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 web-based system for visualizing upper limb motor performance of Parkinson’s disease patients

Objective To design, develop and set up a web-based system for enabling graphical visualization of upper limb motor performance (ULMP) of Parkinson’s disease (PD) patients to clinicians. Background Sixty-five patients diagnosed with advanced PD have used a test battery, implemented in a touch-screen handheld computer, in their home environment settings over the course of a 3-year clinical study. The test items consisted of objective measures of ULMP through a set of upper limb motor tests (finger to tapping and spiral drawings). For the tapping tests, patients were asked to perform alternate tapping of two buttons as fast and accurate as possible, first using the right hand and then the left hand. The test duration was 20 seconds. For the spiral drawing test, patients traced a pre-drawn Archimedes spiral using the dominant hand, and the test was repeated 3 times per test occasion. In total, the study database consisted of symptom assessments during 10079 test occasions. Methods Visualization of ULMP The web-based system is used by two neurologists for assessing the performance of PD patients during motor tests collected over the course of the said study. The system employs animations, scatter plots and time series graphs to visualize the ULMP of patients to the neurologists. The performance during spiral tests is depicted by animating the three spiral drawings, allowing the neurologists to observe real-time accelerations or hesitations and sharp changes during the actual drawing process. The tapping performance is visualized by displaying different types of graphs. Information presented included distribution of taps over the two buttons, horizontal tap distance vs. time, vertical tap distance vs. time, and tapping reaction time over the test length. Assessments Different scales are utilized by the neurologists to assess the observed impairments. For the spiral drawing performance, the neurologists rated firstly the ‘impairment’ using a 0 (no impairment) – 10 (extremely severe) scale, secondly three kinematic properties: ‘drawing speed’, ‘irregularity’ and ‘hesitation’ using a 0 (normal) – 4 (extremely severe) scale, and thirdly the probable ‘cause’ for the said impairment using 3 choices including Tremor, Bradykinesia/Rigidity and Dyskinesia. For the tapping performance, a 0 (normal) – 4 (extremely severe) scale is used for first rating four tapping properties: ‘tapping speed’, ‘accuracy’, ‘fatigue’, ‘arrhythmia’, and then the ‘global tapping severity’ (GTS). To achieve a common basis for assessment, initially one neurologist (DN) performed preliminary ratings by browsing through the database to collect and rate at least 20 samples of each GTS level and at least 33 samples of each ‘cause’ category. These preliminary ratings were then observed by the two neurologists (DN and PG) to be used as templates for rating of tests afterwards. In another track, the system randomly selected one test occasion per patient and visualized its items, that is tapping and spiral drawings, to the two neurologists. Statistical methods Inter-rater agreements were assessed using weighted Kappa coefficient. The internal consistency of properties of tapping and spiral drawing tests were assessed using Cronbach’s α test. One-way ANOVA test followed by Tukey multiple comparisons test was used to test if mean scores of properties of tapping and spiral drawing tests were different among GTS and ‘cause’ categories, respectively. Results When rating tapping graphs, inter-rater agreements (Kappa) were as follows: GTS (0.61), ‘tapping speed’ (0.89), ‘accuracy’ (0.66), ‘fatigue’ (0.57) and ‘arrhythmia’ (0.33). The poor inter-rater agreement when assessing “arrhythmia” may be as a result of observation of different things in the graphs, among the two raters. When rating animated spirals, both raters had very good agreement when assessing severity of spiral drawings, that is, ‘impairment’ (0.85) and irregularity (0.72). However, there were poor agreements between the two raters when assessing ‘cause’ (0.38) and time-information properties like ‘drawing speed’ (0.25) and ‘hesitation’ (0.21). Tapping properties, that is ‘tapping speed’, ‘accuracy’, ‘fatigue’ and ‘arrhythmia’ had satisfactory internal consistency with a Cronbach’s α coefficient of 0.77. In general, the trends of mean scores of tapping properties worsened with increasing levels of GTS. The mean scores of the four properties were significantly different to each other, only at different levels. In contrast from tapping properties, kinematic properties of spirals, that is ‘drawing speed’, ‘irregularity’ and ‘hesitation’ had a questionable consistency among them with a coefficient of 0.66. Bradykinetic spirals were associated with more impaired speed (mean = 83.7 % worse, P < 0.001) and hesitation (mean = 77.8% worse, P < 0.001), compared to dyskinetic spirals. Both these ‘cause’ categories had similar mean scores of ‘impairment’ and ‘irregularity’. Conclusions In contrast from current approaches used in clinical setting for the assessment of PD symptoms, this system enables clinicians to animate easily and realistically the ULMP of patients who at the same time are at their homes. Dynamic access of visualized motor tests may also be useful when observing and evaluating therapy-related complications such as under- and over-medications. In future, we foresee to utilize these manual ratings for developing and validating computer methods for automating the process of assessing ULMP of PD patients.

Signal Processing and patternrecognition algorithm for monitoringParkinson’s disease.

This masters thesis describes the development of signal processing and patternrecognition in monitoring Parkison’s disease. It involves the development of a signalprocess algorithm and passing it into a pattern recogniton algorithm also. Thesealgorithms are used to determine , predict and make a conclusion on the study ofparkison’s disease. We get to understand the nature of how the parkinson’s disease isin humans.

Med rena händer i kampen mot VRI : Sjuksköterskors följsamhet till riktlinjer om handhygien: främjande och hindrande faktorer En litteraturöversikt

Bakgrund: Uppkomsten av vårdrelaterade infektioner (VRI) är ett globalt problem. Den vanligaste smittvägen är via personalens händer. Bra handhygien är väsentligt för att minska VRI. Med bättre följsamhet till handhygien kan uppkomsten av VRI minskas, därför har forskning om följsamhet till handhygien och faktorer som inverkar, stort betydelse. Syfte: Syftet var att sammanställa och beskriva aktuell forskning om sjuksköterskors följsamhet till handhygien och vilka faktorer främjar respektive hindrar följsamheten till handhygien. Metod: En litteraturöversikt som baserades på artiklar publicerade de senaste fem åren, från länder som följer Världshälsoorganisationens (WHO) handhygieniska riktlinjer. Sexton artiklar valdes efter kvalitetsgranskning för analys och beskrivning. Artiklarna bearbetades med innehållsanalys. Resultat: Sjuksköterskors följsamhet till handhygien var låg. Följande främjande faktorer identifierades: handhygien efter patientkontakt, materialtillgång, förebilder, utbildning, verbala och visuella påminnelser, positiva individuella attityder, kvinnlig könstillhörighet, yrkesgrupp, specialitet, patientens skydd, arbetskultur och samhällets inställning till handhygien. Följande hindrande faktorer identifierades: hög arbetsbelastning, bristande utbildning, kunskapsbrist, individuella attityder, hudpåverkan, materialtillgång, arbetskultur och samhällets inställning till handhygien, manlig könstillhörighet, yrkesgrupp, specialitet. Slutsats: Enligt resultat rekommenderas: samspelet med kollegor och patienter, stöd av teamarbete ledare, förebilder, materialtillgång, utbildning, påminnelser, intervention med tillgång till information, stöd, resurser och möjligheter för regelbunden kunskapsuppföljning, motivera till handhygien före patientkontakt, involvera patienter.

Omvårdnadsåtgärder till patienter med diagnosen KOL : En litteraturstudie

Bakgrund: Kronisk obstruktiv lungsjukdom(KOL) är en långsiktig sjukdom som tar tid innan den visar symtom. När patienten kommer och vill ha information och åtgärder för sina symtom har sjukdomsförloppet redan pågått ett tag. Eftersom den är långdragen är omvårdnadsåtgärderna olika beroende på vart i tiden man ligger i sjukdomen. År 2020 kommer denna patientgrupp vara den tredje största i världen, finns det omvårdnadsåtgärder som ökar livskvalitén för denna patientgrupp? Syfte: Syftet med litteraturstudien var att sammanställa resultat avseende forskning om omvårdnad vid kronisk obstruktiv lungsjukdom som leder till förbättrad livskvalité. Metod: Litteratur studie. Resultat: Kunskapsutbytet mellan patient och sjuksköterska: Hur viktigt det är med en klar och tydlig information vid möte mellan sjuksköterska och patient. Att ge stöd och trygghet: Viktigt att sjuksköterskan finns tillgänglig för patienten, underlätta för patienten: Sjuksköterskan har en viktig roll hos patienter med KOL för att förbättra deras förutsättningar för god livskvalité. Slutsats: Viktigt att skapa en tillit mellan sjuksköterskan och patienten, detta skapar trygghet och resulterar till en god fysisk omvårdnad. När trygghet och tillit har byggts upp mellan sjuksköterskan och patienten blir kommunikationen god och man kan tillsammans komma fram till den bästa lösningen för varje enskild patient.

Sjuksköterskans uppfattning om omvårdnadsinsatser som främjar livskvalitet vid bipolär sjukdom : En kvalitativ intervjustudie

Bakgrund: Flera studier har visat att personer med bipolär sjukdom har en sämre livskvalitet jämfört med övriga befolkningen. Som sjuksköterska inom psykiatrisk vård är det viktigt att ha kunskap om sjukdomen för att ge bästa möjliga behandling med mål att stabilisera symtom, förebygga återfall och främja livskvalitet. Syfte: Att utifrån sjuksköterskans uppfattning beskriva vilka omvårdnadsinsatser som främjar livskvalitet vid bipolär sjukdom. Metod: En kvalitativ innehållsanalys som baserades på åtta semistrukturerade intervjuer. Resultat: Resultatet visade tre huvudteman: Kunskap om sjukdomen: betydelsen av att både patient och anhöriga fick kunskap om sjukdomen; Trygghet och kontinuitet i vården: veta var och till vem man vänder sig i vården hade stor betydelse samt Personcentrerad vård: att bli sedd och bemött som en unik person. Slutsats: Patientutbildning där man tar upp vikten av regelbundna levnadsvanor, att undvika stress samt att bli medveten om sina tidiga tecken kan hjälpa att stabilisera symtom och förebygga återfall.