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PubMed2001

Prenatal screening, ethics and Down's syndrome: a literature review.

This article reviews the literature on prenatal screening for Down's syndrome. To be evidence based, medicine and nursing have to take account of research evidence and also of how this evidence is processed through the influence of prevailing social and moral attitudes. This review of the extensive literature examines how appropriate widely-held understandings of Down's syndrome are, and asks whether or not practitioners and prospective parents have access to the full range of moral arguments and social evidence on the matter. Highly valued ideals of justice, personal autonomy, parental choice, women's control over their reproduction and of avoiding harm can all tend towards negative rather than neutral approaches to Down's syndrome. This article considers how ethics and prenatal screening policies and practice that take greater account of social evidence of disability could use moral arguments that inform rather than determine the choices of people who use prenatal services.

Bioethical Issues↗
PubMed1997

Ethical aspects of phenomenological research with mentally ill people.

Given the dramatic rise in the frequency of nursing research that involves eliciting personal information, one would expect that attempts to maintain the balance between the aspirations of researchers and the needs and rights of patients would lead to extensive discussion of the ethical issues arising. However, they have received little attention in the literature. This paper outlines and discusses some of the issues associated with qualitative research. The discussion converges on the specific case of phenomenological research, which involves the invasion of participants' personal worlds, and draws attention to some of the ethical issues that arise when the participants are psychiatric patients.

Behavioral Research↗
PubMed2004

Continuity of the self in later life: perceptions of informal caregivers.

The authors explore perceptions of informal caregivers of extremely elderly (80+) relatives or friends regarding the purpose of caregiving, including factors they considered important for the life satisfaction of the care recipients. They collected data mainly through qualitative interviewed and employed symbolic interactionism. The results revealed a general purpose of the informal caregiving: protection of the care recipient's self. This purpose was a significant aspect of the identified caregiving categories--social-emotional, proxy, and instrumental care--and the authors consider all four factors important for the care recipients' life satisfaction: activity, independence, and environmental and adaptive factors. Some informal caregivers gave forceful encouragement to care recipients in an attempt to get them to accept formal care and move to sheltered accommodation. This study underscores the value of informal caregiving and that the caregiving interaction should be balanced by reciprocity.

Activities of Daily Living↗
PubMedDate not supplied

Hospice care or assisted suicide: a false dichotomy.

In this paper, the author argues that making assisted suicide available is not a contradictory position to espousing hospice care. He draws on historical and political examples to explain the ethical basis for this assertion. By defining the issue at stake as one of personal autonomy (the loss or gain thereof), the author challenges the argument that making assisted suicide available leads to a slippery slope towards euthanasia, eugenics, or genocide. He asserts that narrowing choices by preventing people from seeking assistance in suicide is more likely to lead us down the slippery slope towards coercive medical and state intervention in our lives.

Attitude to Death↗
PubMed2006

Examining exercise dependence symptomatology from a self-determination perspective.

Background Pulling from Self-Determination Theory (SDT; Deci & Ryan, 1985), this study examined whether individuals classified as 'nondependent-symptomatic' and 'nondependent-asymptomatic' for exercise dependence differed in terms of reported levels of exercise-related psychological need satisfaction, self-determined versus controlling motivation and exercise behavior. In addition, we examined the type of motivational regulations predicting exercise behavior among these different groups, and their role as mediators between psychological need satisfaction and behavioral outcomes. Methods Participants (N = 339) completed measures of exercise-specific psychological need satisfaction, motivational regulations, exercise behavior and exercise dependence. Results Nondependent-symptomatic individuals reported higher levels of competence need satisfaction and all forms of motivational regulation, compared to nondependent-asymptomatic individuals. Introjected regulation approached significance as a positive predictor of strenuous exercise behavior for symptomatic individuals. Identified regulation was a positive predictor of strenuous exercise, and completely mediated the relationship between competence need satisfaction and strenuous exercise behavior, for asymptomatic individuals. Conclusions The findings reinforce the applicability of SDT to understanding the quantity and quality of engagement in exercise.

Adolescent↗
PubMed2001

125 years of public health in the UK.

This paper examines four themes in public health theory and practice: all are important for the future and are illuminated by the last 125 years. First, while definitions of public health may be stable, the rationale of public health practice--'why bother?'--has altered considerably over time. A second theme revolves around personal autonomy--can we compel individuals to take health promoting measures? Third, public health practice today pays attention as never before to the use of research-based evidence, helping to answer three questions: What are the problems? What are their causes? What are the solutions? The fourth theme is the changing character, locus and focus of public health. From being predominantly locally focused within Borough Councils, albeit operating within frameworks of national legislation and one eye on global threats, it has become much more complex with emerging levels of action which encompass the neighbourhood, the strategic district, the region, nation state, Europe and finally the ever more pressing globalisation agenda as it affects the human condition. Public health has been medically dominated for the last 125 years and this is now changing. Its ties with local government are being strengthened after a break of nearly 30 years. The focus of public health has recently been strongly on health services. This reached its apogee a few years ago but is also now rapidly changing. Looking back over the last 125 years can help us identify some of the mistakes to be avoided and opportunities to be seized at this time of change.

Delivery of Health Care↗
PubMed2005

Empowerment and the architecture of rights based social policy.

This article considers what the notions of empowerment, rights and citizenship imply in the way of structures and policies. It argues that a coherent model is emerging with recognizable elements. The article begins with a brief discussion of some background and theoretical questions. It then examines four elements: support for people to articulate their claims; support for people to identify, obtain and manage supports necessary to actualize their claims; providing control over resources; and governance. Examples will be drawn primarily from the UK and British Columbia, Canada to illustrate the elements. The article then looks at some of the issues related to successful implementation of a rights or empowerment based model of policy and structures for supporting people labelled as having a learning disability.

Adult↗
PubMed2005

Empowerment, self-advocacy and resilience.

This article critiques the relationship between the aims of 'learning disability' policy and the realities of the self-advocacy movement. A previous study found that self-advocacy can be defined as the public recognition of the resilience of people with learning difficulties. In the current climate of Valuing People, partnership boards and 'user empowerment', understanding resilience is crucial to the support of authentic forms of self-advocacy. This article aims to address such a challenge. First, understandings of resilience in relation to self-empowerment and self-advocacy are briefly considered. Second, the current policy climate and service provision rhetoric are critically explored. Third, it is argued that we need to recognize how self-advocacy groups celebrate resilience through a variety of social and identity-shifting actions. How current policy responds to these aspects of resilience is questioned. It is concluded that the lived reality of self-advocacy needs to be foregrounded in any attempt to understand empowerment.

Adaptation, Psychological↗
PubMed2006

Violence and exploitation against women and girls with disability.

This article seeks to explore issues concerning women and girls with disability who have experienced violence and exploitation. Owing to different methodologies of data collection, it is difficult to precisely determine the exact number of women and girls who are affected. The literature suggests that violence and exploitation against women and girls with disability occur at a rate 50% higher than in the rest of society. It also points out a number of additional critical issues: professionals are uneducated nd insensitive to the needs of these populations; increasing numbers of women and girls living with disability exacerbate the problem; women and girls with disability are uneducated about their rights and responsibilities; and action must be taken to halt this epidemic.

Adolescent↗
PubMed1995

The limits of empirical studies on research ethics.

The results of empirical research in psychology and psychiatry are increasingly being used to formulate as well as understand problems at the interface of law and psychiatry. There has been a proliferation of studies, such as the determinants of individual competence or threat to self or others, the results of which are influencing policy and legislative decisions as well as buttressing holdings in court cases. In this article, I explore the issues of interpretation of epidemiological studies, particularly the role of ideological positions on the design and results of empirical findings, the importance of the way data are interpreted, and the role of ideologies in the way research findings are presented to provide support for policy positions. Two levels of analysis are involved in determining the validity of a study. The first addresses the questions of whether the study meets the statistical and epidemiological requirements for reliable results. These include considerations such as the appropriateness of the study design and methods for gathering and interpreting data. The second focuses on the underlying framework of the study. This involves factors such as the perspectives and values of those conducting the study, the explicit and implicit dominating ideologies where they operate, and the extent to which the study is constructed to reaffirm specific ideologies. This level of analysis is essential for disclosing the influences of ideologies on the results of studies and the way in which data are interpreted. In this article, I try to demonstrate through critiques of selected studies that the first stage of analysis is insufficient without an examination of underlying preconceived values to establish the meaningfulness of results.

Aged↗
PubMed1998

Vulnerability: reflection on its ethical implications for the protection of participants in SAMHSA programs.

The vulnerability of participants in Substance Abuse and Mental Health Services Administration (SAMHSA) programs is a consequence of the illnesses that they are experiencing; ethical guarantees must be in place that ensure the dignity of the persons involved in such programs. Dignity is more than an individual concern; it has individual, institutional, and societal dimensions. An ethical framework is proposed that involves the interrelated vulnerabilities and needs of individuals and communities and our societal response to them. Among the issues given particular attention are individual and community stigmatization, target population involvement in program planning, balance with regard to confidentiality and privacy, the place of proportionality grounded in a rich sense of community as a guiding ethical priniciple, and guidelines for SAMHSA programs.

Alcoholism↗
PubMed1991

Sources of countervailing power in medicine.

In recent years a substantial literature has emerged on the alleged deprofessionalization and proletarianization of physicians. The contention is that corporatization is transforming the practice of medicine, divesting physicians of control over many features of their work, consistent with the needs of advanced capitalism. I examine the hypothesis skeptically, differentiating between the cultural role of medicine, the political and social legitimacy of medical concepts, and the personal autonomy of the individual physician. I suggest that while physicians are less autonomous than they used to be, the constraints imposed on them fall within a medical paradigm. From a cultural or social perspective, medicine is more central to the economy and more powerful than ever before. As its centrality and importance increase, there is more at stake, and interests compete more aggressively. I conclude that there is little evidence in support of the hypothesis.

Attitude of Health Personnel↗