| 1. |
- Broqvist, Mari, 1958-
(författare)
-
Asking the public : Citizens´ views on priority setting and resource allocation in democratically governed healthcare
- 2018
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.
|
|
| 2. |
- Fagerlind Ståhl, Anna-Carin, 1982-
(författare)
-
Live long and prosper : Health-promoting conditions at work
- 2015
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis is to contribute with knowledge concerning health-promoting conditions at work, and to investigate how individual, workplace and organisational conditions are interrelated. In the thesis, work-related flow, i.e. an experience of motivation, absorption and work enjoyment, is used as a holistic notion of occupational health. In Paper I, work-related flow is investigated in relation to decision latitude, social capital and an innovative learning climate at work. Paper II investigates whether the use of tools inspired by lean production, such as standardisation and value stream mapping, is positively associated with conditions for innovative learning in organisations. The aim of Paper III is to identify conditions for health and performance in organisation and at work; further, to investigate the association between work-related flow and performance. Paper IV reports on a longitudinal investigation of workrelated flow in relation to lean tool use and conditions at the workplace. The empirical material is based on data from 10 organisations, including 4442 employees. Papers I-III are cross-sectional, whereas Paper IV is longitudinal. Papers II-IV utilise multilevel analyses.The results show that decision latitude, social capital and an innovative learning climate are associated with an increase in work-related flow (Papers I, III & IV), and with performance (Paper III). Individuals’ decision latitude enables an increased benefit from the social capital and innovative learning climate at work (Paper I). The effect of tools inspired by lean production on work-related flow (Papers III & IV), and on conditions for innovative learning (Paper II) differs, depending on which tools are used, and on workplace conditions. These tools enable innovative learning mainly where decision latitude is low (Paper II), and it is primarily the lean tool value stream mapping which has the potential to create an arena for innovative learning (Paper II) and work-related flow (Paper IV).It is concluded that the individual is embedded in a social work context that has the potential to strengthen the ability to act with motivation, absorption and enjoyment. In order to utilise collective healthpromoting conditions at work, individuals need to have authority to make their own decisions and use their skills. The effect of tools inspired by lean production depends on the specific tools that are used, and on individuals’ decision latitude at work. Their potential to enable innovative learning is most evident for employees who have few opportunities for autonomous decision-making and skill use in their work. For those with a high degree of decision latitude, the use of lean tools has a smaller effect. Work-related flow may in itself serve as a resource that improves performance and increases engagement in health-promoting work conditions. In order to promote health as well as performance, work needsto be organised so that employees have opportunities to decide over their own work, and utilise their skills, individually and collectively within the workgroup.
|
|
| 3. |
- Zarenoe, Reza, 1969-
(författare)
-
Tinnitus in Patients with Sensorineural Hearing Loss : Management, Quality of Life and Treatment Strategies
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Approximately 15% of Swedish people experience tinnitus, but only 2.4% experience severe problems. Treatment modalities for tinnitus vary, but the most common treatment is counseling. The majority of patients with tinnitus report some degree of hearing loss, and hearing aids have been used for many years in patients who suffer from both tinnitus and hearing impairment. The aim of the present thesis was to investigate disease management, determine quality of life and identify treatment strategies for patients with tinnitus and sensorineural hearing loss.The first two studies described here are retrospective, descriptive studies of patients who sought care for tinnitus and hearing loss at two Ear-Nose-Throat (ENT) clinics in Östergötland County, Sweden, during the years 2004 - 2007. Study I showed that 70% of the cohort had tinnitus; however, many did not initially receive a diagnosis of tinnitus. Information about vertigo, heredity for hearing loss and tinnitus, diabetes history, cardiovascular disease history and other factors related to health was often missing from the patients’ medical records. The results could show that the overall scores using the Tinnitus Handicap Inventory (THI) were higher in female patients than in male patients. Although it is likely that hearing aids would be beneficial for the majority of these patients, 314 (44%) of the 714 total patients had hearing aids. Furthermore, the outcomes from study II demonstrated that a majority of the patients (61%) who were dissatisfied with the care they had obtained had no hearing aids. This finding may indicate that the fitting of hearing aids is an important treatment for patients with both tinnitus and hearing loss.Studies III and IV were prospective studies. Data collection was based on patients who sought care for tinnitus and/or hearing loss at the ENT clinic in Linköping during 2012-2013. In study III, 92 patients were divided into two groups: one group contained individuals with both tinnitus and hearing loss, and the other group contained patients with only hearing loss. The patients were assessed using the Reading Span test, the Hearing in Noise Test (HINT) and three questionnaires (the THI, the Hearing Handicap Inventory for Elderly and the Pittsburg Sleep Quality Index) at baseline and follow-up. The results from the age-matched subgroups (n=30+30) generated from the full clinical groups (46+46) showed significantly improved Reading Span test performance and sleep quality in patients with both tinnitus and hearing loss. Similar results were observed in our full clinical population (n=46+46). However, the interpretation of this finding is difficult due to age differences between the groups. In conclusion, hearing aid fitting had a significantly positive impact on working memory capacity and sleep quality in patients with both tinnitus and hearing loss compared with patients with only hearing loss.In study IV, a brief Motivational Interviewing (MI) guide was integrated into the hearing rehabilitation process for 23 patients with both tinnitus and hearing loss, and they were compared against a control group (n=23) of patients with both tinnitus and hearing loss who underwent traditional hearing rehabilitation. The results showed that the patients who received the brief MI guide required fewer visits to complete their hearing rehabilitation compared with the patients in the control group. In addition, there was a significant difference in THI scores between the groups, which indicated that the intervention reduced tinnitus annoyance more in the MI group. Furthermore, both groups showed higher scores at follow-up compared with baseline on the International Outcome Inventory for Hearing Aids (IOI-HA) scale, which indicated that both approaches showed a positive effect on hearing aid satisfaction.Study V was a retrospective, descriptive study that focused on a part of a Stepped Care model and included patients who participated in half-day tinnitus information meetings from 2004 to 2011 in the audiology clinic at Linköping University Hospital. A total of 426 tinnitus patients with complete questionnaires (the THI and the Hospital Anxiety and Depression Scale, HADS) were included in the study. The results showed significant decreases in scores on the THI and the anxiety module of the HADS before and after the information session. However, there were no statistically significant changes in the depression module of the HADS.In conclusion, this thesis underscores the importance of hearing impairment, cognitive variables and motivational procedures in the management of tinnitus. Multidisciplinary group information needs to be further validated.
|
|
| 4. |
- Fredlund, Cecilia, 1984-
(författare)
-
Adolescents Selling Sex and Sex as Self-Injury
- 2019
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- There are today only a few population-based studies in the world investigating the prevalence of and associated risk-factors with adolescents selling sex and so far no earlier population-based study has been found investigating adolescents motives for selling sex. Further, to use sex in means of self-injury (SASI) is a behaviour that has been highlighted in Sweden the last years but it is a new field of research and a behaviour in need of conceptualization.The aim of this thesis was to investigate the prevalence of, associated risk factors with, motives for and manifestations of adolescents selling sex and the use of sex as self-injury (SASI). For the thesis, two nationally representative cross-sectional population surveys with third year students at Swedish high schools were collected in 2009 (n = 3498, mean age 18.3 +/- 0.6 years, response rate 60.4%) and in 2014 (n = 5839, mean age 18.0 +/- 0.6 years, response rate 59.7%). Further, the motives and manifestations of SASI were investigated in an anonymous self-selected, open-ended questionnaire published on websites of non-governmental organizations offering help and support to women and adolescents (n = 199, mean age 27.9 +/- 9.3 years). Quantitative and qualitative methods were used for data analyses.In the 2009 population-based survey, 1.5% (n = 51) of the adolescents reported having sold sex on at least one occasion, but in 2014 the prevalence was slightly lower at 0.9% (n = 51). SASI was reported by 3.2% of girls (n = 100) and 0.8% of boys (n = 20). Both selling sex and SASI were associated with various adverse factors such as experience of sexual abuse, emotional and physical abuse, poor mental health and self-injury. Adolescents selling sex had sought help and support for different problems and worries to a greater extent compared to peers. Contact with healthcare for various psychiatric problems such as suicide attempts, depression and eating disorders was common for adolescents using SASI. Further analysis showed that adolescents selling sex are a heterogeneous group in regard to underlying motives for selling sex, which included emotional and material reasons as well as pleasure. Depending on their underlying motives, adolescents selling sex were found to differ in regard to compensation received, age of the buyer, means of contact with the buyer, sexual orientation, experience of sexual abuse and the use of SASI. By using data from an open-ended questionnaire, SASI was described as deliberate or self-inflicted sexual situations that could include psychological and physical harm. SASI was used as a way to regulate negative feelings, such as anxiety, or to get positive or negative confirmation and the behaviour could be hard to stop.In conclusion, selling sex and SASI occurs among Swedish adolescents and the behaviours are associated with sexual, physical and emotional abuse and poor mental health, including trauma symptoms. In regard of the motives and manifestations of SASI, the behaviour could be compared to direct self-injurious behaviours. Data from this thesis suggest that more attention should be paid in healthcare to recognizing adolescents selling sex and SASI in order to prevent further traumatization and victimization.
|
|
| 5. |
- Ingadóttir, Brynja
(författare)
-
Learning as a patient : What and how individuals want to learn when preparing for surgery, and the potential use of serious games in their education
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Surgical patients need knowledge to participate in their own care and to engage in self-care behaviour in the perioperative period which is important for their recovery. Patient education facilitates such knowledge acquisition and several methods can be used to facilitate it, for example, face-to-face education and brochures or using information technology such as website or computer games. Healthcare professionals have been slow to seize the possibilities that information technology has to offer within the field, including the use of serious games. To optimise patient education, the information is needed on the patients’ needs and preferences and what they think about the idea of using a serious game to learn about self-care.Aim: The overall aims of this thesis were to describe the knowledge expectations of surgical patients, to describe how surgical patients want to learn, and to explore the potential use of serious games in patient education.Methods: This thesis includes four studies that used both quantitative and qualitative data to describe aspects of patient learning in relation to surgery. Study I has a prospective and comparative design with survey data collected before surgery and before hospital discharge from 290 patients with osteoarthritis undergoing knee arthroplasty. Data was collected on fulfilment of knowledge expectations and related factors. Study II is a cross-‐sectional study in 104 patients with heart failure who had been scheduled for cardiac resynchronisation therapy (CRT) device implantation. Data was collected on knowledge expectations and related factors. In Study III the perceptions of 13 surgical patients towards novel and traditional methods to learn about post-operative pain management are explored in a qualitative interview study using content analysis. Study IV describes the development and evaluation of a serious game to learn about pain management with the participation of 20 persons recruited from the public. The game was developed by an interdisciplinary team following a structured approach. Data on the efficacy and usability of the game was collected in one session with questionnaires, observations and interviews.Results: Participants reported high knowledge expectations. Knowledge expectations were highest within the bio-physiological knowledge dimension on disease, treatment and complications and the functional dimension on how daily activities are affected, both of which include items on self-care. Most participants wanted to know about the possible complications related to the surgery procedure. In none of the knowledge dimensions the expectations of participants were fulfilled. Participants received most knowledge on the physical and functional issues and received least on the financial and social aspects of their illness. The main predictor of fulfilment of knowledge expectations was having access to knowledge in the hospital from doctors and nurses. Trust in the information source and own motivation to learn shaped how the participants thought about different learning methods. Although the participants were open to using novel learning methods such as websites or games they were also doubtful about their use and called for advice by healthcare professionals. To develop a serious game with the goal to learn about pain management, theories of self-care and adult learning, evidence on the educational needs of patients about pain management and principles of gamification were found useful. The game character is a surgical patient just discharged home from hospital who needs to attend to daily activities while simultaneously managing post-operative pain with different strategies. Participants who evaluated a first version of the serious game improved their knowledge and described usability of the game as high. They were positive towards this new learning method and found it suitable for learning about pain management after surgery in spite of some technical obstacles.Conclusions: Surgical patients have high knowledge expectations about all aspects of their upcoming surgery and although they prefer direct communication with healthcare professionals as a source for knowledge they might be open to try using more novel methods such as games. Preliminary short-‐term results demonstrate that a serious game can help individuals to learn about pain management, and has the potential to improve knowledge. A careful introduction, recommendation, and support from healthcare professionals is needed for implementation of such a novel method in patient education.
|
|
| 6. |
- Johansson Capusan, Andrea, 1970-
(författare)
-
Environmental and Genetic Influences in Attention Deficit Hyperactivity Disorder (ADHD) and its Comorbidities
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Research in past decades has demonstrated the persistence of attention deficit hyperactivity disorder (ADHD) into adulthood, but many questions regarding prevalence, causes, and comorbidities of ADHD in adults remain to be investigated. Previous research focusing on childhood ADHD identified high heritability. Genetic and environmental influences on ADHD symptoms in adults and their association with comorbid conditions are not fully understood.The overall aim of this thesis was to study adult ADHD symptoms in the population and investigate associations with substance use disorders (SUD) and binge eating. In all four papers, we used population-based self-report data from twins aged 20–46 years from the Swedish Twin Registry. We used twin methods to explore the role of genetic and environmental factors underlying ADHD symptoms and their comorbidities.Study I examined the phenotypic association between ADHD and various forms of SUD. ADHD in adults was strongly associated with alcohol abuse and alcohol dependence, illicit drug use and regular nicotine use, with no differences between ADHD subtypes and no apparent substance preference. In Studies II and IV, we used bivariate twin models to examine the role of genetic and environmental factors in the association of adult ADHD symptoms with alcohol dependence (II) and with binge eating (IV). For ADHD symptoms and alcohol dependence, 64% of the overlap was explained by common genetic factors. The remaining variance was accounted for by environmental factors specific for each twin, with no sex differences for the overlap. Similarly, 91% of the association between ADHD symptoms and binge-eating behaviour was explained by common genetic factors. In Study III, using a within-twin pair analysis, we demonstrated that although most of the association between adult ADHD symptoms and self-reported childhood maltreatment (an environmental risk factor for ADHD) was explained by familial (genetic and environmental) confounding, our results were also consistent with a causal interpretation.In conclusion, adult ADHD symptoms are associated with SUD and binge-eating behaviour. We replicated findings from adolescent studies regarding shared genetic risk factors for alcohol dependence and ADHD symptoms in adults. For binge eating, we showed for the first time that shared genetic factors mainly explained the association with ADHD symptoms. Alterations in mesolimbic reward processing as well as the frontal, executive and inhibitory systems have been described for ADHD, alcohol dependence and binge-eating behaviour, possibly suggesting common genetic and neurobiological factors for all three conditions. Results that support a causal hypothesis regarding the association between childhood maltreatment and ADHD symptoms in adults need follow-up in longitudinal clinical samples that can examine neurobiological underpinnings of environmental effects. Clinically, the results of this thesis support that ADHD in adults be considered and addressed in adults with SUD or binge-eating behaviour. Given the common genetic risk factors and the role of the early childhood environment, family interventions should be considered for these populations.
|
|
| 7. |
- Jonsson, Linda S., 1975-
(författare)
-
Online Sexual Behaviours Among Swedish Youth : Characteristics, Associations and Consequences
- 2015
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Online sexual behaviours refer to sexual activities where the Internet and/or mobile phone are used. The aims of this thesis were to investigate young people and their experiences of different online sexual behaviours with regard to characteristics, associations and consequences, by using data from a representative sample of 3,503 Swedish youth (m= 18.3 years). In addition 16 interviews were made with young women who had sold sex online before the age of 18. Focus in these interviews were in which ways contacts between buyer and seller were established and the motivational factors for selling sex online.In study I (n= 3,288), 20.9% (19.2% boys and 22.3% girls) reported experiences of voluntary online sexual exposure: flashing in webcam/mobile; posted partially undressed pictures or films; masturbated on webcam; had sex on webcam. Multivariate analysis showed a significant association between voluntary online sexual exposure and a number of different forms of harassments online. Neither poorer psychological health nor problematic relations with parents remained significant in the final model predicting voluntary online sexual exposure. In study II (n= 3,432) four online sexual behaviours were studied: meeting a person online for sex online; meeting a person online for sex offline; posted sexual pictures online; selling sex online. These were investigated in relation to socio-demographic factors, psychosocial wellbeing and risk behaviours. Bivariate logistic regressions were followed by multiple logistic regressions. The data suggested that most Swedish youth do not perform any of the assessed online sexual behaviours, but those who did (15.2%) reported a more problematic background, rated their health as poorer, had a more sexualised life and had experienced more sexual or physical abuse. This was especially prevalent among those who had sold sex online. In study III, young women with experiences of selling sex online before the age of 18 were interviewed. The interviews focused on the role Internet and mobile phone play and the methods of contacts and characteristics of the communication between buyer and seller. Two main themes were identified: Internet use - part of daily life for good and bad, depending on mood; Patterns of contacts - innocent/curious, dating, advertising. In the fourth study the interviews with the young women who had sold sex online before the age of 18 were analysed focusing on the women’s perceptions of the reasons why they started, continued and stopped selling sex. Three themes and eight sub-themes were identified in relation to different stages in their lives in the sex trade, each with its own storyline: Entering, adverse life experiences - traumatic events, feeling different and being excluded; Immersion, using the body as a regulating tool - being seen, being touched, being in control, affect regulation and self-harming; Exiting, change or die - living close to death, the process of quitting.In conclusion, the results from this thesis showed that most young people use Internet and mobile phones for non-sexual activities. Sexual behaviours online were associated with a more problematic background and poorer wellbeing. More research, attention and support are needed, especially related to young people selling sex online.
|
|
| 8. |
- Lindh Falk, Annika, 1967-
(författare)
-
Interprofessional Collaboration in Health Care : Education and Practice
- 2016
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Interprofessional collaboration is of global interest for addressing to the complex health care needs and improving patient safety in health care. Professionals have to develop collaborative skills and the ability to share knowledge. Interprofessional education describes learning activities where students learn with, from and about each other to improve collaboration. The dimension of interprofessional collaboration is complex and includes different collaborative competencies to bring about the best for the patients. To become a professional, often understood as someone exerting expertise within a specific field of practice, involves a learning process that challenges the boundaries of the professions. Boundaries are not only barriers, but also places that increase learning. There is a complexity to studying the phenomenon of interprofessional collaboration and learning regarding how it occurs in education and health care practice. By using a sociomaterial perspective on practice, it is possible to more robustly explore the collaborative context.Aim: The overarching aim of the thesis has been to explore interprofessional collaboration and learning in health care education and in interprofessional health care practice. More specifically, the research questions in the thesis were answered in two studies regarding how professional knowledge is developed and shared in interprofessional undergraduate health care education and in interprofessional health care practice.Methods: A questionnaire was distributed to students from a medicine, nursing, physiotherapy and occupational therapy programme who participated in a two-week period of practice at an Interprofessional Training Ward in Linköping. The data was analysed quantitatively to explore how female and male students experienced their professional identity formation. The open-ended responses were analysed using a sociomaterial perspective on practice.An ethnographic study was conducted in a hospital setting during a period of one year, during which two interprofessional teams were observed. A theory-driven analysis was made using a sociomaterial perspective on practice, and this provided a lens through which the nature of interprofessional collaboration and knowledge sharing could be observed.Findings: The main findings from the questionnaire showed that the practice architectures of the Interprofessional Training Ward, prefigured practices where different professional responsibilities were enacted in ways that were reproducing expected and unexpected roles in a traditional health care practice. That disrupted the students´ practical and general understandings of professional responsibilities and the nature of professional work including their professional identity formation.The findings from the ethnographic study showed different patterns of how knowledge was shared among professionals in their daily work practice as it unfolded, like chains of actions. The patterns arose through activities where collaboration between professionals was planned beforehand, and at other times it arose in more spontaneous or responsive ways. Due to the way the activities were arranged, the nursing assistants were totally or partially excluded from the collaborative practices.Conclusions: The way that educational and health care practices were arranged had an influence on the patterns of interactions between the students as well as the professionals. The arrangement at the Interprofessional Training Ward enabled and constrained the possibilities for students to learn professional and interprofessional competencies. Professional practices in health care hung together through chains of actions that influenced interprofessional collaboration and learning. The relations between human actors, material objects and artifacts are of importance for understanding interprofessional practices.
|
|
| 9. |
- Thörne, Karin, 1957-
(författare)
-
Läkare, lärande och interaktion i hälso-och sjukvårdspraktiker
- 2018
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Bakgrund: Komplexiteten i hälso- och sjukvården blir kontinuerligt större, liksom möjligheterna till diagnostik och behandling. Samtidigt pressas hälso- och sjukvården av förändringar i demografier och sjukdomspanoraman, olika uttryck för globalisering och tillämpning av nya teknologier. Ett omfattande antal olika professioner förväntas genomföra och utveckla det dagliga arbetet med ännu mer involvering av patienter. Vi behöver mer kunskap om hur lärande sker och hur det underlättas och utvecklas i dagligt hälso- och sjukvårdsarbete för att kunna möta förändringar och utmaningar. Syfte: Avhandlingens övergripande syfte är att fördjupa kunskap och förståelse om pedagogiska processer och lärande i hälso- och sjukvårdspraktiker, med särskilt fokus på läkare. Metoder: Intervjustudier och fältstudie med interaktiv forskningsansats gav data med både bredd och djup från autentiskt hälso- och sjukvårdsarbete. I pågående hälso- och sjukvårdsarbete studerades läkare, vårdgivare i andra professioner, patienter, redskap som användes och praktikens rumsliga utformning. Data analyserades genom både kulturella och sociomateriella praktikteoretiska linser, vilket möjliggjorde att flera dimensioner av lärande och interaktion i hälso- och sjukvårdspraktiker kunde spåras. Fynd: I arbetet med patienter agerade läkare och andra professioner pedagogiskt med eller utan intentioner, i pedagogiska processer som bestod av att avläsa-färdrikta-lärstödja. Den pedagogiska dimensionen av arbetet var inte synliggjord eller diskuterad i relation till patientarbetet. Dynamiskt inbäddat i arbetet lärde och stöttade läkare också yngre läkares och andra vårdgivares lärande. Läkarnas mobilitet i olika vårdsammanhang, såväl som ansvarsfördelning och delande av olika perspektiv, hade betydelse för vilket lärande som uppstod. Genom att betrakta specifika vårdsammanhang som hälso- och sjukvårdspraktiker under utövning, framträdde vid studiet av en rondmodell både samskapande lärande ronder och operativa ronder med begränsat lärande. Det framträdde genom sättet som deltagande personer, rumsliga och materiella förhållande samspelade på, som ömsesidigt utbyte respektive separata individuella arbetsprocesser. Samspelet mellan hälso- och sjukvårdspraktikers arrangemang (praktikarkitekturer) och genomförande snarare begränsade än underlättade underläkares lärandepraktiker. Underläkarnas arbete hade inte kontinuitet, koherens eller progression för att bredden av kunnande i medicinsk praktiskt arbete skulle kunna utvecklas bra. Implikationer: Att förstå och synliggöra lärande i hälso- och sjukvårdens dagliga arbete genom att gemensamt prata om pedagogiska dimensioner i det arbete som pågår, kan utveckla lärande och lärstödjande ageranden. Samskapande lärande hälso- och sjukvårdspraktiker där alla deltagande gruppers behov och uppdrag medräknas, har implikationer på underläkares kompetensutveckling, studenters lärande, patienters involvering i sin vård och interprofessionellt och interdisciplinärt samarbete. Det ger också ledare möjlighet att knyta arbete med förbättringar av vårdens kvalitetet och säkerhet till dagligt vårdarbete.
|
|
| 10. |
- Wiss, Johanna
(författare)
-
Healthcare Priority Setting and Rare Diseases : What Matters When Reimbursing Orphan Drugs
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The rarity of a disease can give rise to challenges that differ from conventional diseases. For example, rarity hampers research and development of new drugs, and patients with severe, rare diseases have limited access to qualified treatments. When drugs are available, clinical evidence has higher uncertainty and the drugs can be very expensive. When setting priorities in the healthcare sector, treatments aimed at patients with rare diseases, so called orphan drugs, have become a source of concern. Orphan drugs seldom show solid evidence of effectiveness or cost-effectiveness. Still, treatments for rare disease patients, available on the European market, has increased rapidly since the adoption of a regulation offering incentives for research and development of orphan drugs. The question arises as to whether the publicly funded health care system should provide such expensive treatments, and if so, to what extent.This doctoral thesis aims to investigate healthcare priority setting and rare diseases in the context of orphan drug reimbursement. Priority setting for orphan drugs is located at the intersection of economic, ethical and psychological perspectives. This intersection is explored by studying the public’s view on the relevance of rarity when setting priorities for orphan drugs, and by examining how orphan drugs are managed when making reimbursement decisions in practice. Papers I and II in this thesis employ quantitative, experimental methods in order to investigate preferences for prioritising rare diseases, and the extent to which psychological factors influence such preferences. Papers III and IV employ qualitative methods to further explore what factors (apart from rarity) influence priority-setting decisions for orphan drugs, as well as how decisions regarding orphan drugs are made in practice in England, France, the Netherlands, Norway and Sweden. Combining quantitative and qualitative methods has provided a more comprehensive understanding of the topic explored in the thesis, and the methods have complemented each other.Paper I shows that there is no general preference for giving higher priority to rare disease patients when allocating resources between rare and common disease patients. However, results show that preferences for treating the rare patients are malleable to a set of psychological factors, in particular “proportion dominance”. Paper II shows that the identifiability of an individual has no, or a negative, influence on the share of respondents choosing to allocate resources to him/her (compared to a nonidentified individual). Paper III confirms that rarity per se is not seen as a factor that should influence priority-setting decisions (i.e. accept a greater willingness to pay for orphan drugs), however, other factors such as disease severity, treatment effect and whether there are treatment alternatives were seen as relevant for consideration. Paper IV explores the challenges with and solutions for orphan drug reimbursement, as perceived by different actors in five European countries. Perceived challenges are related to the components involved when making reimbursement decisions, to the reimbursement system, and to the acceptance of the final decision. Solutions are either specific for orphan drugs, or general measures that can be used for orphan drugs as well as for other drugs.In conclusion, priority setting for orphan drugs is complex and requires particular attention from decision makers. There are many factors to consider when making reimbursement decisions for orphan drugs. The consequences of a decision are potentially severe (both for rare disease patients and for common disease patients, depending on the decision) and psychological factors can potentially influence decisions.
|
|
