Patients' self-empowerment : patients and informal caregivers taking the lead

Background: It is rather common for patients and informal caregivers affected by chronic conditions to experience aspects of disempowerment being in a paternalistic structure. Patient empowerment is often understood as a power to achieve control over the determinants of a person’s quality of life, as well as being authorized by healthcare professionals and steered from a healthcare perspective on self-management and care. Patient self-empowerment, on the other hand, describes patients’ and informal caregivers’ power to perform activities that are not mandated by health care and to take control over their own lives and self-management with increased self-efficacy and confidence. Self-empowered patients and informal caregivers are described in the literature by many different concepts and can be the key to future development of health care and diffusion of innovation solutions for themselves and their peers. Knowledge about self-empowering behaviors and motivation of patients and informal caregivers is scarce. Further, the perspective of healthcare professionals and their attitudes, experiences, and workplace support when working with self-empowered patients and informal caregivers has not been researched extensively. Aim: To further understand how patients and informal caregivers can take the lead in their own care and self-management, the overall aim of this thesis is to study the driving forces and self-empowering behaviors of patients and informal caregivers affected by chronic conditions, and how healthcare professionals and the healthcare systems meet these behaviors. Methods: This is a mixed methods thesis with four studies deriving from two projects. Qualitative data collection was done through semi-structured interviews (study I-III) and focus groups (study III), and quantitative data was collected through surveys (study II & IV). Patients and informal caregivers affected by chronic conditions and with self-empowering behaviors participated in study I (n=15) and study III (n=48), and persons with Parkinson Disease performing self-tracking participated in study II (n=187). Healthcare professionals were respondents in study IV (n=279). The data were analyzed using five different approaches: Framework analysis (study I), Conventional content analysis (study II), Thematic analysis (study III), Direct content analysis (study III), and Descriptive analysis (study II & IV). Inductive, deductive, and abductive reasonings were used to process the data to draw conclusions. Results: As self-empowered patients and informal caregivers, the second generation of e-patients generated health data and learned how to handle their situation from it. Further, they invented self-management solutions for themselves and their peers, as well as innovations to co-operate with healthcare professionals. This was done in line with support for their psychological needs; relatedness, competence, and autonomy. Still, to generate own data through self-tacking always came with the risk of being obsessed of their own condition. Other behaviors were experienced as forced upon the patients and informal caregivers and not completely voluntary, whereas some behaviors were wished to be expanded. This might lead to difficult situations with healthcare professionals, not having the time or understanding of these self-empowering behaviors. Still, there were overall positive attitudes from healthcare professionals, even though they lacked experiences of working together with self-empowered patients and especially informal caregivers. There were no existing workplace support or guidelines for meeting patients and informal caregivers with self-empowering behaviors. Conclusion: This thesis makes a unique contribution by analyzing patient self-empowerment as well as healthcare professionals’ attitudes towards self-empowering behaviors. With a rather limited understanding of self-management tasks, healthcare professionals are here provided with a better understanding of self-empowering behaviors and needs among patients and informal caregivers. Self-empowerment will continue to influence the development of participatory healthcare. Hence, to understand the behaviors of the users of health care are essential to further develop towards experienced-based participatory design, person-centered health care, and support for healthcare professionals to partner with patients and informal caregivers in a joint empowerment

Semantics-Empowered Big Data Processing with Applications

We discuss the nature of Big Data and address the role of semantics in analyzing and processing Big Data that arises in the context of Physical-Cyber-Social Systems. We organize our research around the Five Vs of Big Data, where four of the Vs are harnessed to produce the fifth V - value. To handle the challenge of Volume, we advocate semantic perception that can convert low-level observational data to higher-level abstractions more suitable for decision-making. To handle the challenge of Variety, we resort to the use of semantic models and annotations of data so that much of the intelligent processing can be done at a level independent of heterogeneity of data formats and media. To handle the challenge of Velocity, we seek to use continuous semantics capability to dynamically create event or situation specific models and recognize relevant new concepts, entities and facts. To handle Veracity, we explore the formalization of trust models and approaches to glean trustworthiness. The above four Vs of Big Data are harnessed by the semantics-empowered analytics to derive value for supporting practical applications transcending physical-cyber-social continuum

UNDERSTANDING THE MECHANISMS OF PROTOCOL IMPLEMENTATION FOR THE EARLY RECOGNITION AND TREATMENT OF PROBABLE SEPSIS

The purpose of this research was to construct a program theory that identifies and describes the salient contexts and mechanisms that can lead to successful implementation of a sepsis screening intervention. Successful implementation of evidence-based clinical practice is governed by human and environmental factors that can differ between local settings (Sales, Smith, Curran, & Kochevar, 2006). Failed or partial implementation of clinical practices is common (Davies, Walker, & Grimshaw, 2010) impacting negatively on patient safety, patient outcomes, and systemic inefficiencies. A theory-based approach to implementation provides a structure that can allow local teams the ability to move away from ad hoc or intuitive planning (Eccles, Grimshaw, Walker, Johnston, & Pitts, 2002). A customized Rapid Realist Review was used to identify the hypothetical implementation resources, context, and mechanisms that are salient in causing successful implementation of sepsis screening interventions. This process included a rapid review of the literature using a realist analytical lens and multi-phase refinement of the theoretical propositions with 15 physicians and nurses. The final program theory included multiple outcomes that must be reached in order to achieve successful implementation. Successful implementation was defined as achieving fidelity and sustainability of the intervention. Salient implementation resources and context were identified that trigger three middle-range promoting mechanisms and two inhibiting mechanisms. Within each of these mechanisms there are multiple lower level mechanisms operating that are salient for all clinicians and professional sub-groups. The final program theory hypothesized the salient features of a complex reality that can be applied or adapted for the implementation of a sepsis screening intervention in other local contexts or for the implementation of other similar small-scale interventions

A deeper understanding of service users’ needs, self-management support and user involvement in Healthy Life Centres: A qualitative study on lifestyle change in persons with overweight or obesity

Background: Worldwide, including Norway, overweight and obesity present some of the greatest health challenges. Since the 1980s, the incidence has tripled, leading to a subsequent high prevalence of chronic lifestyle diseases or non-communicable diseases (NCDs), such as cardiovascular disorder, diabetes type 2, some types of cancer, muscle and skeleton disorders and mental health challenges. This has led to an increased focus on lifestyle interventions that emphasise self-management of the condition, as well as the need for users to be readily involved and participating. Therefore, self-management support (SMS) and user involvement have become two important concepts in health services in today’s society. The Norwegian Directorate of Health recommended the establishment of Healthy Life Centres (HLCs) in all municipalities to help facilitate and empower people to obtain a greater mastery of the health challenges they face. HLCs assist persons at risk of NCDs or those in need of support for health behaviour changes or weight management. Behaviour change refers to efforts to change people’s personal habits to prevent disease. The purpose of these self-management interventions is mainly to promote and improve people’s physical activity and diets. There is no clear way of addressing overweight and obesity in primary care; knowledge regarding lifestyle interventions in HLCs and what works is still sparse and needs further investigation. Aim: The overall aim of this PhD-study was to contribute to a deeper understanding of service users’ needs, beneficial SMS and user involvement in lifestyle interventions in Norwegian primary care HLCs. The study explored adult service users’ and healthcare professionals’ (HPs) experiences and perceptions of these phenomena. Three sub-studies were conducted. The aim of the first study was to explore HLC service users’ experiences of living with overweight or obesity and their perceptions of seeking help to change dietary and activity habits. The second study aimed to explore service users’ experiences of beneficial SMS and user involvement. The aim of the third study was to explore how HPs provide SMS and what user involvement implies for HPs in HLCs. Methods: This study involved a qualitative, explorative and interpretative design grounded in hermeneutic methodology and tradition. Semi-structured in-depth interviews with service users participating in lifestyle interventions in HLCs were conducted and analysed using qualitative content analysis. A total of 13 service users (five men and eight women), aged 30-69, from five different HLCs, participated (Papers I and II). Focus groups were used to collect data from healthcare professionals working in HLCs and this was analysed using thematic analysis. 10 healthcare professionals from eight different HLCs participated in two focus group interviews (Paper III). Results: The analysis of the first study (Paper I) resulted in one main theme: Searching for dignity, which could be split into two themes: 1) Needing to justify avoidance of personal responsibility and 2) A desire to change. In the second study (Paper II), one main theme was identified: Regaining self-esteem and dignity through active involvement and long-term self-worth support in partnership with others. This main theme comprised four themes: 1) Selfefficacy through active involvement and better perceived health, 2) Valued through HPs acknowledgement, equality and individualised support, 3) Increased motivation and self-belief through fellowship and peer support and 4) Maintenance of lifestyle change through accessibility and long-term support. The analysis in the third study (Paper III) resulted in one overall theme: A partnership based on ethical awareness, a non-judgemental attitude, dialogue and shared responsibility, comprising four interrelated themes: 1) Supporting self-efficacy, self-worth and dignity through an attitude of respect, acknowledgement and generosity, 2) Promoting self-belief and self-perceived health, 3) Collaborating and sharing responsibility and 4) Being flexible, adjusting and sharing time. Conclusion and implications for practice: A synthesis of the findings in the three papers can provide a deeper understanding of service users’ needs, beneficial SMS and user involvement by means of three new themes. The first theme, The dual face of responsibility in health – the burden and the value is based on the service user’s search for dignity and the emotional alternation between shame, guilt and pride. This duality can be understood as a burden of shame and weight stigma that influence the user’s capability to assume personal responsibility. The value can be understood as a perception of dignity, pride, active involvement and assuming responsibility. HPs need to address self-conscious feelings like guilt, shame and internalised stigma, as well as responsibility related to dilemmas about right and wrong lifestyles. The second theme, The art of acting ethically seems to be an integrated attitude of beneficence in HPs’ practice and is demonstrated by their capability to engage in a person-centred approach and to see the service users’ existential needs in a vulnerable situation. HPs’ self-worth support is based on ethical awareness, a non-judgemental attitude, dialogue and shared responsibility. This may help the service users to increase their self-efficacy and self-management and regain their integrity, self-respect and dignity. The last theme, The challenges and possibilities in sharing responsibility, is built on the findings related to HPs treating service users as equal partners in a collaborative partnership based on shared responsibility. The challenges are related to the need for long-term follow-up, emotional and social support, personal responsibility in an obesitypromoting environment and structural and political responsibility. An important therapeutic mechanism in beneficial SMS and user involvement may lie in the possibility of sharing responsibility, which may reduce the burden of personal responsibility, shame, guilt and weight stigma. This may also increase self-efficacy and help service users live a healthier life and experience a better quality of life and wellbeing. Accordingly, there is a possibility of sharing responsibility at a relational level and to highlight collective approaches from a socio-ecological perspective

Improving quality of summative eHealth evaluations

Summative evaluation, which is conducted at the end of an eHealth trial or implementation,assesses outcomes, produces evidence, and advances knowledge of eHealth implementationsin healthcare provisions. Therefore, its high quality is essential in order to reap the benefits ofthe results generated by evaluation studies. Quality is achieved in eHealth evaluation throughcontextual sensitivity, adequate research design, adherence to standards, a mixed-methodresearch approach, and ethical handling of data. However, insufficient quality in eHealthevaluation studies leads to decision makers and other potential users disregarding their results,which leads to the resources and effort involved in conducting an evaluation being wasted.The purpose of this thesis is to study how summative eHealth evaluations can be improved tosupport the determination of eHealth value in a specific context as well as the use of evidenceproduced during eHealth interventions. This thesis is built on a single case study of a summativeeHealth evaluation of an eHealth implementation project within different healthcare contexts.The thesis focuses on the different phases of evaluation process, assesses adequacy of standards,explores value that the eHealth intervention delivered in different contexts, and studies howevidence from evaluation is further used.The thesis extends knowledge on eHealth evaluation quality by providing deeper insights intothe problems in the existing quality criteria and by introducing two new criteria for quality ineHealth evaluations: capturing value of an eHealth solution and involving healthcareprofessionals in the intervention and its evaluation. The thesis reveals that meeting some of thecriteria is not always practical, and that evaluators might make trade-offs among the criteria.The findings point to a need to improve methodologies for eHealth evaluations by providingbetter guidance to evaluators and validating evaluation standards in different locations. Thethesis also suggests viewing value of an eHealth solution as a holistic view of the createdmonetary and nonmonetary benefits of eHealth that require monetary and nonmonetarysacrifices in a particular context. In addition, the thesis proposes a model for assessing value ofan eHealth solution

Self-Management and Adherence with Exercise-Based Falls Prevention Programmes for Older People with Long-Term Conditions: A Framework for Physiotherapy Practice

Introduction This study aimed to work with older people attending a regional falls and syncope service, older people with the falls-associated chronic liver disease primary biliary cirrhosis, relatives and local physiotherapy practitioners to develop a framework for physiotherapy practice to promote self-management and adherence with an exercise based falls prevention programme for older people with a long-term condition. Methods Focus groups were conducted with older people attending a regional falls and syncope service (3 groups, total 12 participants), relatives (1 group, total 4 participants) and local physiotherapists (4 groups, total 18 participants). Participants were asked to propose strategies to promote self-management and adherence with an exercise-based falls prevention programme. These strategies were tested and refined in an experimental case-series for 10 older people with primary biliary cirrhosis. Findings The older people participating in the focus group research expressed a long-term commitment to exercise-based falls prevention programmes. They valued approaches that promoted self-efficacy and self-management. The physiotherapists indicated that the older people they came into contact with were poorly motivated to participate in an exercise-based falls prevention programme. They demonstrated a limited awareness of strategies to promote self-efficacy and self-management. Visual analysis of the experimental case-series data revealed unstable baselines and fluctuations throughout the treatment and follow up phases in keeping with variations in disease-specific quality of life measures, suggesting that long-term conditions interact with measures that predict and monitor falls-risk and selfefficacy. The exercise-based falls prevention programmes had perceived benefit for older people with primary biliary cirrhosis. However, this was not evident in the measures selected, many of which demonstrated a ceiling effect in the population group under investigation. The self-management strategies had low levels of perceived acceptability. Participants indicated that they lacked the necessarily skills to monitor their progress with an exercise-based falls prevention programme on completion of the experimental case-series. Conclusion This study demonstrated that self-management does not sit comfortably within the philosophy of routine clinical practice. The framework for physiotherapy practice developed during the course of the current study has the potential to empower physiotherapists and older people with long-term conditions identified as being at increased risk of falling to work in partnership to challenge existing approaches to clinical service delivery

Logic Salience : Navigating in institutional landscape of funding volatility and ideological disputes in nonprofit hybrid organizing

The concept of institutional logics is key to those who investigate organizational change, especially those who seek to understand the tension and impact of combining the logics of market and mission. Such a combination of logics, being an espoused financial sustainability solution for the funding-scarce nonprofit sector, is an increasingly prominent phenomenon. While there are several studies on various ways in which logics co-exist in hybrid contexts, the role of actors in this institutional complexity has received lesser attention. The organizations of this study are nonprofits in Sweden and South Africa. Through qualitative methods, the role played by individual actors in negotiating multiple logics is examined. The findings suggest that nonprofit actors may express support for multiple logics, but they ultimately respond to them according to the logic that they identify themselves with the most, tied to the values and ideological preferences they hold.From these findings, a concept emerged. The concept of ‘logic salience’ is proposed and developed abductively by exploring it as an analytical tool throughout the remainder of the case organizations, which are situated in paradoxical and adversarial settings. The successive refinement of the concept constitutes both input and output of the abductive research approach. Specifically, three categories of individual logic salience are identified. These prompt various individual responses, which, in turn, condition organizational responses that have implications for nonprofit organizing and hybridity. In addition, three types of hybridity that give an indication of the viability of the market-mission hybrid form are also identified.Through logic salience, this dissertation theoretically accounts for both the enabling and constraining properties of logics and at the same time elucidates and strengthens the role of individual agency in organizational responses and actions. It contributes to the fields of institutional logics, institutional work and hybridity through a framework that illustrates a cycle that starts from influences from the institutional field down to the organizational and individual levels, and back to the institutional field, which thus exemplifies the interconnectedness of the external and internal environments. Apart from a concept that can be useful in studying and understanding how and why actors respond to multiple logics in particular ways, the dissertation also provides an update on the current funding challenges to which nonprofit organizations are increasingly exposed. These challenges have significance not only for practitioners but also for funding institutions, policymakers, research and societies considering the nonprofit third sector’s attributed role in addressing government and market failures

The Contribution of Ethical Reasoning Skills in Forensic Science

Forensic science applies scientific methods to matters related to the legal system. Members of the forensic field are part of the criminal justice system charged with upholding justice through science. Numerous wrongful convictions and ethical issues involving forensic science indicate a need to dissect the field from a different perspective. Stories in the media regularly identify ethical issues in forensic science ranging from individual misconduct to systemic organizational failures that lead to injustice. Even with these journalistic investigations, a lack of awareness remains regarding the contribution of ethical reasoning skills in forensic science. This dissertation addresses that gap in the forensic field by discussing the potential contribution of ethical reasoning skills to forensic science. Additionally, embedded throughout the dissertation is a discussion regarding how the principles and reasoning in bioethics contributes to ethical reasoning skills in forensic science. The dissertation begins by exploring the criminal investigation process along with using a sexual assault investigation to explore paths where bioethics can guide practice. Next, the foundational ethical principles and reasoning in bioethics are presented. Examination of the foundational principles in bioethics and their application in healthcare ethics and research ethics provides the ethical groundwork from which ethical reasoning skills develop. Then a return to forensic science explores the ethical culture in the field. In addition to a bioethics framework, content focused on different reasoning models highlight the contribution of ethical reasoning skills in forensic science. The work of American philosopher Charles Sanders Peirce that focuses on solving problems and analyzing situations using three types of reasoning modes is paramount to understanding and applying reasoning skills. Building on the theoretical foundation from the previous chapters, problem-based learning activities were developed to create educational tools designed to foster ethical reasoning skills in forensic science

Innovation in HSE management for sustainable development

Abstract. This thesis studies innovation in health, safety and environment (HSE) management for sustainable development. The objective of this study is to identify innovation in HSE management that makes a positive influence on sustainable development. In order to achieve the research aim, the main research question “How does innovation in HSE management contribute to sustainable development?” is created. The main question is answered through two sub-research questions. The first sub-question discovers technological and non-technological innovation measures in HSE management. The second sub-question looks at how each innovation have an impact on sustainable development. In this study qualitative research with abductive approach is carried out. Based on the theoretical framework, a set of questions were developed to collect the empirical data. The primary data are gained via email questionnaire from three (3) HSE professionals and three (3) senior managers in the construction industry. For data analysis, thematic analysis is used to identify and analyze themes within the collected data. The findings of the research present three (3) technological innovations, i.e., wearable technology in personal protective equipment, virtual reality (VR) technology in HSE training and digitalization in documentation, and three (3) non-technological innovations, i.e., HSE forum discussion, well-being program and reforming policy and standard. It is confirmed by the questionnaire respondents and supported by the literature review that the mentioned six (6) innovation measures may contribute to achieving three (3) sustainable development goals (SDGs); SDG 3 Good health and well-being, SDG 8 Decent work and economic growth, and SDG 13 Climate actions. It is identified that innovation in HSE management system is beneficial to HSE performance by improving the health and safety of employees as well as protecting the environment. Innovations in HSE management can assist industrial companies to provide a safe working environment for their employees and reduce HSE-related physical incident and mental illness. This may lead to economic growth and social sustainability by effectively achieving the SDGs. This paper contributes in HSE field by elaborating the application of scientific knowledge in a practical way as well as promoting sustainable development at an organizational level. The paper also encourages companies to make a commitment for corporate social responsibility and reach their sustainable development goals more effectively by suggesting innovative tools reviewed by the experienced HSE professionals and senior managers