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People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it.
History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault’s ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed — not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.
This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.
Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people’s social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of responses to older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia.
This article describes compassion as perceived within the relationship between nurses and older persons with a chronic disease. The aim of the study is to understand the benefit of compassion for nursing practice within the context of long-term care. The design of the study involves a qualitative analysis of in-depth interviews with nurses and patients in three different care-settings. Results show the nature of compassion in seven dimensions: attentiveness, listening, confronting, involvement, helping, presence and understanding. Analysis of the data also shows in what way opinions of participants relate to issues raised in a previous literature study, for example the difference between pity and compassion. The conclusion states that compassion is a valuable process which motivates patients as well as nurses to cooperate in achieving relevant outcomes of care. The discussion involves some methodological issues. For one thing, further confirmation of the dimensions found is recommended.
The purpose of this article is to shape a theoretical framework of attentiveness in care, which may function as a background to study attentiveness in a health care setting empirically. More insight into the functions, forms, and aspects of attentiveness in a particular health care setting is important, as there is a lack of indicators and criteria that enable a sharp picture of the caring side of health provision. The concept of attentiveness and its relation to care have seldom been examined thoroughly and broadly. This article argues that attentiveness is constitutive for good care, as it can create a space in which a relationship may arise.
The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a complex phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept’s dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care.
This study analysed teaching of nurses’ codes of ethics in basic nursing education in Finland. A total of 183 educators and 214 students responded to a structured questionnaire. The data was analysed by SPSS. Teaching of nurses’ codes was rather extensive. The nurse-patient relationship was highlighted. Educators assessed their teaching statistically significantly more extensive than what students’ perceptions were. The use of teaching and evaluation methods was conventional, but differences between the groups concerning the use of these methods were statistically significant. Students’ knowledge of and their ability to apply the codes was mediocre. Most educators and students assessed educators’ knowledge of the codes as adequate for teaching. These educators also taught the codes more extensively and these students perceived the teaching as more extensive. Otherwise educators’ and students’ socio-demographic variables had little association with the teaching. Research should focus on the organization and effectiveness of ethics education, and on educators’ competence.
This descriptive and cross-sectional study aims to evaluate academic dishonesty among university nursing students in Turkey. The study’s sample included 196 students. Two instruments were used for gathering data. The first instrument, a questionnaire, which included some socio-demographic variables (age, class, gender, education, family structure, parents’ attitude and educators’ attitude) formed the first part. The second part included the Academic Dishonesty Tendency Scale developed by Eminoğlu and Nartgün. The data were analyzed using descriptive statistics and Kruskall Wallis, One-way Anova, t- test and Mann-Whitney U test. It was found that academic dishonesty was at medium-level (2.60—3.39) in nursing students.
As the HIV epidemic continues to grow worldwide, women are increasingly and disproportionally affected. With the introduction of anti-retroviral medications that have been found to effectively prevent perinatal transmission of HIV, the approach to HIV testing in pregnant women has grown increasingly more controversial. In recent years, the model of voluntary counseling and testing (VCT) has come into question with opt-out testing now advocated for by the Centers for Disease Control and occurring widely in pregnancy. The benefits of opt-out testing are numerous and may justify its use in replacing the VCT that many have come to see as insufficient. An ethical analysis of opt-out testing suggests it may be at odds with true informed consent and involve a degree of coercion that would not be allowed outside the prenatal setting. If opt-out testing is going to remain the standard of care then the ethical issues it raises must be made transparent. Strategies need to be designed for ensuring that HIV counseling and testing in pregnancy is done in accordance with ethical and reproductive rights principles.



