nursing outcome measures, nursing's lack of autonomy within the system and difficulties experienced while trying to link patient outcomes to nursing interventions. So that the results reflect reality, it is important for researchers in the field to take note and consider these factors when measuring patient outcomes. The present article aimed to examine and discuss a number of these factors as they relate to the evaluation of patient care.

Direct patient contacts of dietetic students during their final clinical placement

Direct student-patient contacts, during the professional clinical placement of a Master of Nutrition and Dietetics course, were collected and analysed for the first time using a computerised method. In the final eight-week hospital placement, 26 dietetic students submitted data on direct patient contacts which included: dietetic activities (e.g. assessing, counselling and reviewing); the primary nutritional condition of the patient (e.g. type 2 diabetes and liver disease); and the time spent in contact with patients. The most common dietetic activities were reviews, followed by collection of dietary information and counselling. The most common nutritional condition encountered by students was an inadequate nutrient intake, followed by patients receiving enteral nutrition. Contact time with patients increased over the placement, with proportionately more time spent by students seeing patients independently than when being observed by supervising dietitians. The data collected provided valuable informa tion on the amount of time spent by students in direct patient contacts, the range of dietetic activities undertaken and the amount of time student activities were directly observed. This information will be useful in the development of benchmarks for clinical skill development, hospital and university staff planning and the assessment of the impact of any changes to the format of student placement experience in the clinical setting.

Correction of the copper transport defect of Menkes patient fibroblasts by expression of two forms of the sheep Wilson ATPase

The Wilson disease (WD) protein (ATP7B) is a copper-transporting P-type ATPase that is responsible for the efflux of hepatic copper into the bile, a process that is essential for copper homeostasis in mammals. Compared with other mammals, sheep have a variant copper phenotype and do not efficiently excrete copper via the bile, often resulting in excessive copper accumulation in the liver. To investigate the function of sheep ATP7B and its potential role in the copper-accumulation phenotype, cDNAs encoding the two forms of ovine ATP7B were transfected into immortalised fibroblast cell lines derived from a Menkes disease patient and a normal control. Both forms of ATP7B were able to correct the copper-retention phenotype of the Menkes cell line, demonstrating each to be functional copper-transporting molecules and suggesting that the accumulation of copper in the sheep liver is not due to a defect in the copper transport function of either form of sATP7B.

Physical activity and sedentary behavior: a population-based study of barriers, enjoyment, and preference

The associations of physical activity and sedentary behavior with barriers, enjoyment, and preferences were examined in a population-based mail survey of 1,332 adults. Respondents reporting high enjoyment and preference for physical activity were more likely to report high levels of activity. Those reporting cost, the weather, and personal barriers to physical activity were less likely to be physically active. Preference for sedentary behavior was associated with the decreased likelihood of being physically active, and the weather as a barrier to physical activity was associated with the increased likelihood of sedentary behavior. These constructs can be used to examine individual and environmental influences on physical activity and sedentary behavior in specific populations and could inform the development of targeted interventions.

Number preference in Australian stocks

Stock price rallies/declines often terminate at price levels that are interpreted by many as areas of psychological resistance or support, while an alternative interpretation is that they coincide with price clusters. Some of these price levels tend to repeat with a regularity that is inconsistent with mere chance. In this paper, the existence of price clusters and psychological barriers is tested on a sample of 20 Australian stocks. We consider two number sequences, both derived from a base number of 100, as well as integer price levels. It is shown that Australian stock price data are not uniformly distributed and that for the majority of the stocks, price swing highs and lows are associated with certain recurring price levels. Some of the implications for trading and investing are considered.

Pharmaceuticals and the consumer movement: the ambivalences of 'patient power'

Consumer and patient advocacy groups (PAGs) are important participants in the politics of pharmaceuticals. Yet very little is known about the precise nature and extent of their influence. It is argued in this article that PAGs fulfil a mixed role within the health system at national and transnational levels, and that they are at times fully incorporated into economic and political power structures. Their frequent dependence on pharma industry funding is of particular concern. PAGs provide a means of direct industry interaction with the final customer, thereby partially bypassing and putting additional pressure on doctors and regulators. The article presents the case for research to establish a better empirical base for discussions about the role of PAGs within contemporary neo-liberal governance structures.

Price exhaustion and number preference : time and price confluence in Australian stock prices

Confluence occurs when different trading filters generate signals that point to the same directional move. Using regression analysis, this paper investigates confluence trading signals associated with number preference and price exhaustion, for a sample of Australian stocks. The results show that certain price levels tend to act as psychological barriers, and that price exhaustion signals are a real phenomenon in the Australian stock market. It is shown also that confluence exists in the Australian stock market. Importantly, confluence is associated with price retracements that are of economic and statistical significance, offering profitable trading opportunities. The results suggest that Australian stocks do not follow a random walk.

The relationship between patient blood pathology values and patient falls in an acute-care setting : a retrospective analysis

Few studies have investigated the relationship between patient falls and patient blood pathology values, which can reveal objective information about the health and nutritional status of a patient. It could be that some abnormal values are associated with patients that fall. The objectives of the current study were to determine whether blood pathology values were different in patients who fell compared to patients who did not fall, and whether there was a difference in the type and number of currently documented risk factors for falls found for patients who fell compared to patients who did not fall. A retrospective audit of patient incident reports and medical records was conducted in an acute-care hospital for 220 patients who fell and who did not fall. Faller and non-faller patients were matched by casemix type and length of stay. Findings revealed a significant relationship between patients who fell and the variables of age, confusion status and alkaline phosphatase blood values.

An incremental FP-growth web content mining and its application in preference identification

This paper presents a real application of Web-content mining using an incremental FP-Growth approach. We firstly restructure the semi-structured data retrieved from the web pages of Chinese car market to fit into the local database, and then employ an incremental algorithm to discover the association rules for the identification of car preference. To find more general regularities, a method of attribute-oriented induction is also utilized to find customer’s consumption preferences. Experimental results show some interesting consumption preference patterns that may be beneficial for the government in making policy to encourage and guide car consumption.