The aim of thesis is to create an overview of the holistic concept of domestic palliative care in the context of social work. This overview includes identification of the needs of people in the terminal stage of life and the dilemmas that families face in the final stage of the lives of their loved ones. The individual chapters of this thesis describe the needs of the dying and informal caregivers, and they point out the importance of the family environment for coping with death-related concerns. The qualitative survey carried out via semi-structured interviews includes identification of the needs of the dying and caregivers, the dilemmas of caregivers in making decisions about choosing the form of care for their loved ones, and mapping the awareness of caregivers about the possibilities of social work support.

Informed consent presents interesting legal and ethical challenges that have been widely discussed both in Czech and foreign literature. Significant portion of the literature is concerned with a relationship between doctors and their patients and with the historical development of this relationship or with the principle of autonomy as one of the fundamental principles in the area of healthcare provision. Issues related to informed consent of minors or persons with limited legal capacity are often given only small amount of scholarly attention. It is for this reason that this diploma thesis deals solely with the issues related to the health care provided to minors and persons with limited legal capacity. The aim of this thesis is to create an integrated overview of the law regulating informed consent of these persons, to introduce the most important changes that have been made in recent years by the Act on Health Services and Conditions of Their Provision and by the Civil Code, and finally to add some of my reflections on selected issues which I find particularly problematic. The sixth chapter of the thesis focuses on a comparison between the Czech law and the English common law regulating informed consent of minors and persons with limited legal capacity. The issues of informed consent is an...

The subject of this thesis is "Protection of personality in health care" which is an important and especially current topic. After the recodifications of relevant legislation - particularly the recent Civil Code (which is built on the natural law concept) - is more focused on the protection of personality and it generally changed perception of harm to personal rights. It is newly called "compensation for personal harm to the natural rights of person" and claims for compensation for damages and recompense of non-pecuniary damages is tied to a single court proceedings. The thesis is divided into four parts. The first part introduces the basic concepts related to personal rights and to certain medical terminology including explanation of the term "lege artis". The second part presents the relevant legislation, both national and international. The third and largest section is devoted to the protection of patient's personality which is defined by the individual rights of patient in health care. It refers to the patient's right to be treated "lege artis" during receiving of health services, patients' right to be informed and provide related informed consent (on which the thesis is particularly focused), medical confidentiality of health workers and issues related to handling the patient's medical...

The literature suggests that informed consent documents (ICDs) are not well understood by research participants. The patient decision aid model may suggest improvements for the informed consent process, particularly in the critical care setting (ICU) because of patient capacity issues. Our goal was to evaluate the extent to which existing ICDs used in ICU research adhere to standards and recommendations for high quality informed consent. Eighteen items from recommendations specific to ICU trials were added to a previously developed ICD evaluation tool. A sample of ICU trials was identified from clinicaltrials.gov database and the investigators contacted for their trial ICD. Conformity to the recommendations was variable. Some information are found routinely in consent documents for critical care research and some are not. Efforts should aim to establish tools for measuring decision quality in the ICU with the goal of facilitating and helping patients and surrogates work through trial participation decisions.

The purpose and aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values and support) may contribute to research fatigue among youth and parents of youth with HIV, CF, and T1D. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews, completed a demographics form, and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: blurred lines and hope for the future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated, and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered.

Personliga data samlas in när vi besöker internetsidor och tillgång till personliga data har snabbt fåttavgörande betydelse för alltfler företags värdeskapande. Därför har metodutveckling för tillgång tillpersonliga data blivit en central del i företags konkurrenskraft. Det medför emellertid stora och riskerför individers personliga integritet. För att motverka sådana risker infördes 2018 den europeiskadataskyddsförordningen (GDPR). Vår analys visar att GDPR ger ett stort tolkningsutrymme för hurföretag informerar om datainsamling via cookie-notifikationer. Utformningen varierar därför kraftigtoch designas ofta för att styra användare mot att acceptera datainsamling. Vår analys visar att eneffekt av GDPR är att antalet cookie-notifikationer ökat avsevärt och att individers medvetenhet omoch oro inför hur personliga data samlas in och används har ökat efter GDPR:s införande. Däremotpekar våra resultat på att GDPR inte haft några betydande effekter på användares beteende när detgäller att aktivt skydda sina personliga data. De viktigaste skälen till att GDPR inte haft några effekterpå användarnas beteende för att skydda sina personliga data är att det är alltför tidskrävande och svårt.Vår analys visar därför att det så kallade “informerade samtycket” till insamling av personliga datainte effektivt uppnås trots GDPR:s införande. Vår slutsats för fortsatt forskning är att det är angelägetmed fördjupad forskning kring obalanser mellan individer, företag och reglerande myndigheterkopplat till hur personliga data samlas in, sammanställs och används. / The collection of personal data has become a crucial part of companies value creation. Because ofthat, the development of methods to get access to power over the personal data has become a centralpart in the competitiveness between companies. This has resulted in risks and concerns concerningindividual privacy. To counteract these risks, the European Union introduced the General dataProtection Regulation (GDPR). Our analysis shows that one effect of the GDPR is an increased usageof cookie-notifications when informing users of data collection. Our analysis also shows that theregulation has room for interpretation for how the companies inform the user about data collectionpractices. That has resulted in varied design methods in cookie-notifications that often steer userstowards an acceptance of collection of personal data. Because of the increased usage of cookienotificationsusers awareness and privacy concerns has drastically increased. However, our findingsshow that the regulation hasn’t had an effect on user behavior, specifically connected to protectingtheir personal data online. The main reasons for this are that it takes a lot of effort and time tocomprehend how that is done practically. Therefore, our analysis shows that “informed consent” isnot effectively achieved in the current methods, despite it being required in the regulation. Ourconclusion is therefore that future research should focus on the imbalance between individuals,companies and regulatory instances when addressing the problems with collection and usage of personal data.

A quantitative descriptive study was conducted to establish professional nurses’ and patients’ knowledge and understanding of laparoscopic surgery and to determine whether nurses are sufficiently knowledgeable to disseminate adequate information about laparoscopic surgery to patients. Two state hospitals based in KwaZulu-Natal where laparoscopic surgery is done were selected and the respondents were selected through convenience sampling. Data were collected by administering questionnaires to theatre nurses (n=39), ward nurses (n=87) and patients (n=42) scheduled for laparoscopic surgery. The SPSS version 15 for Windows was used to compute the results. The findings revealed that the professional nurses were not sufficiently knowledgeable about laparoscopic surgery to give adequate information to patients and the patients themselves were not fully informed about all aspects of laparoscopic surgery including the possibility of conversion to open surgery, complications and advantages and after care. There is therefore a dire need for improvement of patient education to assist patients gaining optimal recovery / Health Studies / M.A. (Health Studies)

The work involves comparingethical values in the general population without serious damage to the general health, and in pacients within overal disease where i tis clear that the scale of values of the two groups are different. From futher examinations came some additional insights /see Chapter 4 d/ and chapter 5 work/. Results and conclusions are in line with Anglo-Saxon literature/ European and overseas/ and our own experience with treating pacients. No medical industry can not fully ensure full health of pacients. There is a set of values focused on specific medical professions and their own core values. These parameters set values based on many aspects of professional decision meking. And those serve to assess the pacientś needs. How to treat and the doctorś own medical approach to the pacient with severe overal ilness correspondens to the hierarchy of ethical values in Ozar-Sokol scheme. Proposal of six major ethical values concerning dentistry and access to treatment and justice in distribution and alocation of resources in surgical pacients with variety of serious medical interventions: heart surgery, transplants, etc./ ethical values contribute to the proces of decision- making in case of conflict. Not all Ozar-Sokol scheme recognizes those. From the perspective of pacients with serious...

The work involves comparingethical values in the general population without serious damage to the general health, and in pacients within overal disease where i tis clear that the scale of values of the two groups are different. From futher examinations came some additional insights /see Chapter 4 d/ and chapter 5 work/. Results and conclusions are in line with Anglo-Saxon literature/ European and overseas/ and our own experience with treating pacients. No medical industry can not fully ensure full health of pacients. There is a set of values focused on specific medical professions and their own core values. These parameters set values based on many aspects of professional decision meking. And those serve to assess the pacientś needs. How to treat and the doctorś own medical approach to the pacient with severe overal ilness correspondens to the hierarchy of ethical values in Ozar-Sokol scheme. Proposal of six major ethical values concerning dentistry and access to treatment and justice in distribution and alocation of resources in surgical pacients with variety of serious medical interventions: heart surgery, transplants, etc./ ethical values contribute to the proces of decision- making in case of conflict. Not all Ozar-Sokol scheme recognizes those. From the perspective of pacients with serious...

Indiana University-Purdue University Indianapolis (IUPUI) / Children's and adolescents' capacity to provide valid informed consent is one of the key ethical concerns in pediatric research, and the focus of this project. The original contribution to knowledge is the advancement of both conceptual and empirical bioethical approaches to research with vulnerable populations. First, a review of adolescent vulnerability is presented to highlight the complex interplay between capacity and other forms of vulnerability. This review is offered as an interdisciplinary analysis to better understand why the study of vulnerable populations is critical to the ethical advancement of clinical research. Results from this analysis suggest the need for enhanced screening techniques as well as the utilization of specialized staff to identify and reduce the impact of different forms of vulnerability. The primary tasks of the empirical portion of the dissertation were to: (1) Adapt a validated adult competency assessment tool for clinical research, the MacArthur Competency Assessment Tool for Clinical Research, to assess the capacity of children and adolescents to consent to clinical research; (2) Identify predictors that impact children and adolescents’ capacity to provide consent to clinical research; and (3) assess differences and similarities in capacity between healthy and chronically ill children and adolescents. Overall results suggest adolescent capacity to consent to research was similar to adults, and most strongly associated with their family's socioeconomic status as well as their level of health literacy. These findings contrast starkly with the age-based criterion for providing consent currently utilized in assent and consent determinations. These findings also provide insights into ways to ethically involve youth in complex biomedical research.