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.

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.