published_or_final_version / Medical Sciences / Master / Master of Medical Sciences

Résumé : Contexte : La participation des patients et de leurs proches au processus de choix de soins ainsi que l’implication des différents professionnels de la santé dans ce processus sont des priorités pour améliorer la qualité des soins. Objectifs : L ’objectif de cette recherche était de décrire comment le processus de communication entourant le choix de soins entre les professionnels, le patient et ses proches pouvait être amélioré dans le contexte de maladies graves. Suivant une perspective de recherche-action, ce projet visait également à élaborer une intervention pour favoriser ce processus. M éthode : Deux séries de quatre entretiens avec des professionnels de la santé du Centre de santé et de services sociaux de Rouyn-Noranda (CSSSRN) ont été menées entre 2009 et 2010. Les groupes représentaient des équipes (a) des soins intensifs et de l’urgence, (b) des étages de médecine et de chirurgie, (c) des soins de longue durée et de la réadaptation, (d) des soins à domicile et de cliniques externes. La première série d’entretiens a fait l’objet d’une analyse thématique alors que la deuxième série a fait l’objet d ’un questionnement analytique. Résultats : Vingt-sept et 29 participants représentant 9 professions de la santé ont respectivement participé aux entretiens de la première et de la deuxième série. La première série d’entretiens a révélé que tous les professionnels de la santé jouent un rôle dans le processus de communication entourant le choix de soins. Des stratégies utilisées par les professionnels pour favoriser la participation du patient et de ses proches à ce processus sont aussi ressorties de même que des moyens de communication utilisés entre les professionnels. Un outil de communication multidisciplinaire a été conçu à la lumière des résultats et la feuille de Niveaux d ’intervention thérapeutique (NIT) du CSSSRN a été modifiée. La deuxième série d ’entretiens a mis en relief qu’un outil de communication multidisciplinaire permettrait une meilleure reconnaissance des rôles joués par les professionnels non médecins et qu’un outil avec des choix d’objectifs de soins plutôt que des niveaux d ’interventions favoriserait la participation des professionnels non médecins, du patient et de ses proches au processus de choix de soins. Enfin, la pertinence d’un outil de référence avec des stratégies de communication pour discuter des choix de soins a été soulignée. Conclusion : Ce projet de recherche-action a permis de mieux connaître les rôles que jouent les professionnels non médecins dans la communication entourant le choix de soins et de faire ressortir des pistes de solution pour améliorer l’impact de leur participation et en accroître la légitimité. Finalement, trois outils pour améliorer la communication entourant le choix de soins ont été élaborés dans le cadre de cette recherche-action. // Abstract : Background : The involvement of patients, patients' kin and health care professionals in the communication surrounding the medical decision making process must be improved to insure health care quality. Objectives : The objective of this research was to describe how the communication between a patient, his kin and his health professionals could be improved in regards to the medical decision making process for severe illnesses. Following an action research perspective, this project also aimed to develop an intervention to facilitate this process. Method : Two rounds of four group interviews were conducted with professionals from a regional health center in northern Quebec (Centre de sante et de services sociaux de Rouyn-Noranda: CSSSRN) between 2009 and 2010. The groups represented teams from (a) the intensive care unit and the emergency room, (b) medical and surgical wards, (c) long term care and rehabilitation, (d) home care and specialized outpatient clinics. The transcripts from the first round of interviews were submitted to a thematic analysis while the ones from the second round were submitted to an analytical questioning. Results : Twenty-seven and 29 participants representing 9 health care professions participated to the interviews of the first and second rounds respectively. The first round of interviews revealed that all the health care professionals are involved in the communication associated with the medical decision making process. Strategies used by professionals to improve the participation of patients and patients' kin in the process of choosing care were identified, as well as relevant means of communication used by the professionals amongst themselves. The results inspired the development of a multidisciplinary communication tool and the revision of the decision-making tool used in the health center where the research was conducted. The second round of interviews demonstrated that a multidisciplinary communication tool could allow a better acknowledgement of the roles played by non-doctor professionals, and that a decision-making tool with goals of care rather than levels of care could improve the participation of patients, patients' kin and health care professionals in the choice of care. Finally, a reference tool guiding the communication surrounding the medical decision making process was suggested. Conclusion : This action research project allowed a better understanding of the roles played by non-doctor professionals in the communication surrounding the medical decision making process, and suggested solutions to improve the impact and the legitimacy of their involvement. Finally, three tools to improve the communication around choices of care were developed.

Bakgrund: Trots allmänna råd och riktlinjer råder stor brist på nutritionskunskaperna inom hälso- och sjukvården i hela Europa. Många äldre riskerar att drabbas av undernäring och får ett minskat välbefinnande och en för tidig död. Genom att arbeta med att personanpassa kosten kan patienten få bli aktiv i egna beslut som påverkar dennes liv och hälsa. Syfte: Syftet med studien var att belysa omvårdnadspersonalens erfarenheter av kost som ges personanpassad på ett korttidsboende för äldre. Metod: I denna studie användes induktiv ansats där datamaterialet analyserades med kvalitativ innehållsanalys. Sex omvårdnadspersonal intervjuades på ett korttidsboende för äldre i södra Sverige. Resultat: Ur analysen av datamaterialet fyra kategorier; utgår från patientens syn på situationen, möjliggör val, möjligheter i måltidsmiljö, begränsningar i arbetsmiljön med åtta underkategorier. Slutsats: Omvårdnadspersonalen kan ge en personanpassad kost om det erbjudande matsortimentet blir bredare och genom förändringar på arbetsmiljön. / Background: Despite general recommendation and guidelines, there is lack of nutrition knowledge in healthcare throughout Europe. Many elderly people are at risks of malnutrition. They expericence a decline in well-being and an untimely death. By working with a personalized diet, may patient become more active in decisions affecting their lives and health. Purpose: The aim of this study was to elucidate nursing staffs experiences of diet given personalized on a short-term housing for the elderly. Method: In this study, an inductive approach in which the data were analyzed using qualitaitive content analysis. Six nursing staff were interviewed on a short-term housing for the elderly in southern of Sweden. Results: From the analysis of the data four categories; the patient´s view of the situation, allowing choices, oppotunities in the culinary environment, limitations of working with eight subkategories. Conclusion: Nursing staff can provide a personalized diet if the offer a wider of food range and through changes the work environment. / <p></p><p></p>

Begreppet brukarsamverkan lyftes fram i Sverige i samband med WHO ́s Sundsvalls-konferens 1991 som ”essensen i det demokratiska folkhälsoarbetet”. Samverkan, där handikapp- och patientorganisationer är delaktiga i planering av hälso- och sjukvård har varit aktuellt i mer än 35 år, man utvecklade former för handikappråd redan 1970. Ändå finns det mycket lite empirisk forskning på området. Syftet med uppsatsen är att få en fördjupad kunskap om brukarsamverkan samt att erhålla ett vidare perspektiv genom att jämföra utvecklingen i Sverige med Storbritannien utifrån frågeställningarna: Vilka motiv finns för samverkan, vilka faktorer påverkar och vilka former finns för samverkan och hur stämmer dessa med existerande teorier? Arbetet är upplagt i tre delar, en litteraturstudie med material från Storbritannien, en dokumentanalys av material från Stockholms läns landsting och en intervjuundersökning som gjordes 1999 med representanter för förvaltning, sjukhus och handikapporganisationer inom SLL. Resultatet visar att brukarsamverkan anses som något önskvärt i bägge länderna. Motiven beskrivs som fördjupad demokrati, en förbättring av vårdkvalité genom överföring av kunskap och erfarenhet från brukare till de som planerar och beslutar om vård. Ett tredje motiv skulle kunna vara att ”förankra” neddragningar och ge underlag till prioriteringar, något organisationerna inte vill delta i. Trots att samverkan i Sverige underlättas av folkrörelsetraditionen med många erkända organisationer, hindras effektiv samverkan av oklara definitioner, diffusa mål och orealistiska krav på organisationernas representanter. Aktiviteten stannar på en nivå som stämmer med begreppen ”konsultation” eller ”samråd / The concept of “user involvement”/collaboration in Sweden was described at WHO:s conference in Sundsvall 1991 as “the essense of a democratic health promotion approach”. User involvement in the form of handicap or patients ́ organizations participating in the planning of health care has been of interest for more than 35 years. Work had begun with user groups in Sweden as early as 1970, but there is very little empirical research in the area.The purpose of this dissertation is to further knowledge in the area of user involvement/ patient collaboration and to gain a wider perspective by comparing developments in Sweden with the United Kingdom. What are the motives behind user involvement? What factors influence user involvement? What forms exist and how do they compare with existing theory on collaboration? The dissertation is in 3 parts: A literature study based on material from the United Kingdom, an analysis of official documents from the Stockholm County Council and an interview study from 1999 with representatives from health care administration and patient organizations. Motives for user involvement/collaboration are improved democracy as well as improved quality by making use of the knowledge and experience of health care users. User involvement may also be a method for legitimizing reductions of resources and prioritizations, a practice which the handicap movement doesn ́t wish to be part of. Despite the extensive Swedish tradition of participation in organizations and interest groups, effective collaboration is hindered by unclear definitions, diffuse goals and unrealistic demands on the organizations ́ representatives. The resulting activity can most often be characterized as “consultation” rather than “collaboration / <p>ISBN 91-7997-130-X</p>

Baggrund og Formål: Studier har vist at cancer patienter,der oplever kvalme under kemoterapibehandling,har en nedsat livskvalitet. Formålet med dette studie har væretat beskrive,hvordan cancerpatienter opleverkemoterapi-induceret kvalme og hvilke copingstrategier, de anvenderfor at håndtere og kontrollere kvalme. Metode:Der blev foretaget en kvalitativ dagborgsundersøgelse med 14 brystcancer patienter i adjuverende kemoterapibehandling på et universitetshospital i Danmark. Kvalitativ indholdsanalyse blev anvendt som analysemetode. Hovedresultat: Gennem analysen fremkom både et manifest og latent indhold,som beskrev patienterneserfaringer med og reflektioner over oplevelsen af kemoterapi-induceret kvalme. Der blev dannet fem kategorier,appetit, lokalisation, karakter, intensitet ogvarighed.Det latente indhold af disse kategorier blev beskrevet i temaet: kvalme er en fysisk oplevelse med komplekse og modstridende fornemmelser.Patienternes copingstrategier identificeredes gennemseks underkategorierog to kategorier. De to kategoriervar: at struktuere hverdagen med kvalme og at ændre fokus. Patienterne anvendte copingstrategier fra begge kategorier for at opnå kontrol over situationen og genoprette et velbefindende. Konklusion: Idette studie beskrivercancer patienterkemoterapi-induceret kvalme som en kompleks fysisk oplevelse, der håndteresved hjælp afen bred vifte af copingstrategier. Patientinddragelse er en mulig strategi i udviklingen afsundhedsfremmende aktiviteter,der kan højnelivskvaliteten hoscancerpatienter, somoplever kvalme i forbindelsen med kemoterapibehandlingen / Background and Aim: Several studies have reported low quality of life among cancer patients with chemotherapy-induced nausea.This study aimed to describe cancer patients’ perception of chemotherapy-induced nausea and the coping strategies used to ease nausea during chemotherapy. Method: Fourteenfemale cancer patients undergoing chemotherapy in a Danish university hospital participated in this study.Data were extracted from diaries, followed byqualitative content analysis. Result: Data analysis comprised both manifest and latent content and revealed the patients’ own experiences of and reflection about perceived chemotherapy-induced nausea.Five categories,appetite, localization, character, intensity, and durationemerged. The latent content of these categories is described by the theme: nausea is a physical experience of complex and contradictory sensations. The results also identified six subcategories and comprised two main categories, which described the women ́s coping strategies: structuring everyday life with nausea and shifting focus. To manage nausea, patients’ employed coping strategies from both categories. Conclusion: This study used patients’ own assessments to understand both the complexity of nausea and the patients’ description of coping with nausea. A strategy involving patient participation might helpto create health promotion activities that increase quality of life among patients with chemotherapy-induced nausea / <p>ISBN 978-91-86739-45-4</p>

Patient-centred care has become an important model for health-care delivery, especially in cancer care. The implementation of this model includes patient-centred communication between the clinician and his or her patient. However, most research on patient-centred communication focuses on the clinicians’ initiative: what clinicians should do and what information they should seek to elicit from patients. It is equally important to recognize what each individual patient can contribute about his or her unique perspective on the disease, its treatment, and the effects on what is important to this patient. This thesis reports the development of a system for analyzing over 1500 utterances made by patients in eight video-recorded oncology consultations at the British Columbia Cancer Agency, Vancouver Island Centre. The analysis distinguishes between biomedical information that the patient can provide and patient-centred information, which contributes the individual patient’s unique perspective on any aspect of his or her illness or treatment. The resulting analysis system includes detailed operational definitions with examples, a decision tree, and .eaf files in ELAN software for viewing and for recording decisions. Two psychometric tests demonstrated that the system is replicable: high inter-analyst reliability (90% agreement between independent analysts) on a random sample of the data set and cross-validation to the remainder of the data set. A supplemental idiographic analysis of each consultation illustrates the important role that patient-centred information played in these consultations. This system could be an important tool for teaching clinicians to recognize the individual information that patients can provide and its relevance to their care. / Graduate / 0992 / 0451 / 0350 / shealing@uvic.ca

Diss. (sammanfattning) Stockholm : Karol. inst., 2003. / Härtill 5 uppsatser.

Disputats, Linköping, 2006. / Med litteraturhenvisninger.

Hepatitis C virus (HCV) infection affects between 150,000 to 300,000 human immunodeficiency (HIV) positive adults in the US (Alter et al., 1999; Sherman, Rouster, Chung, & Rajicic, 2002). The majority of co-infected adults (50%-90%) have acquired HCV through substance abuse (Centers for Disease Control [CDC], 1998; CDC, 2006b). A patient's decision to begin HCV treatment is not straightforward. HCV evaluation and treatment involves a significant amount of time, energy, effort, and compliance on the part of the patient. There is limited information on how adults with HCV mono-infection make decisions about HCV evaluation and treatment (Fraenkel, McGraw, Wongcharatraee, & Garcia-Tsao, 2005). Even less is known about how adults with HIV/HCV co-infection with a history of substance abuse make treatment decisions. The purpose of this study was to describe substance abuse experiences and to explore how these related to patient decision-making about HCV treatment in HIV/HCV co-infected adults. Qualitative descriptive design and secondary data analysis were used to study these phenomena. Data were managed by using NVivo software and analyzed by secondary data analysis and qualitative content analysis. Five major themes with sub-themes emerged during the data analysis. They were: (1) The Evolution of Substance Abuse (with sub-themes: substance abuse initiation, escalation, polysubstance abuse, normalcy: a family of addicts, the enemy within, and transmission and disclosure), (2) Revolving Door: Going Back Out (with sub-themes: specific events as a trigger, emotions as a trigger, alcohol as a trigger, and destructive relationships as a trigger), and (3) Reconstructing Life (with sub-themes: defining moments in substance abuse addiction and maintaining sobriety), (4) HCV Infection Treatment Issues (with sub-themes: HCV treatment: not a priority, fear, and misinformation, and desire to use stimulated during HCV treatment), and (5) Get Clean and Try It. The participants spoke about how their substance abuse evolved from inception to sobriety, and for some it remained a problem. Relapse and recovery were fragile in nature especially in these adults with HIV/HCV co-infection. The decision-making process is influenced by substance abuse experiences, however more research is needed to uncover specific factors influencing these decisions.

A prevalência do Diabetes mellitus tipo 2 (DM2) está em ascensão por todo mundo; no Brasil é considerado um problema de saúde pública. O tratamento visa controle glicêmico e depende prioritariamente de mudanças de hábitos de vida - tratamento não medicamentoso (TNM), podendo associar terapêutica medicamentosa (TM), e requer acompanhamento contínuo de saúde. Esse acompanhamento deve ser realizado prioritariamente nos serviços de Atenção Básica, com suporte de outros pontos da rede de atenção à saúde quando necessário. O presente trabalho tem objetivo de analisar a participação das pessoas com DM2 no processo de cuidado frente acompanhamento em uma Unidade Básica de Saúde (UBS), localizada no município de Ribeirão Preto, SP. Pesquisa quantiqualitativa, norteada pelo referencial teórico do processo de trabalho em saúde, com coleta de dados realizada em duas etapas: a primeira com obtenção de dados a partir das fichas de cadastro do HIPERDIA da UBS Amendoeira em Flor e segunda, realizada junto a pessoas cadastradas no HIPERDIA e com consulta médica agendada, sendo convidadas 64 pessoas, e após a utilização de critérios de exclusão e o consentimento destas, permaneceram 25 pessoas junto com as quais foi realizada coleta de dados por meio de observação não participante de atendimento na UBS e entrevista semiestruturada no domicílio. Para a realização da pesquisa, foram seguidos preceitos éticos. Os dados quantitativos foram submetidos a análise estatística descritiva simples e os dados qualitativos passaram por análise de conteúdo na vertente temática. Os resultados foram apresentados a partir de três temas: 1) Contexto de vida das pessoas com diabetes; 2) Representação do DM2 na vida das pessoas e os cuidados produzidos; 3) Mediação com a rede de atenção à saúde: articulações para a produção de cuidado frente ao DM2. Os entrevistados, pessoas com DM2 cadastradas na UBS Amendoeira em Flor, são em sua maioria mulheres, idosas, com escolaridade até nível fundamental, apresentando comorbidades além do DM2, principalmente relacionadas a complicações cardiovasculares; moram com familiares; e seu contexto de vida, também é marcado pelas condições de cuidado mediante as demandas do trabalho. Constatamos que as características pessoais influenciam nos cuidados dispensados ao DM2 e podem subsidiar a produção deste cuidado. A relação mediada com a condição de adoecimento agrega concepções de saúde-doença-cuidado e influenciam o enfrentamento desta condição, bem como a adesão ao tratamento. Verificamos que essas pessoas utilizam a rede de atenção à saúde, sendo a UBS, a referência para a maioria delas, buscam também serviços ambulatoriais e de urgência e emergência, além disso, articulam recursos privados e utilização de serviços que se caracterizam como informais para a rede de saúde, como forma de qualificar o acompanhamento em saúde. A participação se configura em práticas individualizadas com vistas a qualificar o próprio cuidado, estando ausente a concepção e prática da participação social. Ao longo de todo o trabalho analisa-se que a produção de cuidados ainda é pautada pelo modelo biomédico e com ênfase no TNM. A participação do usuário no processo de cuidado se efetiva alheia à relação com o profissional de saúde e se configura nas escolhas feitas para efetivação do cuidado / The prevalence of Type 2 Diabetes mellitus (DM2) is on the rise around the world; in Brazil is considered a public health problem. Treatment focuses on glycemic control and depends primarily of lifestyle changes - not drug therapy (NDT) and may involve drug therapy (DT), and requires continuous monitoring of health. Such monitoring should be performed priority in the Primary Care services, with support of other parts of the health care network when needed. This study aimed to analyze the participation of people with DM2 in front monitoring care process in a Basic Health Unit (BHU), located in Ribeirão Preto, Brazil. Quanti-qualitative research, guided by the theoretical framework of the health work process, with data collection carried out in two stages: the first with obtaining data from HIPERDIA registration forms of UBS Amendoeira em Flor and second, conducted with people registered in HIPERDIA and scheduled medical appointments, were invited 64 people, and after the use of exclusion criteria and their consent, 25 people remained with which data collection was carried out through not participant observation in the attendance in the UBS and semistructured interview at their home. For the research, ethical guidelines were followed. Quantitative data were submitted to simple descriptive statistics and quali tative data passed by content analysis in the thematic side. The results were presented from three themes: 1) Context of life of people with diabetes; 2) DM2 representation in people\'s lives and produced care; 3) Mediation with the health care network: joints for the production of care face the DM2. The interviewees, people wi th DM2 registered at UBS Amendoreira em Flor, are mostly women, elderly, with schoolari ty up to elementary level, presenting comorbidities beyond DM2, mainly related to cardiovascular complications; live with family; and their life context, it is also marked by the care condi tions with demands of work. We find that the personal characteristics influence the care provided to DM2 and may subsidize the production of this care. Mediated relation to the illness condition adds health-illness care concepts and influence face this condition, as the treatment adherence. We found that these people use the health care network, with the UBS, as reference to most of them, also seek ambulatory and, also, articulate private resources and use of services that are characterized as informal for health network, in order to qualify monitoring in health. Participation is configured in individual practices in order to quali fy the proper care and without a concept and practice of social participation. Throughout the work is concerned that the production of care is still guided by the biomedical model and with emphasis on NDT. User participation in the care process is effective alien to the relationship with the health care professional and is configured in the choices made to provide care