Diss. (sammanfattning) Stockholm : Karolinska institutet, 2010.

Thesis (Ph.D.)--University of Melbourne, Dept. of Medicine (RMH/WH), 2010. / Typescript. Includes bibliographical references (p. 359-392)

Thesis (M.S.)--University of Michigan, 1990.

Bakgrund: Hjärtinfarkt är den vanligaste dödsorsaken i Sverige.   Varje år insjuknar cirka 30 500 män och kvinnor, varav 8 500 avlider.   Hjärtinfarkt uppstår när blodtillförseln till hjärtats kranskärl har varit   avstängt i mer än 20 minuter, vilket leder till en irreversibel   hjärtmuskelskada. Ateroskleros, med flera livsstilsrelaterade riskfaktorer,   är den vanligaste bakomliggande orsaken till att personer insjuknar.   Omvårdnaden kring dessa patienter ser olika ut beroende på var i   sjukdomsförloppet de befinner sig men syftar till att förebygga riskfaktorer,   motivera till livsstilsförändringar och egenvård samt ge stöd utifrån   patientens behov.  Syfte: Att beskriva patienters erfarenheter av livet efter hjärtinfarkten. Metod: Tio vetenskapliga artiklar ligger till grund för denna   litteraturöversikt. Artiklarna kvalitetsanalyserades först för att sedan   sammanställas till nya uppkomna teman efter de likheter som framkom i deras resultatdelar.  Resultat: Resultatet visar på hur livet efter hjärtinfarkten förändrades och hur   det sociala nätverket och sjukvården påverkade patienternas återhämtning. Detta redovisas under följande sex teman och ett subtema: Sjukdomens inverkan på livet med subtemat Ökad kroppsmedvetenhet och förändrade emotioner, Omvärdering av livet, Att söka förståelse kring sjukdomens uppkomst, Det sociala nätverkets betydelse för återhämtning, Upplevelser av sjukvårdens stöd och information och Upplevelser av att göra livsstilsförändringar.  Diskussion: Resultatet diskuteras både utifrån patientens och sjuksköterskans perspektiv, med Orems omvårdnadsteori som teoretisk utgångspunkt. Patientdelaktighet främjas när sjuksköterskan tillsammans med patienten planerar omvårdanden utifrån patientens perspektiv, kunskap och behov. Sjuksköterskan innehar genom sin utbildning specifik kunskap i omvårdnad och är den som ska stödja patienten till en ökad egenvårdskapacitet. / Background: Myocardial infarction is the most common cause of death in Sweden. Every year approximately 30 500 men and women suffer from the disease, of which 8 500 decease. A myocardial infarction occurs when the blood supply to the coronary arteries has been turned off for more than 20 minutes, which leads to an irreversible myocardial damage. Atherosclerosis, with several lifestyle-related risk factors, is the most common underlying cause for falling ill. The provided nursing care for these patients varies depending on where in the course of the disease they are. The aim of the care is to prevent risk factors, motivate to lifestyle changes and self-care, and to support these patients according to their own needs. Aim: To describe patients’ experiences of life after myocardial infarction. Methods: This literature review is based on ten scientific articles. The articles were initially analyzed to see if they met the criteria of quality. Similarities in the articles were then compiled into new emerging themes. Results: The findings show in which way life changed after the myocardial infarction and in which way the social network and the health care service affected the patients’ recovery. These findings are presented in the following six themes with one subtheme: The disease’s impact on life with subcategory Increased body awareness and changed emotions, Reassessment of life, Trying to understand the cause of the disease, The social network’s impact on recovery, Experiences of support and information from the health care service and Experiences of making lifestyle changes. Discussions: Based on Orem’s nursing theory, the findings will be discussed both from the patient’s and the nurse’s perspective. Patient-participation is promoted when the nurse and the patient together plans the nursing care, based on the patent’s perspective, knowledge and needs. The nurse holds through training specific knowledge in nursing care with the purpose to support the patient to an increased self-care-agency.

Syftet med studien var att beskriva upplevelser av delaktighet i meningsfulla aktiviteter för personer som vårdas inom rättspsykiatrisk vård. För att besvara syftet valdes en empirisk kvalitativ design, vilket är lämpad då det handlar om att beskriva personers olika upplevelser av en situation. Data samlades in genom nio semistrukturerade intervjuer med personer som vårdas inom rättspsykiatrisk vård. Dessa analyserades genom kvalitativ innehållsanalys med induktiv ansats. Analysen resulterade i ett övergripande tema; Att balansera nuet och det tidigare livet samt tre kategorier; Att förhålla sig till vardagen och den vårdkontext som finns. En saknad av vardagen och livet utanför. En önskan om att kunna välja aktiviteter som upplevs meningsfulla. Resultatet visade att deltagarna genomgår stora förändringar när det gäller tidigare intressen, vanor och roller på grund av de begränsningar den rättspsykiatriska miljön innebär samt att saknaden efter friheten är stor. Slutsatser som kan dras utifrån studiens resultat är att personer som vårdas inom rättspsykiatrisk vård är i behov av trygghet och gemenskap samt att aktiviteter utförs dels för att de upplevs meningsfulla men framförallt för att få tiden att gå. I denna begränsade miljö kan arbetsterapi spela en viktig roll för att skapa förutsättningar till att uppleva delaktighet i meningsfulla aktiviteter.

Trata-se de um estudo qualitativo e de revisão da literatura cujo objetivo foi a elaboração de materiais informativos para os participantes de projetos de pesquisa clínica, seus familiares e médicos assistenciais, tais como Orientações ao Participante, Orientações sobre Pesquisa Clínica para Familiares, Comunicação de Inclusão em Pesquisa ao Médico Assistente, Comunicação de Encerramento de Participação em Pesquisa, Comunicação de Encerramento de Participação em Pesquisa para o Médico Assistente. Para embasar a elaboração destes materiais foram realizadas entrevistas semi-abertas sobre as percepções de pacientes participantes em um protocolo de pesquisa em Oncologia. Estas informações foram cotejadas com as vivências da aluna, que atuava como coordenadora de estudos clínicos. / It is a qualitative study and literature review whose objective was the elaboration of informational materials for the participants of clinical research projects, their families and care physicians, such as Participant Guidelines, Guidelines on Clinical Research for Families, Communication of Inclusion in Research for the Assistant Physician, Communication of Termination of Participation in Research, Communication of Termination of Participation in Research for the Assistant Physician. To support the preparation of these materials, semi-open interviews were carried out on the perceptions of patients participating in a research protocol in Oncology. This information was compared with the experiences of the student, who acted as coordinator of clinical studies.

Trata-se de um estudo qualitativo e de revisão da literatura cujo objetivo foi a elaboração de materiais informativos para os participantes de projetos de pesquisa clínica, seus familiares e médicos assistenciais, tais como Orientações ao Participante, Orientações sobre Pesquisa Clínica para Familiares, Comunicação de Inclusão em Pesquisa ao Médico Assistente, Comunicação de Encerramento de Participação em Pesquisa, Comunicação de Encerramento de Participação em Pesquisa para o Médico Assistente. Para embasar a elaboração destes materiais foram realizadas entrevistas semi-abertas sobre as percepções de pacientes participantes em um protocolo de pesquisa em Oncologia. Estas informações foram cotejadas com as vivências da aluna, que atuava como coordenadora de estudos clínicos. / It is a qualitative study and literature review whose objective was the elaboration of informational materials for the participants of clinical research projects, their families and care physicians, such as Participant Guidelines, Guidelines on Clinical Research for Families, Communication of Inclusion in Research for the Assistant Physician, Communication of Termination of Participation in Research, Communication of Termination of Participation in Research for the Assistant Physician. To support the preparation of these materials, semi-open interviews were carried out on the perceptions of patients participating in a research protocol in Oncology. This information was compared with the experiences of the student, who acted as coordinator of clinical studies.

The purpose of this study was to describe the perceived information needs of parents and the processes they used to obtain information to manage the care of their child or adolescent following a kidney transplant. The sample consisted of three mothers who were the primary caregivers of their adolescent who had undergone a kidney transplant within the last year. Descriptions of parents' perceived information deficits and the processes used to manage their adolescents' care were generated from the data using a grounded theory approach. Sharing the Challenge was identified as the emerging core category. Sharing the Challenge represented the processes by which mothers, transplant recipients, and the health care team supported their shared goal of optimizing the health status of the transplant recipient. The descriptions of Sharing the Challenge and the related supporting subcategories provide a framework for understanding the processes by which mothers and transplant recipients fulfill caregiving responsibilities following a kidney transplant.

Forskning kring patientdelaktighet i förhållande till omvårdnad har pågått sedan 1960-talet och att göra patienten delaktig i sin egen vård är lagstyrt enligt hälso- och sjukvårdslag. Syftet med litteraturstudien var att beskriva patienters delaktighet inom omvårdnad i sluten somatisk vård. Resultatet visar att patientdelaktighet är multifaktoriellt och behöver förstås i relation till förhållningssätt, roller, kommunikation, villighet och resurser. Personalens förhållningssätt, vilken förmåga de har att bjuda in patienter i en vårdande gemenskap, vilka roller sjuksköterskan och patienten har, om patienten är villig att delta, på vilket sätt kommunikation sker och information delas samt vilka resurser som finns att tillgå påverkar patientens möjligheter att vara delaktig. Litteraturstudien visar att patientdelaktighet har en stor betydelse i den slutna somatiska vården. Patientdelaktighet saknas som vårdvetenskapligt begrepp och detta gestaltar sig genom att det råder förvirring kring tolkningen. Det finns ett behov av att definiera begreppet patientdelaktighet vetenskapligt för att sjuksköterskor ska veta hur de ska förhålla sig till detta. / Research on patient participation in relation to nursing has taken place since the 1960s, and to involve the patient in his own care, is governed by the healthcare system. The purpose of the literature study was to describe patients' involvement in nursing in inpatient somatic care. The result shows that patient participation is multifactorial and needs to be understood in relation to the attitude, roles, communication, willingness and resources. The attitude of the staff, the capacity they have to invite patients in a caring community, the roles the nurse and patient have, if the patient is willing to participate, how communication takes place and information is shared and what resources are available affects the patient's ability to be involved. The literature study shows that patient participation is of major importance in the inpatient somatic care. Patient participation is lacking as a medical science concept, and this is due to confusion about interpretation. There is a need to define the concept of patient participation scientifically in order for nurses to know how to relate.

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.