Browsing by Author "Thomas, Carol"

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    Do disabled people need a stronger social model – a social model of human rights?
    (Taylor and Francis, 2019-06-01) Berghs, Maria; Atkin, Karl; Hatton, Chris; Thomas, Carol
    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 (UPAIS). 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 that enables and ensures their rights; the right to live a dignified life, as well as live in an environment that enables people to flourish with disability.
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    Implications for public health research of models and theories of disability: A scoping study and evidence synthesis
    (NIHR, 2016-07) Thomas, Carol; Hatton, Chris; Graham, Hilary; Atkin, K.; Berghs, Maria
    Background: Public 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 methods: The 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. Results: The 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. Limitations: The scoping review provides a broad appraisal of a particular field. It generates ideas for future practice rather than a definite framework for action. Conclusions: Our 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 work: Developing 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.
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    Policy Briefing: Implementing empirical ethics and rights - IDEAS for ensuring disability equity in research
    (2019-03-01) Berghs, Maria; Atkin, Karl; Hatton, Chris; Thomas, Carol
    In this policy briefing, we illustrate the development and potential of tools developed from commissioned public health research project where empirical ethics was combined with human rights to elucidate a critical framework for conducting and evaluating Randomised Controlled Trials (RCTs) in public health and disability
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    Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people
    (Taylor and Francis, 2017-06-24) Berghs, Maria; Atkin, Karl; Graham, Hilary; Hatton, Chris; Thomas, Carol
    Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.
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    Rights to Social Determinants of Flourishing: A Paradigm for Disability and Public Health Research and Policy
    (BioMed Central, 2019-07-24) Berghs, Maria; Atkin, Karl; Hatton, Chris; Thomas, Carol
    Background: The term evidence based medicine (EBM) was introduced in the early 1990s in clinical medicine to educate clinicans about how to assess the ‘credibility’ of research to ensure best treatments for their patients. The EBM paradigm has become more diffuse in times of austerity and randomised controlled designs (RCTs) are being used to address complex issues in public health and disability research. This research is not addressing inequalities in terms of diisability nor how people can live well with disabilities. Main text: We argue that there are four ways that public health research needs to change if it wants to address inequalities linked to disability: 1) rethinking theoretical connections between public health and disability; 2) building ethics and equity into interventions through a human rights approach; 3) ensuring ethical inclusion through intersectionality; and 4) evaluating policy and other social impacts to ensure they capture diversity. We argue that these are key issues to building a social determinants of flourishing. Conclusions: We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly RCTs and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing.