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 Parkinson’s disease:a discrete choice experiment

Background: New disease-modifying ways to treat Parkinson’s 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 respondents’ preferences. Results: A substantial difference in respondents’ preferences was observed in three latent preference patterns (classes). “Effect on symptoms” was the most important attribute in class 1, closely followed by “type of treatment,” 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 “type of treatment” in the decision-making. Respondents’ 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 på sitt yrkesutövande, före och efter legitimering

Ortopedingenjören har rätt till legitimation sedan 1 april 2006. Hur ortopedingenjören upplever denna förändring av yrkets förutsättningar och hur de ser på den egna yrkesprofessionen saknas det i dagsläget kunskap om. Syftet med studien var att identifiera och karakterisera ortopedingenjörens yrkesparadigm, det vill säga ortopedingenjörers syn på sin profession och sitt yrkesutövande. Syftet var vidare att ställa ovanstående 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 innehållsanalys identifierades 19 kategorier som sammanfördes i sex teman. Dessa sex teman som framkom relaterades till Törnebohms paradigmteori: Intresse, Kompetens, Världsbild och Verksamhetssyn. Resultatet visade att respondenterna upplevde att det är viktigt med uppföljning och utvärdering av ortopedtekniska behandlingar, men att det idag saknas möjligheter inom ramen för yrkesprofessionen att utföra detta på grund av tidsbrist. Vidare visade studien att det finns skillnader mellan respondenternas etiska medvetenhet och uppfattning om hur långt det egna ansvaret sträcker sig som legitimerad ortopedingenjör. Slutsatsen blir att det är viktigt att ortopedingenjörerna tar ett personligt ansvar och att verksamheten ta sig tid för uppföljning och utvärdering. Det är också 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 participants’ 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 participants’ 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 people’s 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 participants’ 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 participants’ 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 people’s 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 participants’ 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 participants’ 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 people’s attitudes and preferences need to explicitly engage the complexity of genetic incidental findings

Att leva med en okontrollerbar kropp : En litteraturstudie om mäns upplevelser efter en prostatektomi

Bakgrund: Årligen drabbas mer än 9000 män av prostatacancer i Sverige. Ärftlighet, manligt könshormon och levnadsvanor tycks bidra till sjukdomen. Prostatektomi är en av behandlingsmetoderna. För att kunna ge en god postoperativ omvårdnad till män som genomgår en prostatektomi, är det av vikt att undersöka hur sjukdomen och prostatektomin påverkar dessa män. Syfte: Syftet med denna studie är att belysa mäns 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 sammanställts enligt Friberg´s metod. Resultat: Analysen resulterade i fyra kategorier: "Att förlora kontrollen över urinblåsan", "Att bli impotent", "Behovet av stöd" och "Att få information". Erektil dysfunktion och urinläckage medförde begränsad livskvalitet. Stöd av sin partner och familj var därmed betydelsefullt. Det framkom även att det rådde en missnöjdhet över den givna informationen som gavs av vårdgivarna. Slutsats: Männen drabbades av en mängd postoperativa komplikationer, vilket resulterade i upplevelser av lidande och känslor av skam. Stöd från deras partner var därmed väldigt betydelsefullt. Litteraturstudiens författare tror därför att det är av stor vikt att vårdpersonal erbjuder god omvårdnad även till männens partners, för att de ska må bra trots deras livssituation. För att kunna ge god omvårdad, kan det därför även vara betydelsefullt att undersöka partners upplevelser av att leva med en man som genomgått en prostatektomi. Nyckelord:Radikal prostatektomi, prostatacancer, upplevelser, urininkontinens, impotens

Bäst i klassen: hur gör ledarna? : En studie om hur ledarskapet engagerar medarbetare att delta i förbättringsarbete

“Survival of the fittest” är evolutionsteori som skrevs av Darwin. Även för organisationer är det viktigt att kontinuerligt anpassas och utvecklas för att kunna säkra sin morgondag. Medarbetarnas engagemang är en förutsättning för detta förbättringsarbete. Med hjälp av rätt ledarskap kan medarbetarengagemang uppnås.   Syftet med denna studie var att kartlägga hur ledare i ett antal organisationer skapar engagemang hos medarbetare för att delta i organisationens förbättringsarbete. Genom att utforska ledarskapet i organisationer som fått kvalitetsutmärkelse har denna kvalitativa intervjustudie tagit fram övergripande teman och nyckelord som indikerar ledarens sätt 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 förståelse för organisationen. Ledare behöver även involvera, stötta, ge mandat och ha tillit till medarbetarna. Utöver detta har studien kommit fram till att ledaren behöver främja en förbättringskultur i organisationen. Studiens resultat stämmer väl överens med befintliga teorier om ledares sätt att skapa engagemang hos medarbetare.  En vidare syn på studiens resultat tillsammans med den teoretiska referensramen gav en teori om att medarbetarens engagemang för förbättringsarbete har två grundpelare. Dels behöver medarbetaren känna trygghet men även ha en drivkraft att delta i förbättringsarbetet. Trygghet och drivkraft kan ledaren påverka genom att införliva ett ledarskap som framkommit genom denna studie. Detta kan ses som ett bidrag till samhällsutvecklingen där varje organisation som vill överleva bör se till att dessa faktorer tillämpas. "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

Bäst i klassen: hur gör ledarna? : En studie om hur ledarskapet engagerar medarbetare att delta i förbättringsarbete

“Survival of the fittest” är evolutionsteori som skrevs av Darwin. Även för organisationer är det viktigt att kontinuerligt anpassas och utvecklas för att kunna säkra sin morgondag. Medarbetarnas engagemang är en förutsättning för detta förbättringsarbete. Med hjälp av rätt ledarskap kan medarbetarengagemang uppnås.   Syftet med denna studie var att kartlägga hur ledare i ett antal organisationer skapar engagemang hos medarbetare för att delta i organisationens förbättringsarbete. Genom att utforska ledarskapet i organisationer som fått kvalitetsutmärkelse har denna kvalitativa intervjustudie tagit fram övergripande teman och nyckelord som indikerar ledarens sätt 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 förståelse för organisationen. Ledare behöver även involvera, stötta, ge mandat och ha tillit till medarbetarna. Utöver detta har studien kommit fram till att ledaren behöver främja en förbättringskultur i organisationen. Studiens resultat stämmer väl överens med befintliga teorier om ledares sätt att skapa engagemang hos medarbetare.  En vidare syn på studiens resultat tillsammans med den teoretiska referensramen gav en teori om att medarbetarens engagemang för förbättringsarbete har två grundpelare. Dels behöver medarbetaren känna trygghet men även ha en drivkraft att delta i förbättringsarbetet. Trygghet och drivkraft kan ledaren påverka genom att införliva ett ledarskap som framkommit genom denna studie. Detta kan ses som ett bidrag till samhällsutvecklingen där varje organisation som vill överleva bör se till att dessa faktorer tillämpas. "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