When to stop? Decision-making when children’s cancer treatment is no longer curative: a mixed-method systematic review

BACKGROUND: Children with cancer, parents, and clinicians, face difficult decisions when cure is no longer possible. Little is known about decision-making processes, how agreement is reached, or perspectives of different actors. Professionals voice concerns about managing parental expectations and beliefs, which can be contrary to their own and may change over time. We conducted the first systematic review to determine what constitutes best medico-legal practice for children under 19 years as context to exploring the perspectives of actors who make judgements and decisions when cancer treatment is no longer curative. METHODS: Theory-informed mixed-method thematic systematic review with theory development. RESULTS: Eight legal/ethical guidelines and 18 studies were included. Whilst there were no unresolved dilemmas, actors had different perspectives and motives. In line with guidelines, the best interests of the individual child informed decisions, although how different actors conceptualized ‘best interests’ when treatment was no longer curative varied. Respect for autonomy was understood as following child/parent preferences, which varied from case to case. Doctors generally shared information so that parents alone could make an informed decision. When parents received reliable information, and personalized interest in their child, they were more likely to achieve shared trust and clearer transition to palliation. Although under-represented in research studies, young people’s perspectives showed some differences to those of parents and professionals. For example, young people preferred to be informed even when prognosis was poor, and they had an altruistic desire to help others by participating in research. CONCLUSION: There needs to be fresh impetus to more effectively and universally implement the ethics of professionalism into daily clinical practice in order to reinforce humanitarian attitudes. Ethical guidelines and regulations attempt to bring professionals together by articulating shared values. While important, ethics training must be supported by institutions/organizations to assist doctors to maintain good professional standards. Findings will hopefully stimulate further normative and descriptive lines of research in this complex under-researched field. Future research needs to be undertaken through a more deliberative cultural lens that includes children’s and multi-disciplinary team members’ perspectives to more fully characterize and understand the dynamics of the decision-making process in this specific end-of life context

Ethical issues relating to the banking of umbilical cord blood in Mexico

<p>Abstract</p> <p>Background</p> <p>Umbilical cord banks are a central component, as umbilical cord tissue providers, in both medical treatment and scientific research with stem cells. But, whereas the creation of umbilical cord banks is seen as successful practice, it is perceived as a risky style of play by others. This article examines and discusses the ethical, medical and legal considerations that arise from the operation of umbilical cord banks in Mexico.</p> <p>Discussion</p> <p>A number of experts have stated that the use of umbilical cord goes beyond the mere utilization of human tissues for the purpose of treatment. This tissue is also used in research studies: genetic studies, studies to evaluate the effectiveness of new antibiotics, studies to identify new proteins, etc. Meanwhile, others claim that the law and other norms for the functioning of cord banks are not consistent and are poorly defined. Some of these critics point out that the confidentiality of donor information is handled differently in different places. The fact that private cord banks offer their services as "biological insurance" in order to obtain informed consent by promising the parents that the tissue that will be stored insures the health of their child in the future raises the issue of whether the consent is freely given or given under coercion. Another consideration that must be made in relation to privately owned cord banks has to do with the ownership of the stored umbilical cord.</p> <p>Summary</p> <p>Conflicts between moral principles and economic interests (non-moral principles) cause dilemmas in the clinical practice of umbilical cord blood storage and use especially in privately owned banks. This article presents a reflection and some of the guidelines that must be followed by umbilical cord banks in order to deal with these conflicts. This reflection is based on the fundamental notions of ethics and public health and seeks to be a contribution towards the improvement of umbilical cord banks' performance.</p

Bienestar y familia, una mirada desde la psicología positiva

Este libro está dirigido a estudiantes y profesionales en psicología y áreas afines, como enfermería, trabajo social o educación, y a los interesados en personalidad positiva. Cada capítulo se presenta de manera sencilla y con una estructura didáctica, pero sin perder rigor científico y calidad de la revisión, con el fin de facilitar el acceso a la información sobre bienestar individual, familiar y social de una forma accesible para adentrarnos al estudio de temas de psicología positiva. Dadas las temáticas, se consideró pertinente dividir este libro en dos secciones: I. Psicología positiva y bienestar. II. Bienestar individual y familiar.Universidad Autónoma del Estado de México y Ediciones y Gráficos Eón, S.A. de C.V

Local research committees in Mexico : their role in the ethics of scientific research

EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Additional file 1: of Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study

Topic guide. Outline of the topic guide. An interview topic guide. (DOCX 34 kb

Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico

How primary carers, physicians, health education professionals, and others see or understand the subject of menstruation in women with intellectual disability (ID) is rooted in the socio-cultural context and in the socio-economic structures in which all of them live. The aim of this study was to explore how parents of young females with ID and special education professionals perceive and experience menstrual hygiene management, which coping strategies are applied; and what triggers the performance of a hysterectomy. A qualitative focus group study design was conducted with 69 parents and 11 special education professionals, in 14 schools and one Down syndrome clinic, in Mexico City. Data were analysed using the method of thematic analysis. The main concern of parents was how to cope with the underlying disease. They perceived menstrual bleeding positively. Their psychological distress had to do with the reproductive health of their daughters, with their wish to avoid pregnancy, and with their fear of death and leaving their daughters alone and helpless without them. None of them favoured hysterectomy. Medical indication of hysterectomy was identified as the trigger for its performance. There is an urgent need of policy development/review on best practices for hysterectomy in the females in question

Understanding the structure and practices of research ethics committees through research and audit: a study from Mexico.

This paper reports on a series of studies that were conducted at the Mexican Institute of Social Security (IMSS) between 2001 and 2002 to determine the role, structure and workings of their local research ethics committees (LRECs). The IMSS, unlike other Mexican health institutions, has a formal system of committees. Such committees operate under a regulatory system and are charged with scrutinising all research proposals in order to ensure their scientific validity and to protect the rights and well being of research subjects [Instituto Mexicano del Seguro Social. Dirección de Prestaciones Médicas (México). Manual de Investigación Médica en el IMSS: Instituto Mexicano del Seguro Social; 1999]. The organisation wanted to know how the committees were functioning and if the work of the committees needed to be improved. The problems that were encountered included issues with the composition of the committees, the process of project assessment, the continuing review process, and a lack of motivation of staff. In addition a qualitative study [Valdez-Martínez E, Turnbull B, Garduño-Espinosa J, Porter JDH. Descriptive ethics: a qualitative study of local research ethics committees in Mexico, Developing World Bioethics, 2005, in press] highlighted the focus of the committees on rules, regulations and the law with little understanding of the important individual role of members in complementing and adding to these structures and perspectives. The paper suggests that, to support staff and to protect research subjects, the organizational structure, management and decision making process of the IMSS's LRECs ought to be assessed regularly through audit cycles. In order to support the further development of the committees, the aim of the audit cycles should be focused on education and development of the vision, perspectives, values, and working processes of each LREC