36 research outputs found
AICARE - AI and Automated systems and the Right to Health : Revisiting law accounting for the exploitation of usersâ preferences and values
Mimicking Real-Life Decision Making in Health: Allowing Respondents Time to Think in a Discrete Choice Experiment
Objective: To empirically test the impact of allowing respondents time to think (TTT) about their choice options on the outcomes of a discrete choice experiments (DCE). Methods: In total, 613 participants of the Swedish CArdioPulmonary bioImage Study (SCAPIS) completed a DCE questionnaire that measured their preferences for receiving secondary findings of a genetic test. A Bayesian D-efficient design with 60 choice tasks divided over 4 questionnaires was used. Each choice task contained 2 scenarios with 4 attributes: type of disease, disease penetrance probability, preventive opportunities, and effectiveness of prevention. Respondents were randomly allocated to the TTT or no TTT (NTTT) sample. Latent class models (LCMs) were estimated to determine attribute-level values and their relative importance. In addition, choice certainty, attribute-level interpretation, choice consistency, and potential uptake rates were compared between samples. Results: In the TTT sample, 92% of the respondents (245 of 267) indicated they used the TTT period to (1) read the information they received (72%) and (2) discuss with their family (24%). In both samples, respondents were very certain about their choices. A 3-class LCM was fitted for both samples. Preference reversals were found for 3 of the 4 attributes in one class in the NTTT sample (34% class-membership probability). Relative importance scores of the attributes differed between the 2 samples, and significant scale effects indicating higher choice consistency in TTT sample were found. Conclusions: Offering respondents TTT influences decision making and preferences. Developers of future DCEs regarding complex health-related decisions are advised to consider this approach to enhance the validity of the elicited preferences
Patients accept therapy using embryonic stem cells for Parkinsonâs disease:a discrete choice experiment
Background: New disease-modifying ways to treat Parkinsonâs disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future. Methods: Patients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) available knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondentsâ preferences. Results: A substantial difference in respondentsâ preferences was observed in three latent preference patterns (classes). âEffect on symptomsâ was the most important attribute in class 1, closely followed by âtype of treatment,â with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on âtype of treatmentâ in the decision-making. Respondentsâ class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs. Conclusions: Most of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells.</p
Ortopedingenjörens yrkesparadigm : synen pÄ sitt yrkesutövande, före och efter legitimering
Ortopedingenjören har rÀtt till legitimation sedan 1 april 2006. Hur ortopedingenjören upplever denna förÀndring av yrkets förutsÀttningar och hur de ser pÄ den egna yrkesprofessionen saknas det i dagslÀget kunskap om. Syftet med studien var att identifiera och karakterisera ortopedingenjörens yrkesparadigm, det vill sÀga ortopedingenjörers syn pÄ sin profession och sitt yrkesutövande. Syftet var vidare att stÀlla ovanstÄende begrepp i relation till före och efter legitimering. Denna studie utfördes med en kvalitativ metod. Fyra fokusgrupper som bestod av fyra till sex legitimerade ortopedingenjörer i varje grupp intervjuades med Nominalgruppteknik (NGT). Genom kvalitativ innehÄllsanalys identifierades 19 kategorier som sammanfördes i sex teman. Dessa sex teman som framkom relaterades till Törnebohms paradigmteori: Intresse, Kompetens, VÀrldsbild och Verksamhetssyn. Resultatet visade att respondenterna upplevde att det Àr viktigt med uppföljning och utvÀrdering av ortopedtekniska behandlingar, men att det idag saknas möjligheter inom ramen för yrkesprofessionen att utföra detta pÄ grund av tidsbrist. Vidare visade studien att det finns skillnader mellan respondenternas etiska medvetenhet och uppfattning om hur lÄngt det egna ansvaret strÀcker sig som legitimerad ortopedingenjör. Slutsatsen blir att det Àr viktigt att ortopedingenjörerna tar ett personligt ansvar och att verksamheten ta sig tid för uppföljning och utvÀrdering. Det Àr ocksÄ viktigt att de etiska reglerna klargörs
INDIVIDUAL GENETIC RESEARCH RESULTS : Uncertainties, Conceptions, and Preferences
This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question. The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participantsâ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participantsâ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information. As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of peopleâs attitudes and preferences need to explicitly engage the complexity of genetic incidental findings
INDIVIDUAL GENETIC RESEARCH RESULTS : Uncertainties, Conceptions, and Preferences
This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question. The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participantsâ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participantsâ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information. As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of peopleâs attitudes and preferences need to explicitly engage the complexity of genetic incidental findings
INDIVIDUAL GENETIC RESEARCH RESULTS : Uncertainties, Conceptions, and Preferences
This thesis contributes to the ethical discussion on how to handle incidental findings in biomedical research using sequencing technologies from a theoretical and an empirical perspective. Study I and II are theoretical studies that used conceptual analysis. Study I demonstrates that the argument for disclosure based on the principle of beneficence ignores the complexity and uncertain predictive value of genetic risk information. The argument neglects the distinction between an incidentally discovered disease and an incidentally discovered risk for disease with unclear predictive value. Study II investigates the proposal to let participants express their preferences to incidental genetic findings in the consent form. The study argues that this freedom of choice is problematic because it is uncertain whether the opportunity to choose in the consent phase enables people to express what they truly prefer. Participants might be steered to a specific answer depending on mood, triggered feelings, and the framing of the question. The second part of the thesis is empirical and used both a qualitative and a quantitative approach. Study III investigates research participantsâ understanding of genetic risk and used a phenomenographic approach and focus group interviews. One result was that participants understood genetic risk in binary terms. This understanding involved an either/or concept of genetic risk. Participants tend not to understand genetic risk as a probability. They also interpreted the information in terms of their past, present, and future life. Study IV used a questionnaire with a stated preference technique called Discrete Choice Experiments (DCE) to investigate participantsâ preferences for genetic risk information. An effective preventive measure was the most important characteristic for research participants in their decision to be given genetic risk information. When the disease was life threatening, had a high penetrance probability, and had effective preventive measures, 98% of the participants wanted to know their incidental genetic risk information. As genetic risk information has many different characteristics and includes many uncertainties, ethical discussions and empirical studies of peopleâs attitudes and preferences need to explicitly engage the complexity of genetic incidental findings
Att leva med en okontrollerbar kropp : En litteraturstudie om mÀns upplevelser efter en prostatektomi
Bakgrund: Ă
rligen drabbas mer Ă€n 9000 mĂ€n av prostatacancer i Sverige. Ărftlighet, manligt könshormon och levnadsvanor tycks bidra till sjukdomen. Prostatektomi Ă€r en av behandlingsmetoderna. För att kunna ge en god postoperativ omvĂ„rdnad till mĂ€n som genomgĂ„r en prostatektomi, Ă€r det av vikt att undersöka hur sjukdomen och prostatektomin pĂ„verkar dessa mĂ€n. Syfte: Syftet med denna studie Ă€r att belysa mĂ€ns upplevelser efter en prostatektomi. Metod: En litteraturstudie har genomförts. Vetenskapliga artiklar med kvalitativ ansats söktes i databaserna CINAHL, PubMed och Scopus. Tio artiklar uppfyllde kvalitetskriterierna och inkluderades. Artiklarnas resultat har analyserats och sammanstĂ€llts enligt FribergÂŽs metod. Resultat: Analysen resulterade i fyra kategorier: "Att förlora kontrollen över urinblĂ„san", "Att bli impotent", "Behovet av stöd" och "Att fĂ„ information". Erektil dysfunktion och urinlĂ€ckage medförde begrĂ€nsad livskvalitet. Stöd av sin partner och familj var dĂ€rmed betydelsefullt. Det framkom Ă€ven att det rĂ„dde en missnöjdhet över den givna informationen som gavs av vĂ„rdgivarna. Slutsats: MĂ€nnen drabbades av en mĂ€ngd postoperativa komplikationer, vilket resulterade i upplevelser av lidande och kĂ€nslor av skam. Stöd frĂ„n deras partner var dĂ€rmed vĂ€ldigt betydelsefullt. Litteraturstudiens författare tror dĂ€rför att det Ă€r av stor vikt att vĂ„rdpersonal erbjuder god omvĂ„rdnad Ă€ven till mĂ€nnens partners, för att de ska mĂ„ bra trots deras livssituation. För att kunna ge god omvĂ„rdad, kan det dĂ€rför Ă€ven vara betydelsefullt att undersöka partners upplevelser av att leva med en man som genomgĂ„tt en prostatektomi. Nyckelord:Radikal prostatektomi, prostatacancer, upplevelser, urininkontinens, impotens
BÀst i klassen: hur gör ledarna? : En studie om hur ledarskapet engagerar medarbetare att delta i förbÀttringsarbete
âSurvival of the fittestâ Ă€r evolutionsteori som skrevs av Darwin. Ăven för organisationer Ă€r det viktigt att kontinuerligt anpassas och utvecklas för att kunna sĂ€kra sin morgondag. Medarbetarnas engagemang Ă€r en förutsĂ€ttning för detta förbĂ€ttringsarbete. Med hjĂ€lp av rĂ€tt ledarskap kan medarbetarengagemang uppnĂ„s.  Syftet med denna studie var att kartlĂ€gga hur ledare i ett antal organisationer skapar engagemang hos medarbetare för att delta i organisationens förbĂ€ttringsarbete. Genom att utforska ledarskapet i organisationer som fĂ„tt kvalitetsutmĂ€rkelse har denna kvalitativa intervjustudie tagit fram övergripande teman och nyckelord som indikerar ledarens sĂ€tt att skapa engagemang hos medarbetare. Det som framkom i studien var att ledaren behöver vara öppen, lyhörd och tydlig. Vidare behöver ledaren arbeta med uppföljning och uppmuntra medarbetare att ha en bred förstĂ„else för organisationen. Ledare behöver Ă€ven involvera, stötta, ge mandat och ha tillit till medarbetarna. Utöver detta har studien kommit fram till att ledaren behöver frĂ€mja en förbĂ€ttringskultur i organisationen. Studiens resultat stĂ€mmer vĂ€l överens med befintliga teorier om ledares sĂ€tt att skapa engagemang hos medarbetare. En vidare syn pĂ„ studiens resultat tillsammans med den teoretiska referensramen gav en teori om att medarbetarens engagemang för förbĂ€ttringsarbete har tvĂ„ grundpelare. Dels behöver medarbetaren kĂ€nna trygghet men Ă€ven ha en drivkraft att delta i förbĂ€ttringsarbetet. Trygghet och drivkraft kan ledaren pĂ„verka genom att införliva ett ledarskap som framkommit genom denna studie. Detta kan ses som ett bidrag till samhĂ€llsutvecklingen dĂ€r varje organisation som vill överleva bör se till att dessa faktorer tillĂ€mpas. "Survival of the fittest" is an evolutionary theory written by Darwin. It is also important for organizations to ensure their future by continuously adapting and developing. The engagement of the employees' is a prerequisite for continuous improvements within organizations. With the right leadership, employee engagement can be achieved.  The purpose of this study was to map how leaders in a number of organizations create engagement among employees to participate in the organization's continuous improvements. By exploring leadership in organizations that have received quality awards, this qualitative interview study has identified overarching themes and keywords that indicate how leaders create employee engagement.  What emerged in the study was that the leader needs to be open, responsive and clear. Furthermore, the leader needs to work with follow-up and encourage employees to have a broad understanding of the organization. Leaders also need to involve, support, give mandate and have trust in employees. In addition to this, the study has concluded that the leader needs to promote a culture of continuous improvement in the organization. The results of the study are in good agreement with existing theories about leaders' ways of creating employee engagement.  The results of the study together with the theoretical frameworks resulted in a theory which consists of two pillars of the employee's commitment to continuous improvements. On the one hand, the employee needs to feel secure in their environment, but also have a driving force to participate in the improvement work. Security and drive can be influenced by the leader by incorporating a leadership that has emerged through this study. This can be seen as a contribution to the development of a society where every organization that wants to survive should ensure that these factors are applied2022-06-05</p
BÀst i klassen: hur gör ledarna? : En studie om hur ledarskapet engagerar medarbetare att delta i förbÀttringsarbete
âSurvival of the fittestâ Ă€r evolutionsteori som skrevs av Darwin. Ăven för organisationer Ă€r det viktigt att kontinuerligt anpassas och utvecklas för att kunna sĂ€kra sin morgondag. Medarbetarnas engagemang Ă€r en förutsĂ€ttning för detta förbĂ€ttringsarbete. Med hjĂ€lp av rĂ€tt ledarskap kan medarbetarengagemang uppnĂ„s.  Syftet med denna studie var att kartlĂ€gga hur ledare i ett antal organisationer skapar engagemang hos medarbetare för att delta i organisationens förbĂ€ttringsarbete. Genom att utforska ledarskapet i organisationer som fĂ„tt kvalitetsutmĂ€rkelse har denna kvalitativa intervjustudie tagit fram övergripande teman och nyckelord som indikerar ledarens sĂ€tt att skapa engagemang hos medarbetare. Det som framkom i studien var att ledaren behöver vara öppen, lyhörd och tydlig. Vidare behöver ledaren arbeta med uppföljning och uppmuntra medarbetare att ha en bred förstĂ„else för organisationen. Ledare behöver Ă€ven involvera, stötta, ge mandat och ha tillit till medarbetarna. Utöver detta har studien kommit fram till att ledaren behöver frĂ€mja en förbĂ€ttringskultur i organisationen. Studiens resultat stĂ€mmer vĂ€l överens med befintliga teorier om ledares sĂ€tt att skapa engagemang hos medarbetare. En vidare syn pĂ„ studiens resultat tillsammans med den teoretiska referensramen gav en teori om att medarbetarens engagemang för förbĂ€ttringsarbete har tvĂ„ grundpelare. Dels behöver medarbetaren kĂ€nna trygghet men Ă€ven ha en drivkraft att delta i förbĂ€ttringsarbetet. Trygghet och drivkraft kan ledaren pĂ„verka genom att införliva ett ledarskap som framkommit genom denna studie. Detta kan ses som ett bidrag till samhĂ€llsutvecklingen dĂ€r varje organisation som vill överleva bör se till att dessa faktorer tillĂ€mpas. "Survival of the fittest" is an evolutionary theory written by Darwin. It is also important for organizations to ensure their future by continuously adapting and developing. The engagement of the employees' is a prerequisite for continuous improvements within organizations. With the right leadership, employee engagement can be achieved.  The purpose of this study was to map how leaders in a number of organizations create engagement among employees to participate in the organization's continuous improvements. By exploring leadership in organizations that have received quality awards, this qualitative interview study has identified overarching themes and keywords that indicate how leaders create employee engagement.  What emerged in the study was that the leader needs to be open, responsive and clear. Furthermore, the leader needs to work with follow-up and encourage employees to have a broad understanding of the organization. Leaders also need to involve, support, give mandate and have trust in employees. In addition to this, the study has concluded that the leader needs to promote a culture of continuous improvement in the organization. The results of the study are in good agreement with existing theories about leaders' ways of creating employee engagement.  The results of the study together with the theoretical frameworks resulted in a theory which consists of two pillars of the employee's commitment to continuous improvements. On the one hand, the employee needs to feel secure in their environment, but also have a driving force to participate in the improvement work. Security and drive can be influenced by the leader by incorporating a leadership that has emerged through this study. This can be seen as a contribution to the development of a society where every organization that wants to survive should ensure that these factors are applied2022-06-05</p