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Methodological and ethical issues in conducting qualitative research with children and young people: a literature review.

BACKGROUND: There is an increasing interest in involving children in research that has been influenced by the recognition of children's rights and by the reconceptualisation of children within the social sciences as active agents rather than as the objects of research. OBJECTIVES: To review the methodological and ethical issues involved in conducting qualitative research with children and to consider the implications for nursing research in light of recent debates within the social sciences. DESIGN: Narrative literature review using a systematic search of computerized databases. DATA SOURCES: Published papers, key texts, reports and policy documents that relate to the methodological and ethical issues in conducting qualitative research with children. RESULTS: There are three ethical issues in relation to conducting research with children: power relations, informed consent and confidentiality. Two key methodological issues are identifiable in relation to conducting research with children. One is epistemological and relates to the different cultures of childhood and adulthood and the second relates to the heterogenous nature of childhood itself. Novel techniques and task-based activities are being increasingly used to establish rapport and as a method of data collection. CONCLUSION: There are both differences and similarities in conducting qualitative research with children and with adults but often the similarities have been overlooked and the differences overstated. Nursing and other health-related researchers conducting research with adults could learn much from children's researchers, particularly in terms of sensitivity to ethical issues. Nursing research need to consider the methodological issues that have been debated in the social sciences and to critically reflect on the use of novel techniques in qualitative research.

Adolescent↗

Sustaining safe practice: twenty years on.

This paper examines the ways in which populations at risk of HIV in the developed world have enculturated the knowledges and technologies of both the medical and the social sciences. By revisiting a number of review papers and by reviewing findings from a range of studies, we argue that gay men have appropriated information that has enabled them to sustain safe practices while they have eschewed information that has made maintenance difficult. The paper describes a range of risk reduction strategies and compares the responses of populations at risk of HIV in the years before the advent of highly active antiviral therapy (HAART) with their responses after the introduction of HAART in 1996. We concentrate our argument on the changing responses to HIV risk of gay men, although occasionally illustrate our argument with reference to the responses of injecting drug users. The responses of gay men to risk post-HAART--particularly those who reside in Australia--speak to the adoption of a range of considered strategies, not altogether safe, to reduce harm. We argue that such strategies need to be understood and addressed within a 'new' social public health, that is, a public health that takes what social analysis has to say seriously. The paper examines the differences between the traditional, the 'modern' epidemiological/clinical and the 'new' social or socio-cultural public healths and describes the tensions between the medical and the social science disciplines in their efforts to inform public health. Key concepts provided by social science such as agency (including individual and collective agency), alongside its methodological reflexivity are key to effective public health. The risk avoidance strategies adopted by gay men suggest a way forward by turning our attention to the ways in which medicine is taken in(to) their practice.

Antiretroviral Therapy, Highly Active↗

A suitable case for Technik: behavioural science in the postgraduate medical curriculum.

The role of the behavioural and social sciences in the postgraduate medical curriculum is considered. It is argued that the behavioural and social sciences can play a vigorous and dynamic part both in medical education and in medical practice. However, in order for that role to be achieved a Technik approach must be adopted. Technik means an emphasis on know-how, capability and on unifying theory and practice. It is suggested that the behavioural sciences frequently fail to excite interest because they adopt only a humanistic and/or critical approach at the expense of the needs of medical training. Some examples of a Technik approach drawn from health education, the management of chronic disease and surgical audit are briefly examined.

Behavioral Sciences↗

Controversy and the Rasch model: a characteristic of incompatible paradigms?

The development of Rasch models in educational and psychologic measurement in the 1960s coincided with the introduction of other similar models, now described as models of item response theory (IRT). The application of IRT models has now extended to other social sciences, including health. Originally, there was substantial controversy between those who saw Rasch models as simply special cases of IRT models and those who saw them as essentially different. Because these different perspectives continue to manifest themselves in various ways, it seems relevant to understand the source of the original controversy. This paper attempts to do so by invoking Kuhn's studies in the history and philosophy of science at 3 levels. First, it suggests that the 2 perspectives reflect Kuhn's concept of legitimate, incompatible paradigms in which controversy is a typical manifestation. Second, because Kuhn recognizes individual histories in the development of paradigms, Rasch's own shift in perspective is summarized. Third, because proponents of the Rasch models emphasize the models' compatibility with fundamental measurement found in physical science, an analogy is made between how Kuhn explains the role of measurement in the physical sciences and how proponents of Rasch models explain the role of these models in the social sciences. In particular, these roles cannot be gleaned from textbooks in science and statistics, respectively.

Education↗

Directions and issues in psychosocial research and methods as applied to cleft lip and palate and craniofacial anomalies.

Psychosocial research into cleft lip and/or palate and craniofacial conditions has historically employed a "medical model" of research that sought to clarify whether patients experienced psychopathology as a consequence of the birth defect. In recent years, this paradigm has been replaced by a "social science model" of research that posits that most individuals with clefts do not manifest psychological pathology. The "social science model" examines adjustment and adaptation in the patients and their families. Research questions may consider the social, cultural, and psychological ramifications of being different in terms of speech, appearance, or identity. The authors suggest that an expanded set of research questions be considered, and that researchers from sociology, anthropology, ethics, economics, health services research, as well as psychology, become engaged. This paper proposes a range of possible research topics and indicates likely trends in research design and methodology.

Cleft Lip↗

Consensus functions and patterns in molecular sequences.

In recent years, methods of consensus, developed for the solution of problems in the social sciences, have become widely used in molecular biology. We study a method of consensus originally due to Waterman et al. (Waterman, Galas and Arratis. 1984. Pattern recognition in several sequences: consensus and alignment. Bull. math. Biol. 46, 515-527) which is used to identify patterns or features in a molecular sequence where a pattern can vary in position within a given window. We show that some well-known consensus methods of the social sciences, the median and the mean, are special cases of this method for certain choices of the parameters used in it and give a precise account of the parameters for which these special cases arise. We also show that the specific parameters used in the method of Waterman et al. make their method equivalent to the media procedure which is widely used in the social sciences.

Base Sequence↗

Science and social justice: the lessons of HIV/AIDS activism in the struggle to eradicate tuberculosis.

The global social, political and health emergency presented by the human immunodeficiency virus and the acquired immune-deficiency syndrome (HIV/AIDS) has also once again propelled tuberculosis (TB) into a global public health emergency. The examples I will use to show how activism and social mobilisation can assist in overcoming TB are primarily from my home country, South Africa. Despite significant differences in health systems, culture, politics and history, there are lessons that could be used to advocate for TB prevention, diagnosis, treatment and care globally. Our country experiences globally significant HIV and TB epidemics. I will return to the epidemiology of TB-HIV and the crisis of illness and death. Early in April 2005, one of my closest friends, Ronald Louw, a professor of law at the University of KwaZulu-Natal, a human rights lawyer and activist for more than 25 years, suffered a persistent fever and cough. While on sabbatical, he was taking care of his mother who had been diagnosed with cancer. He assumed his illness was stress-related and went to a doctor who diagnosed bronchitis. After 4 weeks' treatment with antibiotics, his illness was worse-he had a raging fever, night sweats and was becoming disoriented. He requested an HIV test. Within 24 hours Ronald Louw knew that he had been infected with HIV. His mother died on the same day. He also knew within 24 hours that his CD4 count was below 100. They could not diagnose his lung disease and concluded that it was Pneumocystis carinii pneumonia. Four weeks later his doctors diagnosed TB through a lung biopsy. Ronald Louw had been desperately sick under medical care with TB and HIV for more than 8 weeks. He died 3 days after receiving a definitive TB diagnosis, and a week after treatment for presumptive TB had commenced.

Acquired Immunodeficiency Syndrome↗

Taking STOX: developing a cross disciplinary methodology for systematic reviews of research on the built environment and the health of the public.

STUDY OBJECTIVE: To develop a cross disciplinary literature search methodology for conducting systematic reviews of all types of research investigating aspects of the built environment and the health of the public. DESIGN: The method was developed following a comprehensive search of literature in the area of housing and injuries, using 30 databases covering many disciplines including medicine, social science, architecture, science, engineering, environment, planning and psychology. The results of the database searches, including the type (or evidence) of research papers identified, were analysed to identify the most productive databases and improve the efficiency of the strategy. The revised strategy for literature searching was then applied to the area of neighbourhoods and mental health, and an analysis of the evidence type of references was carried out. In recognition of the large number and variety of observational studies, an expanded evidence type classification was developed for this purpose. MAIN RESULTS: From an analysis of 722 citations obtained by a housing and injuries search, an overlap of only 9% was found between medical and social science databases and only 1% between medical and built environment databases. A preliminary evidence type classification of those citations that could be assessed (from information in the abstracts and titles) suggested that the majority of intervention studies on housing and injuries are likely to be found in the medical and social science databases. A number of relevant observational studies (10% of all research studies) would have been missed, however, by excluding built environment and grey literature databases. In an area lacking in interventional research (housing/neighbourhoods and mental health) as many as 25% of all research studies would have been missed by ignoring the built environment and grey literature. CONCLUSIONS: When planning a systematic review of all types of evidence in a topic relating to the built environment and the health of the public, a range of bibliographical databases from various disciplines should be considered.

Databases, Bibliographic↗

Ethical, legal, and social dimensions of epilepsy genetics.

PURPOSE: Emerging genetic information and the availability of genetic testing has the potential to increase understanding of the disease and improve clinical management of some types of epilepsy. However, genetic testing is also likely to raise significant ethical, legal, and social issues for people with epilepsy, their family members, and their health care providers. We review the genetic and social dimensions of epilepsy relevant to understanding the complex questions raised by epilepsy genetics. METHODS: We reviewed two literatures: (a) research on the genetics of epilepsy, and (b) social science research on the social experience and social consequences of epilepsy. For each, we note key empiric findings and discuss their implications with regard to the consequences of emerging genetic information about epilepsy. We also briefly review available principles and guidelines from professional and advocacy groups that might help to direct efforts to ascertain and address the ethical, legal, and social dimensions of genetic testing for epilepsy. RESULTS: Genetic information about epilepsy may pose significant challenges for people with epilepsy and their family members. Although some general resources are available for navigating this complex new terrain, no guidelines specific to epilepsy have yet been developed to assist people with epilepsy, their family members, or their health care providers. CONCLUSIONS: Research is needed on the ethical, legal, and social concerns raised by genetic research on epilepsy and the advent of genetic testing. This research should include the perspectives of people with epilepsy and their family members, as well as those of health care professionals, policymakers, and bioethicists.

Attitude to Health↗

[Minimum requirements for the establishment of medical schools. Division of human resources and investigation. PAHO/WHO].

This paper was presented as a reference document for the Working Group on the subject that met at Salvador, Bahia, Brazil, in December 1977, for the purpose of analyzing the recommendations presented in the report on Basic Principles for the Development of Medical Education in Latin America and the Caribbean Area, and to consider the proposed alternative ways of implementing them. It provides an introduction to each of the main topics that were to be considered by the Working Group, namely: socioeconomic aspects, health practices and the training of medical manpower; the inter-relations between the educational process and health services; institutional and program characteristics of institutions that produce physicians. It also refers to the efforts that have been going forward in the last few years in some physician-training centers, in the form of innovative projects for the teaching of medicine, including early participation of the student in the health practice and his incorporation into the various levels of care; the development of processes for the integration of teaching and service, and, in some cases, of teaching, service, and research; interdisciplinary coordination; the striking of a balance between the biological and social sciences; and further emphasis on study of the social sciences in their applications to the health-illness process.

Education, Medical↗

[Comparative study of the attitudes of students and nurses to physician-assisted suicide--first results].

While the popular media and the professional literature deal with the topic of euthanasia intensively, the problems of physician-assisted suicide received insufficient attention in Hungary. The authors review the most important details of the physician-assisted suicide. A twelve-item scale to measure attitude toward PAS (constructed and validated by G. Domino) was administered to the samples of Hungarian social science, medical students and nurses. The distributions of responses for the 12 items for the social and medical samples are compared and discussed. Also a cross-cultural comparison was made with an American student sample examined by Domino. The social science students who have the fewest personal experiences with serious, or terminally ill patients are the most liberal group, characterised by the most permissive attitudes toward PAS. Nurses who have everyday contact and experience with these patients are the most conservative; they show more or less conclusively the lowest acceptability rate of PAS. The attitudes of medical student's group, of the would-be physicians are between them, and they are the most controversial and ambivalent. Future research is necessary to get more information about attitudes toward physician-assisted suicide.

Adult↗

Critical realism as emancipatory action: the case for realistic evaluation in practice development.

To provide rigour when preparing a research design, the researcher needs to carefully consider not only the methodology but also the philosophical intent of the study. This, however, is often absent from reported research and provides the reader with little evidence by which to judge the merits of the chosen methodology and its influence on the study. The purpose of this paper is to set out the case for critical realism as a framework to guide appropriate action in practice development and realistic evaluation for understanding the consequences of those actions. It is evident that critical realism and critical social science share common ground. Emancipatory practice development (ePD) is based on the philosophy of critical social science and therefore by virtue is linked to the tenets of critical realism. Until now, the evaluation of ePD programme has been well served by 4th-generation evaluation. However, this paper outlines the need for a different approach to evaluation, one that is based on critical realism, that is concerned with emancipation, and that can be used in the ever-changing environment of clinical practice. Realistic evaluation not only links strongly to ePD programmes, but also serves as the basis for effective research questions that will test the outcomes of the research and inform the transferability of ePD mechanisms into differing contexts.

Attitude of Health Personnel↗

Misinterpretive phenomenology: Heidegger, ontology and nursing research.

This paper argues that Heidegger's phenomenology does not have the methodological implications usually ascribed to it in nursing literature. The Heidegger of Being and Time is not in any sense antagonistic to science, nor does he think that everydayness is more authentic, more genuine, than scientific enquiry or theoretical cognition. It is true that social science must rest on interpretive foundations, acknowledging the self-interpreting nature of human beings, but it does not follow from this that hermeneutics exhausts all the possibilities. Positivist approaches to social science are certainly inconsistent with Heidegger's ontology, but realist approaches are not and structuration theory, in particular, can be seen as a sociological translation of his ideas. Social enquiry in nursing is not therefore confined to studies of lived experience. Indeed, lived experience research constitutes not a realization, but rather a betrayal, of Heidegger's phenomenology, being thoroughly Cartesian in spirit.

Existentialism↗

Test scores, measurement, and the use of analysis of variance: an historical overview.

In order to establish a firmer statistical foundation from which to draw inferences from factorial design study data, transformations of raw scores are occasionally employed in order to make their distributions more generally normal or to provide linearity. To date, few studies have been conducted to determine whether or not raw scores transformed or otherwise constitute measures for the purposes of statistical analysis. In this article, the historical development of the understanding of the term "measurement" by researchers in the social sciences is traced, and the development and use of One and Two-way ANOVA by researchers in the social sciences are presented and evaluated.

Analysis of Variance↗

Forced movements of population and health hazards in tropical Africa.

Significant interactions between disease and population mobility have been demonstrated in tropical Africa in recent decades. Problems arising are greater than in the past. During the last two decades forced movements have become important. These are associated with refugees, coerced resettlement and victims of environmental catastrophe. The health hazards associated with them are reviewed from medical and social science literature for North East Africa (refugees and resettlement) and for West Africa (pastoralists affected by drought). Political, social and economic settings are of importance but tend to receive only limited attention. There is need for more social science input in studying and ameliorating problems arising from health hazards associated with and exacerbated by forced movements of population.

Africa, Western↗

Use of social and behavioral sciences by public health departments in major cities.

Individual behavior and social contexts are critical determinants of health. We surveyed commissioners or their designees in 22 departments of health serving US cities of at least 500,000 people to examine their use of scientific approaches to influence individual behavior and social contexts. Each department used behavioral or social science in its work, but only four departments were judged to have integrated these approaches throughout their operations, using both centralized and decentralized structures. Degree of integration was unrelated to collaboration with universities or communities but was related to use of explicit theories. Behavioral and social sciences were employed most frequently in the areas of HIV/AIDS and maternal and child health and in the service of changing individual behavior rather than larger contexts, although across departments many health problems and approaches were involved. Commissioners generally found the approaches valuable, but articulated barriers to more widespread adoption.

Behavioral Sciences↗

Scientific racism: reflections on peer review, science and ideology.

The scholars who use Social Science & Medicine in their research and teaching, who publish their work in it, participate in its peer review of manuscripts, and attend its conferences belong to various nationalities, disciplines, and cultural traditions. Our common enterprise originated in and depends upon liberal democratic social institutions, and assumes their values. With all our differences and disagreements, we are committed to scientific research in a common effort to improve human health and welfare. Our professional careers are a large part of our personal lives, so that our science, our lives, and our values are a single fabric. The present lecture is a meditation on this situation based upon my own heritage, personal experience, and career in anthropology, and on the recent publication in Social Science & Medicine of an essay that attributed the epidemiology of AIDS to racial variation.

Acquired Immunodeficiency Syndrome↗

What is special about the ethical issues in online research?

In the analysis of the ethical problems of online research, there is much to be learned from the work that has already been done on research ethics in the social sciences and the humanities. I discuss the structure of norms in the Norwegian ethical guidelines for research in the social sciences with respect to their relevance for the ethical issues of Internet research. A four-step procedure for the ethical evaluation of research is suggested. I argue that even though, at one level, the problems of online research are very similar to those we find in traditional areas of scientific research, there still are some issues that are unique to research online. A general model for the analysis of privacy and data protection is suggested. This model is then used to characterize the special problems pertaining to the protection of privacy in online contexts, and to argue that one cannot assume a simple distinction between the private and the public when researching in such contexts.

Advisory Committees↗