About the person. An approach to the discussions about the end of life
To Michelle Piperberg of the Faculty of Philosophy at the University of Barcelona for the project: About the "person". An approach to the discussions about the end of life.
This project has several aims: The first is to define the concept "person" within the context of bioethics in developed countries in order to later analyze the different liberal attitudes and standpoints in end of life debates. The project also aims at addressing the implications of the concept "person" in a practical sense and how this concept bonds with the decision making process at the end of life. Finally the study deals with issues in relation to discussions about the end of life process such as dualism (body-person) in other words the distinction between "biographical death" or that of the person, and "biological death" or that of the organism.
Implementation of Advance Care Planning at the Albada Health Center. A qualitative study
To the team led by Germán Diestre of the Albada Healthcare Center for the project: Implementation of Advance Care Planning at the Albada Health Center. A qualitative study.
The main purpose of this project is to discover the perceptions and aptitudes of patients/representatives, families and healthcare professionals at the Albada Healthcare Center in relation to Advance Care Planning (ACP) and compare these with the center's official care program for End of Life Care.
The aim is to provide proof that the introduction of ACP helps provide a better experience for patients, their families and healthcare professionals as well as a significant improvement in the quality of healthcare at the end of life. Additionally the study hopes to gain insight into how the different parties involved perceive the process, in order to develop areas of improvement in the healthcare program and to define new evaluation indicators and criteria.
Organ Donation in Spanish Emergency Ambulance Services (ODISEAS)
05 January 2014
To Iván Ortega and David Rodríguez Arias of the Institute of Philosophy at the Higher Council for Scientific Investigation (CSIC) for the project: Organ Donation in Spanish Emergency Ambulance Services (ODISEAS).
The aims of this project are, on the one hand to explore the opinions of the different parties involved and identify the ethical problems that arise from the current Donation after Cardiac Death (DCD) protocols due to the non-existence of parallel Cardiopulmonary Resuscitation programs. On the other hand, the study also aims to encourage the different parties involved to enter into an ethical deliberation on the mentioned conflicts. Finally, the study proposes that the way in which out-of-hospital cardiac arrest (OHCA) is dealt with, be made compatible with the aforementioned protocols and with future Cardiopulmonary Resuscitation programs. The study expects to have an effect on how the Emergency Health Services in Spain operate and on others that follow similar programs.
The triad formed by medical staff, family and patient in conditions of intersexuality. The situation in Spain
To Rosa María Medina and Sandra Fernández of the Faculty of Medicine at the University of Granada for the project: The triad formed by medical staff, family and patient in conditions of intersexuality. The situation in Spain.
The project aims to develop an exploratory study on the relationship between the team of professionals - the families - and patients in the context of the Spanish State, in cases of intersexuality in children.
In order to achieve this, it is essential to first determine the scope of the problem, the techniques and the different professionals that will interact with the mentioned triad. The second step is to analyze the role that the triad plays in the relationship that the patient maintains with his/her own body and identity. Finally, it is important to evaluate the results obtained, in order to achieve a better understanding of Informed Consent in cases of intersexuality.
Communication of advanced cancer from the fathers to the children and adolescents
Gestation by substitution. Analysis of a current phenomenon
05 January 2014
To Marta Roca i Escoda at the Institute of Law and technology at the UAB for the project: Gestation by substitution. Analysis of a current phenomenon.
The main aim of this project is to identify the different stances that emanate from the judicial and legislative discourse regarding this phenomenon. Different points of view will be compared to the stance adopted by couples composed of two men, who see these techniques as a legitimate way to access paternity, and who argue that this is a question of social justice.
Información de placebo en los ensayos clínicos y su influencia en la decisión de los participantes (Placebo information in clinical trials and its influence on participant decision)
To the team lead by Magí Farré Albaladejo and Astrid Hernández of the IMIM Foundation for the project: Placebo information in clinical trials and its influence on participant decision.
This project consists of two sub-projects. The first is based on a review of how the placebo is explained on the information and consent pages for clinical trials presented to the CEIC-Parc de Salut Mar (Clinical Investigation Ethics Committee). The second, in a simulated clinical trial, aims to discover whether the amount of information provided to patients on the placebo, in the information pages, influences their decision to take part or otherwise.
La percepció de confidencialitat en les persones grans de l'àmbit rural (Perception of confidentiality in elderly patients in rural communities).
Roser Marquet Palomer of the ICS EAP Canet de Mar (Canet de Mar Local Health Center) for the Project: Percepció de confidencialitat en les persones grans de l'àmbit rural (Perception of confidentiality in elderly patients in rural communities).
This project aims to discover the point of view of the elderly who live in rural areas: who they consider to be their necessary confidantes, what type of health information they allow these confidantes to be aware of, and under which circumstances. The aim is to incorporate the findings of this study when designing the procedures to be used in healthcare centers in rural areas.
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Guia orientativa per a guardadors de fet de persones amb malaltia d'Alzheimer als quals es proposa participar en projectes de recerca clínica (Orientation guide for de facto guardians of people with Alzheimer’s disease who decide to take part in clinical investigation projects).
To the team led by Joan Canimas of the Campus Arnau d'Escala Foundation for their: Guia orientativa per a guardadors de fet de persones amb malaltia d'Alzheimer als quals es proposa participar en projectes de recerca clínica (Orientation guide for de facto guardians of people with Alzheimer's disease who decide to take part in clinical investigation projects).
The main objective of the project is to confect an informative guide to help orientate de facto guardians or conservators concerning the process by which they decide whether or not the person they are taking care of should participate in a clinical trial.
L'experiència de ser cuidat en un hospital. Perspectiva des del client immigrat econòmic extracomunitario (The experience of being cared for in hospital from the perspective of the non EC economic immigrant)
This study arises in view of the interest and concern to explore, discover and understand, how immigrants being cared for in a hospital infirmary at any of the different Catalonian University Hospitals, feel about the experiences they go through. The study is centered on economic and / or political immigrants from outside the EC.
Protección de la confidencialidad en las historias clínicas informatizadas: los pacientes en la consulta de Salud Mental hospitalaria (Protecting confidentiality in digitalized clinical records: patients under mental health hospital consultation)
This project has the following objectives:
- To find out the opinions of mental-health-care professionals and the methods they use to ensure the confidentiality of patient information stored in digital files.
- To make proposals which can conciliate the common aspects of digitalized clinical records with the patient's right to confidentiality on certain specific details.
Ventilación mecánica, gastrostomía percutánea y toma de decisiones en pacientes con ELA: encuesta sobre la opinión de los pacientes, familiares y médicos (Mechanical ventilation, percutaneous gastrostomy and decision making in patients with ALS: an opinion survey among patients, their relatives and doctors)
05 January 2014
To the team led by José Luís Villanueva in a multi-center study carried out at five Madrid hospitals for their study: Ventilación mecánica, gastrostomía percutánea y toma de decisiones en pacientes con ELA: encuesta sobre la opinión de los pacientes, familiares y médicos (Mechanical ventilation, percutaneous gastrostomy and decision making in patients with ALS: an opinion survey among patients, their relatives and doctors).
The objective of this project is to evaluate the usefulness of planning treatment in advance when dealing with patients who have Amyotrophic Lateral Sclerosis. In particular, the aim is to evaluate the different perceptions held among the individuals involved in the healthcare process (doctors, main family caregivers and patients).
Listening to the voices of children. Ethical aspects of the process of informing hospitalized minors
The aim of this study is to explore the positive and negative aspects of informing a hospitalized minor, and to explore the child's perception of this process. The aims of the project are:
- to identify the factors which facilitate or obstruct the process of informing the child and his or her family in a health setting
- to understand the child's perception of the information supplied, from the perspective of health ethics.
Portal on advance directives across the world
05 January 2014
The purpose of this project is to create a global technological platform on advanced directives. The work will be developed using a web-based software application to incorporate contributions from a range of sources, and will use web 2.0 tools.
Positive eugenics and its impact on sporting practice
05 January 2014
Medicine has developed techniques which make it possible to submit embryos to preventive genetic testing to avoid the risk of transmitting hereditary diseases. However, this corrective intervention could give way to perfective intervention to improve memory, musculature and height, or to genetically select for sex. This forces us to consider whether genetic modifications in sportspeople to improve their physical abilities can be justified.
Social work with families: the responsibility of social workers in the self-determination of the most vulnerable groups
The aim of this project is to identify social work practice with families in vulnerable groups with regard to self-determination during illness. It also seeks to identify the role of the social worker in guaranteeing individual rights to information and decision-making.
Dementia and the principle of autonomy
05 January 2014
The team directed by Araceli Teixidó of the Hospital St. Jaume of Calella for the study: Anàlisi qualitativa del procés d'informació diagnòstica en pacients amb demència a la Corporació de Salut del Maresme i la Selva: s'ha d'incloure el malalt dement en el procés d'informació de la seva malaltia? (Dementia and the principle of autonomy. A qualitative analysis of the process of diagnostic information in patients with dementia with the Health Corporation of the Maresme and La Selva: Should patients with dementia be included in the information process regarding their illness?).
This study takes as its starting point the perception of medical staff regarding patients with dementia. After diagnosis, both the opinions held towards patients and the relationship with them usually changes. To identify whether this perception fits with the reality, the study seeks to identify whether or not doctors envisage a diagnostic information process with dementia patients, as is the case with other serious illnesses, or whether they exclusively address the patient's relatives. In addition, the research also considers the position of relatives and of some patients.
The final objective is to identify the level of autonomy granted to the patient during the process, and whether this is related to the patient's actual level of capacity or if this is assumed to be non-existent as a result of the diagnosis.
Donation of samples of tissue for research: perceptions and availability among oncology patients
To the researchers María Luisa Martínez, Margarita García and Valentín Navarro of the Catalan Oncology Institute, Hospital Duran i Reynals in Barcelona for the study: Donació de mostres de teixit per investigació: percepcions i disponibilitat entre malalts oncològics (Donation of samples of tissue for research: perceptions and availability among oncology patients).
Knowledge of cancer is growing exponentially due to knowledge of the human genome and the advantages which technological progress offers to science. This scientific development depends on the availability of human tumour samples and other tissue samples. Obtaining these has become a priority.
The study aims to explore the perception and availability of cancer patients with regard to the donation of samples for research and storage. As secondary goals, it also seeks to identify the perceptions of cancer patients regarding research with human samples, to identify factors associated with availability for donation, and to draw up and validate the questionnaire for evaluation of the study variables.
Legal problems of biobanks
05 January 2014
To Asaf Grauer Rodoy of the Department of Criminal Law at the Universidad de Valencia for the study Problemes jurídics dels biobancs (Legal problems of biobanks).
As a result of the recent introduction of Act 14/2007, the Spanish legal system has recognised the bio-bank phenomenon for the first time. However, the existing legislation is a long way from resolving all the doubts which have arisen in practice.
The project aims to conduct a thorough study which provides a satisfactory explanation of the legal reality and of the uses of bio-banks in modern society. To achieve this, it will analyse a range of issues which the legislation has avoided but which are essential for the legal regulation of biobanks.
Validation of the MacCAT-T scale: a tool for assessing competence to take health decisions
The team directed by Pablo Hernando of the Parc Taulí Health Corporation of Sabadell for the study Validación de la escala MacCAT-T: herramienta para evaluar la capacidad en la toma de decisiones sanitarias (Validation of the MacCAT-T scale: a tool for assessing competence to take health decisions).
The main objective of this project is to validate, adapt and translate the MacCAT-T into Spanish. The MacCAT-T is a tool which examines the ability of individuals to understand, reason, appreciate and express a choice in order to consent to medical treatment. In the United States, this tool is used as a reference in legal contexts, but in Spain we still lack capacity assessment protocols, of which a tool like the MacCAT is an essential part.
In addition to adapting the MacCAT-T, the study will observe its correlation with the CME (Cognitive Mini-Exam), analyse the results of the MacCAT in four patient groups, and assess how easy it is to use.