Aim: The overall aim of the present thesis was to examine, develop and evaluate patient participation in emergency department (ED) for promoting the relief of suffering for patients in care relations, from the perspective of patients and caregivers. Method: The explorative studies (I, II) were based on reflective lifeworld approach and analyzed by phenomenographic method. Data were collected from interviews by patients (9) and caregivers (11) about their conception of patient participation in ED. The methodological study (III) performed analyses and were tested for content, construct and criterion validity as well as homogeneity and stability reliability. The sample for study (III, IV) consisted of 356 patients consecutively cared for in EDs in Sweden. In the evaluating study (IV) the questionnaire Patient Participation Emergency Department (PPED) was used. The statistical methods handled were Student’s t-test, one-way ANOVA and Spearman correlation. Findings: The patients’ conception of patient participation means: being acknowledged; struggling to become involved; and having a clear space (I). The caregivers’ conceptions of patient participation can be divided into three different descriptive categories: Caregivers offer the opportunity for participation, Patients demand participation and Mutual participation (II). A 17- item questionnaire was developed. Two separate factor analyses revealed a distinct four- factor solution which was labelled: Fight for participation, Requirement for participation, Mutual participation and Participating in getting basic needs satisfied. Criterion validity presented showed 9 out of 20 correlations equal or above 0.30. Cronbach’s alpha coefficient ranged from 0.63 - 0.84 and test- retest varied between 0.59 and 0.93(III).The results show that patient participation is low in two dimensions (Fight for participation, Participation in getting basic needs satisfied), reasonable in one dimension (Mutual participation), and high in one dimension, Requirement for participation (IV). Conclusions: Participation does occur on occasion when the circumstances are right despite international and national guidelines that lay down the need for patient participation. Patient participation in EDs is perceived when patients are in contact with caregivers and there is space for collaboration in situations of consistency. However, patient participation cannot be offered in a one-sided caring action. In collaboration patient participation contributes to the relief of suffering in the process of health and patients participate when they are allowed to be the point of departure for caring. However, the results point to a lack of strategy for patient participation and for increased patient participation to take place improvements in external organization requirements are required. The results indicate an amplified clarity in how patient participation can be understood for EDs, in education and community and a scientific tested instrument has made it possible to evaluate patient participation.

Syfte: Syftet var att undersöka patienternas tillfredsställelse med den information de erhåller under inneliggande vård på en allmänmedicinsk vårdavdelning på ett mindre sjukhus i Mellansverige. Vidare var syftet att undersöka om patienterna ansåg sig vara delaktiga i beslut kring behandlingar, undersökningar och omvårdnad. Metod: Kvantitativ deskriptiv enkätstudie. 32 patienter deltog i studien. Datainsamlingen pågick under tio veckor och data analyserades med hjälp av deskriptiv och icke-parametrisk statistik. Resultat: Majoriteten av deltagarna uppfattade att de helt eller delvis fått tillräcklig information gällande sitt sjukdomstillstånd, aktuella behandlingar och undersökningar samt den omvårdnad som utförts av vårdpersonal. Män uppfattade i större utsträckning än kvinnor att informationen hade varit tillräcklig. De flesta patienterna upplevde sig ha fått tid för frågor. Det fanns ett signifikant samband mellan deltagarnas upplevelse av att ha fått tid för frågor och uppfattningen av att ha fått tillräcklig information. De flesta patienterna upplevde att de fått vara delaktiga i beslut under vårdtiden och önskade ej vara mer delaktiga. Patienterna kände förtroende för vårdpersonalen. Slutsats: De flesta patienterna uppfattade sig välinformerade angående sjukdomstillstånd, behandlingar/undersökningar samt utförd omvårdnad. Män uppfattade sig överlag mer välinformerade än kvinnor. De flesta upplevde sig vara delaktiga i beslut som fattades under vårdtiden samt kände förtroende för vårdpersonalen. / Aim: The aim of this study was to investigate in-patients’ satisfaction with given information at a internal medicine ward in a small hospital in Sweden. The aim was also to investigate whether the patients considered themselves being part of decisions about treatments, examinations and nursing care. Method: Quantitative descriptive survey study. 32 patients participated. Data collection lasted for ten weeks and data was analyzed with descriptive and non-parametric statistics. Result: The majority of the patients considered themselves totally or partly informed about their disease, treatments, examinations and nursing care. Men perceived themselves more well-informed then women. Most participants experienced that they were given enough time for questions. There was a significant correlation between the patients’ experience of time for questions and their experience of being well-informed. Most patients experienced themselves participating in decisions during their hospital stay and didn’t wish to participate more. The patients had confidence in the nursing staff. Conclusion: Most patients experienced themselves to be well-informed about their disease, treatments/examinations and nursing care. Men found themselves to be more well-informed then women. Most patients felt that they were participating in decisions and trusted the health-personnel.

Sammanfattning   Bakgrund: När människor blir patienter inom psykiatrisk vård upplever de sig ofta utlämnade till andras välvilja. De kan ofta redan innan ha en skör och svag autonomi och deras egen medverkan och delaktighet i vården kan ibland vara svår att särskilja. Det finns en stor aktualitet i ämnet delaktighet då patienters rättigheter, självbestämmande, inflytande och ansvar i vården på många sätt står i fokus idag.     Syfte: Att beskriva patienters erfarenhet av delaktighet inom psykiatrisk vård   Metod: Metoden är en litteraturstudie där 14 vetenskapliga artiklar som svarar på syftet och frågeställningarna för studien har sökts fram. Analysmetoden baseras på en kvalitativ innehållsanalys där meningsbärande enheter identifieras som vidare kodas i kategorier och utvecklas till centrala teman.   Resultat: Resultatet redovisas under fem huvudteman; att bli sedd, att få veta, att utgå från patienten, att ha kontroll och egenmakt samt att hindras av sitt sjukdomslidande med tillhörande underteman. Resultatet visar att bekräftelse i vårdrelationen är viktigt för att skapa förutsättningar för patientens delaktighet. Om en patient har en känsla av att bli sedd, hörd, förstådd, respekterad som individ och bekräftad av vårdare kan ett ömsesidigt givande och tagande i relation uppstå och utgöra en god grund för delaktigheten. Patientens möjlighet till delaktighet hämmas av den traditionella hierarkiska strukturen i den psykiatriska vården, vilken initierar patientens känsla av maktlöshet och uppgivenhet.   Diskussion: För patienterna krävdes det mer än allmän snällhet och information av vårdarna för att de skulle kunna uppleva sig som delaktiga i en jämställd vårdrelation. Det är först när stödet och informationen förmår möta patientens livsvärld som en genuin delaktighet uppnås.      Nyckelord: patientdelaktighet, brukarmedverkan, psykiatrisk vård, psykisk hälsa / Abstract   Background: When a person becomes a patient in psychiatric care they often feel omitted to the kindness of the care givers. They can often have a history of fragile and weak autonomy and their own involvement and participation in care can sometimes be difficult to distinguish. Patients’ rights, autonomy, influence and responsibility in health care is in many ways in focus today, the matter is therefore of great importance.   Aim: To describe patients' experiences of participation in psychiatric care.   Method: The method is a literature review where 14 scientific articles that matches the purpose and questions for the study have been sought out. The method for analyzing is based on a qualitative content analysis in which meaningful units have been identified and coded into categories to form central themes. Result: The result are presented in five central themes; being seen, to know, to start from the patient's perspective, to have control and empowerment and as being hindered by their illness suffering, with its sub-themes. The result shows that affirmation from the caregiver is important to create conditions for the patient’s involvement. If a patient has a feeling of being seen, heard, understood, respected as an individual and confirmed by caregivers, a mutual give and take in relationships arise, and provide a good basis for participation. The Patient's possibility to be involved is hampered by the traditional hierarchical structure of mental health services, which initiates the patient's sense of powerlessness and despair. Discussion: For the patients, it took more than general kindness and useful information to enable them to experience themselves as equal participants of a care relationship. It is only when the support and information is able to meet the patient's reality as a genuine involvement is achieved.   Keywords: patient participation, user involvement, psychiatric care, mental health

<p><p><strong>Bakgrund:</strong> Patientens roll i vården har under det senaste decenniet förändrats. Dagens patienter är allt mer medvetna om rättigheterna som de har i vården. Alla människor har laglig rätt till information och delaktighet i beslutsfattandet som berör deras egen vård. Sjuksköterskans förhållningssätt är av betydelse för patientdelaktigheten. Forskning har visat att det fortfarande kvarstår brister i patientens rätt till delaktighet, det är därför viktigt att veta vad patienten upplever som delaktighet och hur sjuksköterskan kan främja detta. <strong>Syfte: </strong>Syftet med denna studie är att beskriva patienters upplevelser av delaktighet och hur sjuksköterskan anser att hon eller han ska förhålla sig för att främja patientens delaktighet. <strong>Metod: </strong>Studien är en litteraturöversikt där både kvalitativa och kvantitativa artiklar har använts. <strong>Resultat: </strong>Resultatet visar på att patienterna upplever delaktighet när de får information och kunskap vilket leder till kontroll över situationen. Patienterna upplever också delaktighet när de har en bra relation med sjuksköterskan. De förhållningssätt som framkommer i resultatet för hur sjuksköterskan kan främja patientens delaktighet, är när hon eller han etablerar en bra relation, ger information, bidrar till kontroll och ser till patientens resurser. <strong>Diskussion: </strong>Det är viktigt att sjuksköterskan alltid reflekterar över patientens delaktighet samt får ökad kunskap i detta ämne i både utbildning och yrkesverksamhet.</p></p> / <p><p><strong>Background:</strong> The patient’s role in health care has changed over the past decade. Today they are more aware of the rights they have in care. All people have the legal right to information and participation in decision making concerning their own care. To include the patient in their own healthcare the approach from the nurse is very important. Research has shown that there still remains a gap in the patients right to participation and because of that, it is important to know what the patients experience as participation and how the nurses could promote this. <strong>Aim: </strong>The aim of this study is to describe patients’ experience of participation and how nurses believe that they should approach to promote the patient’s participation. <strong>Method: </strong>The study is a literature review in which both qualitative and quantitative articles were used. <strong>Result: </strong>The result of the study has shown that patient’s experience participation when they get information and knowledge, which leads to patient feel control over the situation. Patients also experience participation when they have a good relationship with nurses. In order to promote patients participation nurse need to establish a good relationship, provide information, help to control and ensure the patients resources. <strong>Discussion: </strong>It is important that the nurse always reflect over the patient’s participation and to increase their knowledge in both education and professional activities</p></p>

Involving patients in medical decisions by acknowledging patients personal values and individual preferences has become an important goal of providing ethical medical care. Despite a general movement towards a model of shared decision-making, many patients do not fully meet their preferred role in practice. The decision whether or not to accept a kidney once it is offered to a patient awaiting transplant has historically been made predominantly by the transplant surgeon with little involvement from the patient. Because dialysis can provide long-term renal replacement, declining a kidney is a viable option. Patient changes over time and inherent heterogeneity of donor kidneys make this an authentic decision requiring careful analysis of costs and benefits from the patient perspective. The purpose of this study is to improve our understanding of how patients and transplant surgeons prioritize different factors when deciding whether or not to accept a kidney that has become available, in order to empower patients to become more involved in the decision-making process. Phase I: We developed a comprehensive list of factors that patients might consider important through qualitative interviews with patients, and deliberation with a transplant surgeon (SK) and a transplant nephrologists (RF). Phase II: We quantified the relative importance of each factor for patients on the transplant list and for transplant surgeons with a computerized survey using Maximum Differences Scaling. We developed relative importance scores using Heirarchical Bayes analysis, and tested for associations between patient characteristics and relative importance scores using Spearmans correlation coefficient and the Mann Whitney U test for continuous and categorical variables respectively. Of the factors evaluated, patients placed the greatest value on Kidney quality, How closely matched you are to the kidney, and How strongly your surgeon feels you should accept the kidney. Relative importance of different factors did not change based on patient demographic characteristics. Patients who are on the waiting list longer give less importance to kidney quality (standard beta estimate -0.23, p value 0.03) and more importance to How difficult it is for you to be matched to a donor (ie whether or not you are sensitized) (standard beta estimate 0.28, p value 0.01). Surgeons placed the greatest value on Kidney quality, How difficult it is for the patient to be matched to a kidney (ie whether or not the patient is sensitized), and The age of the donor. This pilot study suggests a role for standardized education tools to help empower patients to be involved in this difficult decision. Development of decision aids can be guided by the results of this project.

Tidigare studier visar att delaktighet är en förutsättning för lärande. Det finns olika sätt att främja delaktighet men mest framträdande är inverkan av personal och individuell anpassning. Syftet med denna studie var att identifiera och beskriva olika sätt som personer som fått en stomi uppfattar egen delaktighet under stomiträning på sjukhus. Syftet kunde besvaras med hjälp av intervjuer med öppna frågor och fenomenografisk analys av insamlat data. Elva personer som har fått stomi och stomitränat intervjuades. I analysen framkom fyra olika kategorier som beskriver uppfattning av delaktighet under stomiträning: A) Att få vara med och se, B) Att få göra själv, C) Att bli handledd av en kunnig personal, D) Att ha möjlighet att få bestämma själv. De olika sätten att uppfatta delaktighet på visar en variation från att vilja inta en passiv roll i stomiträningen till att vara aktiv och själv fatta beslut om hur stomiträningen skall planeras. Resultatet visar också att personen själv kan ha ett eller flera sätt att uppfatta sig delaktig på men där ett av dem är mer dominant än de andra. / Previous studies showed that participation is a prerequisite for learning. There are various ways to promote participation but the most prominent is the influence of caregivers and individual adaptation.The aim of this study was to identify and describe different ways which persons who underwent a surgery resulting into a stoma to understand theirs own participation during training with the stoma in a hospital. Interviews with open questions and phenomenography analysis was used to answer the aim. Eleven persons who have got an ostomy and stoma trained was interviewed.The analyse resulted in four different categories of describing understanding of participation during training with a stoma: A) To participate by watching, B) To do it myself, C) To be supervised by competent caregivers, D) To have the possibility to decide for myself. These different ways to understand participation shows a variety from wanting to have a passive role in the training with a stoma till being active and make own decisions in planning for the training. The result also shows that one person can have one or more ways of understanding participation but one of those ways is more dominant than other.

No description available.

Syfte: Syftet har varit att beskriva hur patienter uppfattar begreppet egenvård samt deras uppfattningar gällande information om egenvård. Metod: Empirisk studie med kvalitativ design. Strategiskt urval av åtta patienter som genomgått stamcellstransplantation. Datainsamling skedde genom semistrukturerade intervjuer. Resultat: Patienter uppfattar att egenvård är att ta hand om sig så att den egna fysiska samt psykiska hälsan främjas, utan inblandning av sjukvården. De flesta patienter uppfattade att informationen om egenvård hade varit tillfredsställande. Dock förekom svårigheter med att koppla ihop begreppet egenvård med den information som givits om egenvårdande åtgärder. Ett fåtal av informanterna ansåg att informationen om egenvård hade varit av bristande kvalitet. Informanter upplevde svårigheter med att tillgodogöra sig informationen om egenvård. Kontinuerlig och upprepad information upplevdes som positivt. Personalens tillgänglighet samt möjlighet att ta sig tid värderades högt. Majoriteten av de intervjuade saknade ingen information om egenvård men däremot en förklaring av vad själva begreppet egenvård betyder. Slutsats: På hematologkliniken används inte begreppet egenvård när information om egenvård ges till patienter. Därmed finns det ett behov av att definiera och tydliggöra vad begreppet egenvård innebär. Patienter värderar personalens tillgänglighet samt förmåga att ge individanpassad och upprepad information högt, eftersom det ökar förmågan att tillgodogöra sig informationen om egenvård. / Aim: The aim was to describe how patients perceive the concept of self-care and their perceptions concerning self-care information.   Method: Empirical study of qualitative design. Eight patients undergoing stem cell transplantation was strategically selected.  Semi-structured interviews were used. Results: Patients perceive that self-care is to take care of oneself in order to promote physical and mental health, without involvement of health care. Most patients felt that the need of self-care information had been content. Patients had difficulties in linking the concept of self-care with the information that had been given about self-care interventions. A few informants felt that the self-care information had been unsatisfactory. Informants experienced difficulties in assimilating the information. Continuous and repeated information was appreciated. The staff´s availability and  willingness to take time for the patient were valued highly. The majority of the interviewees did not lack any self-care information but were in need of an explanation of what the concept of self-care means. Conclusion: The term self-care is not used when information about self-care is given. The concept of self-care needs to be defined. Staff availability and the ability to provide personalized and repeated information is appreciated, because it increases the ability to assimilate information about self-care.

Despite the fact that patients‘ participation has become an integral part of health care system in health problem solving, it is little known, however, about the preparation of society for these changes. Aim of the study – to evaluate patients‘ role in health care decision-making in primary health care system. Methods. Research instrumentation was developed by using descriptive-analytical method of literature analysis. 464 questionnaires returned out of 550 questionnaires provided. The frequency of response is 84.4 %. Independence of two features was examined by (2 chi-square test of independence. Spearman correlation coefficient was used to evaluate the level of dependence. The data were analyzed by SPSS 9.0 programme. Results. More than a half (56 %) of respondents, especially women (87.8 %) and respondents with university education (88.1 %) know the rights of patients. Respondents with university education (90.8 %) and medical workers (95 %) mostly know about The Act of Patients‘ Rights and Harm Recompense. According to patients, independently from sex, age etc., the most secured rights to health care are the following: to know diagnosis, methods of treatment, risk factors, the right to patients‘ inviolability of private life and confidentiality of health state. From the point of view of medical workers, the most secured rights to health are the following : the right to choose a doctor, a nurse, an institution of health care; the rigth to information about... [to full text]

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.