BackgroundPublic health interventions that are effective in the general population are often assumed to apply to people with impairments. However, the evidence to support this is limited and hence there is a need for public health research to take a more explicit account of disability and the perspectives of people with impairments.Objectives(1) To examine the literature on theories and models of disability; (2) to assess whether or not, and how, intervention studies of effectiveness could incorporate more inclusive approaches that are consistent with these theories and models; and (3) to use the findings to draw out implications for improving evaluative study designs and evidence-based practice.Review methodsThe project is a scoping review of the literature. The first stage examines theories and models of disability and reflects on possible connections between theories of disability and public health paradigms. This discussion is used to develop an ethical–empirical decision aid/checklist, informed by a human rights approach to disability and ecological approaches to public health. We apply this decision aid in the second stage of the review to evaluate the extent to which the 30 generic public health reviews of interventions and the 30 disability-specific public health interventions include the diverse experiences of disability. Five deliberation panels were also organised to further refine the decision aid: one with health-care professionals and four with politically and socially active disabled people.ResultsThe evidence from the review indicated that there has been limited public health engagement with theories and models of disability. Outcome measures were often insensitive to the experiences of disability. Even when disabled people were included, studies rarely engaged with their experiences in any meaningful way. More inclusive research should reflect how people live and ‘flourish’ with disability.LimitationsThe scoping review provides a broad appraisal of a particular field. It generates ideas for future practice rather than a definite framework for action.ConclusionsOur ethical–empirical decision aid offers a critical framework with which to evaluate current research practice. It also offers a resource for promoting more ethical and evidence-based public health research that is methodologically robust while being sensitive to the experiences of disability.Future workDeveloping more inclusive research and interventions that avoid conceptualising disability as either a ‘burden’ or ‘problem’ is an important starting point. This includes exploring ways of refining and validating current common outcome measures to ensure that they capture a diverse range of disabling experiences, as well as generating evidence on meaningful ways of engaging a broad range of disabled children and adults in the research process.FundingThe National Institute for Health Research Public Health Research programme.
In this literature review, a picture is given of the complexity of nursing attitudes toward euthanasia. The myriad of data found in empirical literature is mostly framed within a polarised debate and inconclusive about the complex reality behind attitudes toward euthanasia. Yet, a further examination of the content as well as the context of attitudes is more revealing. The arguments for euthanasia have to do with quality of life and respect for autonomy. Arguments against euthanasia have to do with non-maleficence, sanctity of life, and the notion of the slippery slope. When the context of attitudes is examined a number of positive correlates for euthanasia such as age, nursing specialty, and religion appear. In a further analysis of nurses’ comments on euthanasia, it is revealed that part of the complexity of nursing attitudes toward euthanasia arises because of the needs of nurses at the levels of clinical practice, communication, emotions, decision making, and ethics.
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people's human rights. Disabled people need a stronger social model that acts as a means to a society which enables and ensures their rights; the right to live a dignified life, as well as to live in an environment that enables people to flourish with disability.
Fathers are increasingly invited to take part in antenatal care of which screening for sickle cell trait is a part. Expectations about involvement reflect changing perceptions of fatherhood and negotiation of gendered identities. Current policy supports male involvement, but is less clear on what basis and with what consequences. In exploring this, our qualitative study, using semi-structured interviews, presents the experiences of fathers who have recently undergone antenatal screening for sickle cell. The sample was generated in discussion with eight non-governmental organisations. We recruited 24 fathers from nine UK cities. Our analysis outlines the importance of 'presence', in which fathers rely on nurturing definitions of fatherhood to display their sense of responsibility. Fathers, however, struggled to find a meaningful role as traditional masculinities became juxtaposed with new and complex forms of gender organisation, creating the potential for estrangement. To conclude, screening policy makes an appeal to emergent masculinities. It also generates risks and compromises choice, due to the normative values implicit in the screening process, reinforced by the more controlling aspects of health surveillance. This creates confusion among fathers, who are not sure why they have been invited into the antenatal space.
Background: Southern African scholars and activists working in disability studies have argued that ubuntu or unhu is a part of their world view. Objectives: Thinking seriously about ubuntu, as a shared collective humanness or social ethics, means to examine how Africans have framed a struggle for this shared humanity in terms of decolonisation and activism. Method: Three examples of applications of ubuntu are given, with two mainly linked to making explicit umaka. Firstly, ubuntu is linked to making visible the invisible inequalities for a common humanity in South Africa. Secondly, it becomes correlated to the expression of environmental justice in West and East African countries. Results: An African model of disability that encapsulates ubuntu is correlated to how Africans have illustrated a social ethics of a common humanity in their grassroots struggles against oppression and disablement in the 20th century. Ubuntu also locates disability politically within the wider environment and practices of sustainability which are now important to the post-2105 agenda, Convention on the Rights of Persons with Disabilities (CRPD) and the (UN) Sustainable Development Goals linked to climate change. Conclusion: A different kind of political action linked to social justice seems to be evolving in line with ubuntu. This has implications for the future of disability studies.
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