Patientdelaktighet är ett begrepp med flera dimensioner, vilket gör det svårdefinierat. Idag är det en lagstadgad rättighet att patienten ska få möjlighet att vara delaktig i sin vård. Det innebär att patienterna har en självklar plats i vården, en plats som medskapare till sin vård. Sjuksköterskan har ansvar att ge patienten möjligheter för att bli delaktig, genom att arbeta personcentrerat där patienten och sjuksköterskan samarbetar i ett partnerskap. Partnerskapet ska genomsyras av ömsesidig kommunikation, där båda parterna bidrar. Det är viktigt att sjuksköterskan tar del av patientens livsvärld och ser varje patient som en unik individ. Forskning visar att det finns barriärer för delaktighet. Dessa barriärer kan bero på brister i kommunikationen, avdelningsspecifika hinder och föråldrade hierarkiska strukturer i sjukvården som lever kvar. Utifrån dessa barriärer och kunskapen om hur det borde arbetas med delaktighet är frågan hur patienterna upplever delaktighet när de blir sjuka. Syftet med denna kandidatuppsats är att belysa patienternas upplevelse av delaktighet. Litteraturöversikten är utformad för att ge en bredare översikt och är därför baserad på både kvantitativ och kvalitativ forskning. Resultatet visar att patienterna är nöjda när de deltar i vården på en önskad nivå, genom ett partnerskap med ömsesidig kommunikation och där de blir sedda. Det visar också att patienterna upplever hinder för att känna sig delaktiga. De upplever en maktobalans samt kommunikationsbrister. Det här visar på vikten av ett partnerskap mellan patient och sjuksköterska, där delaktighet skapas. / Patient participation is a concept with several dimensions, which makes it hard to define. Today patients have a legal right to have the ability to participate in their own healthcare. This means that the patients have a natural place in healthcare, as co-creators of their care. The nurse has a responsibility to give the patient the opportunity to participate by adopting a person centred approach where the patient and the nurse cooperates in a partnership. The partnership is characterized by mutual communication where both parties contribute. The nurse needs to take part of the patient’s lifeworld and see every patient as a unique individual. Research shows that there are hindrances for participation. The hindrances may be a result of a lack of communication, ward specific barriers and outdated hierarchical structures that still exists. With these hindrances and the knowledge about how participation should be incorporated, the question is how the patients experience participation when they become ill. The aim of this bachelor’s thesis is to illustrate the patients experiences of participation. This literature review is designed to give a wide overview and is therefore based on both quantitative and qualitative research. The results show that the patients are satisfied when they participate in care at a desired level, through a partnership with mutual communication and where they are seen. It also shows that the patients experience hindrances to the feeling of being a participant in their care. They experience a power imbalance as well as a lack of communication. This shows the importance of a partnership between the patient and the nurse, where participation is created.

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<p>Focus of Thesis This thesis focuses on the initial stages of developing the Ontario Decision Aid in Rectal Cancer for Stage II and III patients (ODARC). The ODARC is a DA meant to facilitate relevant information exchange among physicians and patients. Such a tool should enhance patient knowledge and accuracy of treatment expectations by effectively conveying to patients relevant information on treatment options and associated benefits and risks. The ODARC is designed for use during a physician-patient consultation. The ODARC prototype development was guided by a workbook on developing & evaluating patient DAs published by O’Connor & Jacobsen (for efficiency we will call this the Workbook).24 This latter document provides detailed instructions for a 7-step DA development process including: 1) assess patient and provider need 2) assess DA feasibility 3) define objectives of the DA 4) identify the framework to guide DA development 5) select tailored methods of decision support to be used in the DA 6) select the designs and measures to evaluate the aid and, 7) plan dissemination.24 In this thesis we have created a prototype ODARC as informed by Steps 1 to 5 of the Workbook. The last two steps covering evaluation and dissemination are beyond the scope and available resources of this current research effort, and can be considered as future research endeavours. This will be reviewed in the final chapter.</p> / Master of Science (MSc)

Hintergrund: Der Einfluss von rheumatoider Arthritis auf Psyche, Lebensqualität und Alltag der Patienten ist groß. Für eine positive Langzeitprognose sind frühzeitige Diagnosestellung und Therapieeinleitung entscheidend. Diese werden maßgeblich von den strukturellen Gegebenheiten der ambulanten rheumatologischen Versorgung beeinflusst. Hier zeigen sich trotz großer Fortschritte in den letzten Jahren weiterhin Defizite. Anhand einer Patientenbefragung in Leipzig sowie ländlichen Gebieten Sachsens sollen regionale Unterschiede und eventuelle Mängel in der ambulanten Versorgung sowie deren Einfluss auf die Lebensqualität, psychische Gesundheit und Entscheidungsfindungsprozesse untersucht werden. Methoden: Aus sechs Praxen in der Stadt Leipzig und drei Praxen in Kleinstädten (Naunhof, Plauen und Hoyerswerda) wurden Patienten mit der Erstdiagnose rheumatoide Arthritis im ersten Quartal 2011 mittels Fragebögen zu psychischer Gesundheit (Hospital Anxiety and Depression Scale und Short-Form-36-Health-Survey) sowie Entscheidungsfindungsprozessen (Decision Making Preference Scale) befragt. Ein eigens entwickelter Fragebogen erhob Beschwerde- und Behandlungsdauer sowie allgemeine medizinische Daten und Medikation. Ergebnisse: 19 Land- und 38 Stadtpatienten wurden eingeschlossen. Landpatienten suchten signifikant später den Hausarzt auf (Land 15, Stadt 12 Monate, p= .023). Die hausärztliche Behandlungsdauer bis zur Überweisung zum Rheumatologen betrug auf dem Land 5,4 und in der Stadt 2,4 Monate. Bei 70% der Stadt- und 40% der Landpatienten erfolgte die Überweisung innerhalb der ersten sechs Wochen. Die Gesamtdauer von Beschwerdebeginn bis zur Überweisung zum Rheumatologen war mit 20 Monaten auf dem Land signifikant länger als in der Stadt (15 Monate, p= .043). Die Wahl der Medikation durch den Rheumatologen hing signifikant mit der Herkunft der Patienten zusammen (p= .006). Nach Erstkontakt erhielten 65% der Land- und 55% der Stadtpatienten ein DMARD. In beiden Regionen wurde überwiegend mit Glukokortikoiden behandelt (Stadt 82%, Land 71%). Auf dem Land zeigten die Patienten weniger Interesse an Mitwirkung im partizipativen Entscheidungsfindungsprozess und waren mehrheitlich bereit, sich der Meinung des Arztes auch gegen den eigenen Willen anzuschließen. In der Stadt war der Wunsch nach aktiver Teilhabe an medizinischen Entscheidungen bei jüngeren und höher gebildeten Patienten signifikant größer als bei älteren oder bildungsfernen Erkrankten. Mit 21% wiesen tendenziell mehr Landpatienten depressive Symptome auf als in der Stadt (14%). Auf dem Land bestand häufiger der Verdacht auf krankheitsassoziierte Angststörungen. Zusätzlich litten die Patienten hier signifikant stärker unter ihren Schmerzen als in der Stadt (p= .026), wobei sich kein grundsätzlicher Unterschied in der gesundheitsbezogenen Lebensqualität ergab. Schlussfolgerung: In Stadt und Land zeigen sich Defizite in der ambulanten rheumatologischen Versorgung, wobei der Grad der Unterversorgung mit der Herkunft assoziiert ist und Landpatienten signifikant länger bis zum ersten Rheumatologenkontakt brauchen. Maßgeblich verantwortlich hierfür ist die verspätete Vorstellung der Patienten beim Hausarzt ebenso wie die ungleiche Facharztverteilung in Stadt und Land. Patienten auf dem Land sind tendenziell depressiver, passiver und schmerzgeplagter, wobei sich keine grundsätzlichen Unterschiede in der gesundheitsbezogenen Lebensqualität ergeben. Die Ergebnisse spiegeln Ärztemangel und infrastrukturelle Probleme wider. Weiterer Schulungs- und Aufklärungsbedarf zur verstärkten Bildung eines öffentlichen Bewusstseins für die Erkrankung rheumatoide Arthritis wird ebenso deutlich wie die Notwendigkeit für die Bahnung schnellerer Zugangswege zu rheumatologischer Behandlung.

Aim: This study explores what type of information patients and nurses share with, or provide to, each other, and whether or not the information received was relevant and sufficient for their needs. Background: Information exchange, as part of shared decision-making, is advocated in policy and practice throughout the healthcare sector. Much of the literature on information exchange relates to one-to-one consultations with consultants or GPs. To date, no studies have explored information exchange between patients and nurses in ward settings. Nursing literature on patients’ information needs focuses on one-way information provision from nurses to patients, rather than on two-way information exchange between patients and nurses. Methods: Interactions between patients and nurses were observed and audio-recorded using a remotely controlled audio-recording system. Semi-structured individual face-to-face interviews were then conducted to clarify and add to the observation data. A multiple case study design was used for this study: each case comprised one patient, the nurses caring for that patient, and the interactions between them. A pilot study was undertaken to inform the methods for recruitment and data collection for the main study. Results: The pilot study comprised five cases (patients n=5, nurses n=3). Changes to the recruitment strategy for the main study included surgical patients being invited to participate in the same way as medical patients. There were no difficulties with the data collection methods. The main study comprised nineteen cases (patients n=19, nurses n=22). Information exchange seemed unfamiliar to ward-based nurses. The findings show that information exchange may not be a one-off event but a complex series of interactions. Patients did not distinguish between clinical and non-clinical information in the same way as nurses. Primary reasons for patients’ hospital admission were not discussed and nurses did not share information about nursing interventions. The relevance for patients and nurses differed; patients generally wanted information for reducing anxiety and socialization; nurses wanted information for assessment and care planning. In terms of sufficiency, observation sessions highlighted that insufficient information was provided, often due to lost opportunities and paternalistic practice. However, the majority of patients and nurses perceived that they had exchanged sufficient information. Conclusion: This multiple case study provides insights into the type, relevance and sufficiency of information for patients and nurses in ward settings. In ward settings, information exchange as conceptualised by Charles et al. (1997 and 1999) may be difficult to achieve due to the complexity of patient/nurse interactions. Therefore, there are implications for policy makers as policies are not context specific. However, information exchange may be helpful for reducing patients’ anxieties. The concepts of shared decision-making and information exchange are not part of ward-based cultures and philosophies, which suggests implications for patient and nurse education. Research on information exchange between patients and nurses in other ward contexts may contribute to further understanding of information exchange in ward settings.

Two key policy documents are having an impact on health visiting practice in Scotland: Getting It Right for Every Child (GIRFEC) (2013), which seeks to promote all children’s wellbeing, and The Healthcare Quality Strategy for NHS Scotland (2010) which promotes person-centred care. ‘Shared decision making’ is integral to ‘person-centred care’; however no research studies to date have linked shared decision making with health visitor practice. This thesis reports on a descriptive, qualitative research study, which was conducted in two health board areas in Scotland, in order to explore the processes that support effective shared decision making in health visiting practice within the context of implementing GIRFEC. The design was in three phases and used Elwyn’s Framework, of ‘Choice, Options and Decision Talk’ as a structure (2012). Phase 1 consisted of audio recordings of 2 x health visitor: parent encounters when decisions were being made; Phase 2 consisted of semi-structured interviews with 9 x health visitors and 9 x parents who had made decisions within the last 6 months; Phase 3 involved 3 x focus groups reviewing the findings to date and reflecting on current issues when implementing GIRFEC. The framework method was used for analysis and two additional themes were identified: ‘Issues’ and ‘Relationships’. The health visitors demonstrated that they built up trusting relationships with parents; however there was lack of understanding and application of decision making theory which supports analysis, and an outcome focused approach to person-centred planning. This thesis identifies areas for health visitor practice development.

In einer repräsentativen Querschnittsuntersuchung wurden 1219 Multiple Sklerose Betroffene in Deutschland zu den Auswirkungen der Multiple Sklerose auf deren Lebenssituation und ihrer Einschätzung der medizinischen Versorgung befragt. Schwerpunkte der Untersuchung, die auf einem integrativen Konzept der Patientenorientierung beruht, waren: Soziale Auswirkungen, Krankheitswahrnehmung, Alltagsbewältigung, Lebensqualität, Patienteninformation, Arzt-Patient-Beziehung, Therapieentscheidung und das ACT Programm in der medizinischen Versorgung. Negative Auswirkungen der Multiple Sklerose auf die untersuchten Lebensbereiche sind nachweisbar, aber die Einschätzung differiert in Abhängigkeit von der konkreten Lebenssituation und der Persönlichkeit. Der Schweregrad der körperlichen Einschränkungen steht nur bedingt in Beziehung zur subjektiven Einschätzung der Auswirkungen. Es bestätigt sich außerdem die besondere Bedeutung des nahen persönlichen Umfeldes als wichtigste Quelle der Unterstützung Multiple Sklerose Betroffener. Professionelle Unterstützung wird nur in geringem Maß in Anspruch genommen. Die Anforderungen der Befragten an die medizinische Versorgung sind sehr hoch. Negative Bewertungen der medizinischen Betreuung zeigen sich sowohl bei kritischeren Befragten und als auch bei ausgeprägten Autonomiebedürfnis. Die befragten Multiple Sklerose Betroffenen nutzen überwiegend objektive Informationsquellen als allgemeine Informationsbasis und zur Therapieentscheidung. Subjektives Erfahrungswissen wird meist nur ergänzend herangezogen. Veränderungsbedarf besteht in der medizinischen Versorgung im Bezug auf die Integration kritischerer, informierterer, selbstbewussterer Multiple Sklerose Betroffene und in Bezug auf den Zugang zu den vorhandenen Informations-, Unterstützungs- und Beratungsangeboten. / In a representative study 1219 people with multiple sclerosis in Germany were asked about the impacts of multiple sclerosis on their living situation and their estimation of the medical supply. Main topics were: social impacts, perception of the disease, coping with everyday life, quality of life, patient information, doctor-patient-relationship, shared decision making and the ACT programme as tool in the medical supply. Negative impacts on all analysed areas of the living situation could be proved, but the estimation differs in dependence on the specific living situation and the personality. Unlike the physical disability isn''t a predictor of the individual estimation of the impact. People with multiple sclerosis get their main support by relatives and friends. Professional services are rarely used in relation to the aid by the individual social environment. People with multiple sclerosis have very high expectations on the medical supply. The estimation of the situation is relatively negative if the people are more critical as well as if they have a great need for autonomy. The interrogated people with multiple sclerosis use basically and for their therapy decision mostly objective, medical information. Most of them use subjective knowledge based on experiences only additionally. Medical supply should be optimised by better integrating people with multiple sclerosis who are more critical or self confident as well as better informed. Usability and access of the existing offers to inform, support and counsel people with multiple sclerosis have to be improved.

Contexte : Le management de la présentation foetale en siège est complexe car la littérature scientifique est contrastée. Objectif : Mettre en évidence les effets des attitudes et des interventions professionnelles sur le vécu des femmes. Méthodes : Cinq recherches quantitatives et qualitatives, incluant 311 participantes, ont été menées à la maternité des Hôpitaux Universitaires de Genève. Résultats : Les femmes doivent souvent faire un deuil par anticipation de l'accouchement idéalisé. Elles sont très motivées à tenter de corriger la malposition foetale. 69% des participantes ont recours aux médecines alternatives et complémentaires pour se soigner. 68% des participantes ont qualifié la tentative de version céphalique externe (VCE) de « forte à insupportable. Un accompagnement par hypnose ne réduit pas l'intensité de la douleur, comparé à un accompagnement par une sage-femme (échelle visuelle analogique : 6,0 vs 6,3 /10 respectivement, p=0.25). Pour le choix du mode d'accouchement les femmes ont rapporté des conflits décisionnels majeurs. L'information médicale est souvent perçue en faveur de la césarienne élective. Le sentiment de contrôle, les émotions et les premiers instants avec le nouveau-né sont perçus différemment selon le mode d'accouchement, en défaveur de la césarienne en urgence. Conclusion : Un processus émotionnel et décisionnel inattendu et souvent difficile est associé au diagnostic de siège. Développer des outils d'aide à la décision pour la femme, et des techniques de relation d'aide pour les professionnels faciliteraient ces processus. La prise en charge de la douleur durant la tentative de VCE est indispensable / Context: Management of breech remains complex due to divergence of practices and recommendations reported in the literature. Objective: To highlight the effects of health professionals' interventions on women's experiences. Methods: Five research studies qualitative were conducted at the University Hospitals of Geneva, including a total of 311 participants. Two studies used a method with interviews and thematic analysis, two used a quantitative method with a statistical analysis, and one used a mixed methods' design. Results: Breech diagnosis often requires anticipating a disappointment of an idealized childbirth. Women demonstrate a strong motivation to try to turn their fetus. 69% of women use complementary and alternative medicine (CAM) for their treatment. 68% of participants qualified external cephalic version (ECV) as "strong to unbearable". An accompaniment by a hypnotist compared to a midwife did not decrease pain intensity (visual analogic scale: 6.0 vs 6.3/10, respectively; p=.25). For the choice of breech delivery mode, women reported strong decisional conflicts. Medical information is often perceived in favour of a planned caesarean. Feelings of control, emotions and the first moments with the newborn are perceived differently and, notably, negatively in the case of emergency ceasarean section. Conclusion: A difficult emotional and decision-making process is associated with term breech. Use of CAM should be considered by professionals. Developing tools to assist women, and relationship techniques for professionals could facilitate these processes. Reduction of pain during ECV is necessary

Le discours sur l'Autre s'ancre dans le discours médical. Mais de quel Autre s'agit-il ? De quelle identité parlons nous dès lors qu'il s'agit d'altérité, de reconnaissances et de vulnérabilités du sujet de soin ? Qui reconnaît-on ? Nous explorons ici les équilibres relationnels au sein de la relation soignant-soigné en Orthopédie dento-faciale hospitalière. A travers une l'approche structurale des représentations sociales, via l'utilisation de cartes conceptuelles, est interrogé le rapport des partenaires thérapeutiques à l'objet prendre soin, notion symbolique et indicible de l'activité soignante. Introduire le prendre soin revient à souligner ce que la relation contient de dimension à la fois éthique, technique et politique. Avec la notion d'accueillance du sujet, élément matriciel central révélé par l'analyse de la représentation, lors des questionnaires réalisés, se dessinent les enjeux identitaires de la reconfiguration contemporaine de la relation de soin, modèle hybride entre une forme atténuée de paternalisme médical et une libéralisation relative. Cette perspective novatrice nous autorise à interroger ces différents registres de valeurs, qui sont autant de témoignages et d'illustrations de la notion de personne. Cette dialectique du même et de l'Autre, de l'identité et de la reconnaissance des acteurs, ouvre ainsi un débat de nature à la fois théorique, éthique et politique autour de l'espace relationnel du soin. / A discourse focused on the Other is firmly anchored in medical discourse. But what Other is being spoken about? What identity are we talking about when considering the otherness, recognition and vulnerability of the recipient of care? Whom are we recognising? Here, we will be exploring the relational balance within the patient-carer relationship in the field of dentofacial orthopedics. A structural approach to social representations, using concept maps, will be adopted in order to examine the relationship of the therapeutic partners to the concept of care provision - a symbolic component of the treatment process which is difficult to define explicitly. Introducing the notion of care provision means placing an emphasis on the ethical, technical and political content of the care relationship. The notion of the favourable reception of the patient, a central element of the relationship which is revealed by an analysis of representations based on questionnaires, highlights the role of identity in the contemporary reconfiguration of the care relationship - a hybrid model which combines a modulated form of medical paternalism and comparative emancipation. This original perspective enables us to examine these various value registers, which illustrate and testify to the notion of the individual. This dialectic of sameness and the Other, of the identity and the recognition of the participants, thus gives rise to a debate, simultaneously theoretical, ethical and political, focused on the relational space associated with care.

En France, le cancer du sein est le cancer le plus fréquent chez les femmes et la deuxième cause de décès par cancer. Si la mortalité relative du cancer du sein a diminué ces dernières années, de nombreux progrès restent à faire pour les 20 à 25 % de patientes qui évoluent vers un stade métastatique. Cette étude s’appuie sur la réalisation de 103 entretiens semi-directifs réalisés auprès d’acteurs de la prise en charge en oncologie et de patientes atteintes de cancer du sein métastatique. L’objectif de ce travail de thèse était d’étudier : l’impact des nouvelles thérapies ciblées sur l’organisation de la prise en charge et leur diffusion, le vécu des patientes avec les traitements et leur adhésion thérapeutique. Nous avons montré, dans un premier temps, que les nouvelles thérapies ciblées orales modifient la prise en charge traditionnelle des patientes qui restent moins dans la sphère d’influence de la structure de soins et qu’il existe de nombreux freins à la diffusion de ces traitements chez les oncologues. Dans un deuxième temps, nous avons mis en avant les représentations positives des patientes sur les thérapies ciblées orales qui sont sources d’espoir et améliorent la qualité de vie. Pour autant, le vécu au quotidien vient parfois nuancer ces représentations et peut révéler des freins à l’adhésion thérapeutique tels que l’apparition d’effets secondaires ou les responsabilités engendrées par la demande d’autonomie. Enfin, dans un troisième temps, nous avons mis en exergue le manque de connaissances des patientes sur les innovations thérapeutiques et l’importance de la décision partagée avec l’oncologue tout particulièrement face à la chronicisation progressive de certains cancers du sein métastatiques. / In France, breast cancer is the most common cancer amongst women and the second cause of cancer death. Although breast cancer relative mortality has decreased significantly in recent years, there is still a lot to be done for the remaining 20% to 25% of patients who have metastasized. This study is based on 103 semi-structured interviews carried out with oncology healthcare professionals and metastatic breast cancer patients. The aim of this work was to study the impact that new targeted therapies can have on managing the patient’s care and their diffusion, the patients’ experiences with these treatments, their social representations and their therapeutic adherence. First, we showed that new oral targeted therapies disrupt the traditional steps in a patient care. Patients arefar less in the hospital’s sphere of influence and there are many barriers to the dissemination of these treatments for oncologists. Second, we highlighted the positive representations of oral targeted therapies that patients have, which is bringing them hope and improving their quality of life. However, the day-to-day experience with the treatment sometimes moderates these representations and may reveal obstacles to their therapeutic adherence such as side effects or the responsibilities created by the demand for autonomy. Finally, we showed the lack of patients’ knowledge about therapeutic innovations and the importance of the implementation of shared decision making with the oncologist, especially in the face of the progressive chronicisation of a number of metastatic breast cancers.