Forensic uses of research biobanks: should donors be informed?

Occasional reports in the literature suggest that biological samples collected and stored for scientific research are sometimes accessed and used for a variety of forensic purposes. However, donors are almost never informed about this possibility. In this paper we argue that the possibility of forensic access may constitute a relevant consideration at least to some potential research subjects in deciding whether to participate in research. We make the suggestion that if some type of forensic access to research collections is likely to be perceived by the subjects as a reason against donating their biological materials, there are good ethical reasons to make this type of access impossible or at least severely restricted. We also provide an ethical argument for the claim that, if a total ban on this type of forensic access cannot be achieved, potential research subjects should be informed about the extent to which this type of forensic access is possible.     

Telephone social support or nursing presence? Analysis of a nursing intervention

The purpose of this qualitative analysis is to elucidate more fully telephone social support as it was delivered within the context of a randomized controlled investigation. To this end, the author used constant comparative methods to analyze telephone logs. The findings are congruent with the operational definition of social support that was selected for the randomized controlled study; however, they are also suggestive of nursing presence. Components of nursing presence that emerged from the data include (a) maintenance of psychological presence, (b) interpersonal reciprocity characterized by a mutual desire to work together, (c) therapeutic communication and full attention to the here and now, and (d) expert nursing practice within the nurse-patient dyad. Outcomes include problem solving, adaptive behavior change, and diminished distress. Researchers are encouraged to continue to use qualitative methods to define and differentiate the concepts of social support and nursing presence more clearly. This is particularly important as the demand for empirically based nursing interventions grows.     

Occupational diseases in Poland — An overview of current trends

Introduction

The number of occupational diseases (OD) recorded in Poland in the 1990’s rapidly increased, and the number of recognized cases has steadily decreased until now. Hence, it was decided to demonstrate the trends of selected pathologies which in Poland are “underestimated” in comparison to other countries. The presented data may constitute a basis for further research into the dependence of OD on socio-economic factors.

Materials and Methods

Occupational Disease Reporting Forms, completed and sent obligatorily by the state health inspectors to the Central Register of Occupational Diseases were used as source documents for analysis. This work analyzes changes in the incidence of chronic poisonings, asbestosis, voice organ diseases, cancers, viral hepatitis, asthma and the musculoskeletal disorders over the years 1998–2011.

Results

In 1998, the total number of registered diseases reached the maximum — 12,017 cases, which fell in the subsequent years to 2,562 cases in 2011. During that period, the incidence rate decreased by 6 cases per year per 100,000 employees. A considerable decrease, exceeding 90% of cases, was observed in voice organ disorders, hearing loss, chronic poisonings and viral hepatitis. The abovementioned changes, as well as improved detection of asbestos-related diseases through implementing a medical examination program of former asbestos processing plant workers, are advantages of the current situation in the epidemiology of OD. However, the disadvantages include underestimation, in comparison to other countries, of asthma, cancer and pathologies of the musculoskeletal system.

Conclusion

The reported data indicates the need to assess the occupational fraction of the underestimated pathologies present in the work environment in Poland, as well as the need for studies aimed at clarifying the effect of systemic factors on identifying their occupational background.     

Action research: a useful method of promoting change in primary care?

BACKGROUND: Action research has been used successfully to promote change in disciplines other than medicine, but there are few examples of its use in primary care. OBJECTIVE: We aimed to discuss the benefits and difficulties of using action research in primary care using the example of child health surveillance provision in general practice. METHODS: Twenty-eight general practices were randomly allocated into two groups. Action research was used to promote change in 14 practices by facilitating practice meetings and by providing written feedback. The other 14 practices received written feedback alone. The two groups of practices were compared using the following: (i) semi-structured interviews with one health visitor and GP from each practice; (ii) observation of baby clinics; (iii) questionnaires to parents; and (iv) return rates of child health surveillance reviews from the personal child health record. RESULTS: All 14 practices in the action research arm of the study met as individual practice teams and decided to make changes to their provision of child health surveillance. Ten practices audited their child health surveillance as a result. More health visitors in the action research practices than in the comparison practices reported changes to child health surveillance, audit, communication and use of the personal child health record. The majority of health visitors and GPs thought involvement in the action research process was beneficial. However, we were unable to show a statistically significant difference between the two groups of practices in baby clinic provision, parent satisfaction or the return rate of child health surveillance reviews. CONCLUSION: Our study suggests that action research is a successful method of promoting change in primary care. However, measuring the impact of change is difficult.     

Playschool in pictures: children’s photographs as a research method

The paper focuses on children’s photographs as a method to use in research with children. Studies using photographs with children are reviewed and compared and a study conducted in one Icelandic playschool is described. The playschool was involved in a project where the purpose was to look at the ways children think about their early childhood educational setting and to develop methods for listening to children’s perspectives. The paper describes and compares two approaches where cameras were used. One group used digital cameras to take pictures in their playschool while they showed the researcher important places and things in the playschool. The other group was given disposable cameras that they could use unsupervised for a period of time. The results show that using cameras and children’s photos is a notable method to use when seeking children’s perspectives on their life in an early childhood setting.     

Exploring the use of emoji as a visual research method for eliciting young children’s voices in childhood research

Recognition of the need to move from research on children to research with children has prompted significant theoretical and methodological debate as to how young children can be positioned as active participants in the research process. Visual research methods such as drawing, photography, and videography have received substantive attention in child-centred research paradigms. However, despite their increasing ubiquity in young children’s lifeworlds, technology or media-based visual materials have received little interest. This article reports on a study which used emoji as a visual research method for eliciting young children’s (aged three to five years) understandings and experiences of well-being. Findings elucidate the capacity of emoji as a visual research method for eliciting children’s voices, and considerations for its use in child research.     

Ontologies of nursing in an age of spiritual pluralism: closed or open worldview?

North American society has undergone a period of sacralization where ideas of spirituality have increasingly been infused into the public domain. This sacralization is particularly evident in the nursing discourse where it is common to find claims about the nature of persons as inherently spiritual, about what a spiritually healthy person looks like and about the environment as spiritually energetic and interconnected. Nursing theoretical thinking has also used claims about the nature of persons, health, and the environment to attempt to establish a unified ontology for the discipline. However, despite this common ground, there has been little discussion about the intersections between nursing philosophic thinking and the spirituality in nursing discourse, or about the challenges of adopting a common view of these claims within a spiritually pluralist society. The purpose of this paper is to discuss the call for ontological unity within nursing philosophic thinking in the context of the sacralization of a diverse society. I will begin with a discussion of secularization and sacralization, illustrating the diversity of beliefs and experiences that characterize the current trend towards sacralization. I will then discuss the challenges of a unified ontological perspective, or closed world view, for this diversity, using examples from both a naturalistic and a unitary perspective. I will conclude by arguing for a unified approach within nursing ethics rather than nursing ontology.     

The closure of rural hospitals in Saskatchewan: method or madness?

On April 14, 1993 the Minister of Health of the Province of Saskatchewan announced the closure of 52 of the 112 small hospitals using the criteria of: size, utilization for two consecutive years and distance to the nearest-neighbouring hospital. Amazingly, that government was re-elected. This study compared two models of reasons for hospital closure: the government criteria; and historical population, resource, and utilization factors, gathered for the year prior to closure and a decade earlier. Of the 112 small hospitals in Saskatchewan, the 10 hospitals in the frontier area were not included. Hospitals in the settled part of the province were divided into two distinct zones. The Northern zone, with 53 hospitals is characterized by rich dark soil and prosperous trade centres and the Southern zone, with 49 hospitals is characterized by light brown sandy soil and oil and gas exploration centres. Two discriminant models were developed. The government model consisted of size, two years of utilization and distance. The historical model consisted of population, resource, and utilization factors for the years 1981/1982 and 1991/1992. The dependent variable for both models was hospital status (open = 1 and closed = 0). The government model accurately predicted 91.18% of the closure decisions. The historical model had a classification accuracy of 95.10% for the whole of settled Saskatchewan, 96.23% for the Northern zone, and 95.92% for the Southern zone. The historical model was more accurate than the government model. Closing a hospital is a sad event. The manner in which the government closed nearly half of the small hospitals in Saskatchewan and gained re-election is an important account of responsible public policy. The historical model developed to examine this story takes public policy one step further in that it is possible for governments to recognize signals that indicate when communities should undertake orderly transitions in the operation of their health services facilities.     

Enterprising or altruistic selves? Making up research subjects in genetics research

The emergence of direct-to-consumer (DTC) personal genomics companies in 2007 was accompanied by considerable media attention and criticism from clinical geneticists and other health professionals, regulators, policy advisors, and ethicists. As well as offering genetic testing services, some firms are also engaged in building their own databases and conducting research with the data obtained from their customers. In this paper, we examine how one of these companies, 23andMe, is creating a certain kind of 'research subject' in opposition to that constituted in conventional forms of disease research. Drawing on debates about neoliberalism, contemporary health discourses and subjectivity, we consider two kinds of subjectivities produced through the discursive and material practices of 23andMe and UK Biobank, namely, 'enterprising' and 'altruistic' selves. We argue that the 23andMe model promotes the idea that curiosity about one's genome on the one hand, and participation in research on the other, are not only compatible but complementary aspects of being an entrepreneurial subject of contemporary health and medicine framed by the technologies of web 2.0.     

Whither RDS? An investigation of Respondent Driven Sampling as a method of recruiting mainstream marijuana users

Background  

An important challenge in conducting social research of specific relevance to harm reduction programs is locating hidden populations of consumers of substances like cannabis who typically report few adverse or unwanted consequences of their use. Much of the deviant, pathologized perception of drug users is historically derived from, and empirically supported, by a research emphasis on gaining ready access to users in drug treatment or in prison populations with higher incidence of problems of dependence and misuse. Because they are less visible, responsible recreational users of illicit drugs have been more difficult to study.     

Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?

The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural–philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research.     

Citizen training in nursing: myth or potential utopia?

The objective of this study is to verify to what extent the concepts of university, citizenship, social compromise and health system influence the nursing practice. These topics were analysed through questionnaires answered by senior nursing students. The pedagogical project of the this course was used as reference to analyse students' speech. The study showed that these prospective professionals didn't have a satisfying advance concerning their view on education, health and conception of the world. This result suggested that this pedagogical proposal has to be constantly reexamined in order to broaden students' view on the aspects mentioned. It was noticed that students' discourses were heterogeneous, and contrasted with the apparent homogeneity in the understanding of specific contents. The research highlights the dialectical movement that affects the teaching practice, which oscillates between a critical formation and Descartes' logic. It was concluded that a continuous evaluation of the educational project is a vital strategy to consolidate a formation compromised with citizenship.     

Group interviews in primary care research: advancing the state of the art or ritualized research?

BACKGROUND: Focus groups have become an important data gathering technique in primary care research. OBJECTIVES: This study provides an integrated review of recent articles that used focus groups as a data collection method to gather information from family physicians. METHODS: Medline was searched for articles that used focus groups with family physicians in a North American setting during the 1990s. Articles that met this criteria were critically evaluated to determine who participated, the number of groups conducted, setting, length, inclusion and exclusion criteria, sampling technique and whether the groups were used as part of a larger study. RESULTS: The twenty articles discussed herein revealed tremendous variation in how focus group research is conducted and reported. CONCLUSIONS: Focus group research is a popular form of qualitative research in primary care research. Journals reporting qualitative research should require that certain basic information be present, thereby advancing the state of the art and permitting readers to better evaluate these articles.     

Quality of health care services as perceived by the customers: issues of method or context?

Customer satisfaction is considered an important indicator of the quality of care. Its definition as well as the identification of the variables which affect it, rise many cultural and methodological issues. In order to give a contribution to the debate on such topics, we compared the patients' satisfaction detected before and after the transferral of the San Salvatore Hospital of L'Aquila to new and functional structures. The comparison aimed at evaluating the methodological and cultural entailments involved in customers satisfaction surveys, which focus the improvements in terms of health care as well as variation of satisfaction. The presence of contradictory elements in the expression of the satisfaction referred to the technical and informative aspects, seems to indicate that patients can express an high satisfaction degree independently from the real professional and technical quality performed. Such evidences, that anyway must be interpreted according with the methodological cautions of a non validated questionnaire, should foster stronger efforts in promoting sanitary education of the customers, devoted to the specific rights involved, as well as in making use of rigorous methodologies to detect the phenomenon.