maximises health benefits and ensures that mainstream
research reflects the experiences of people with disabilities?
Overcoming the short-term initial difficulties of inclusion by excluding disabled people can have
consequences for achieving long-term public health benefits. Our review noted the lack of‘methodological congruence’between the theoretical paradigms used and public health research.612Quality assessments
of systematic reviews, for example, largely concentrate on methodological checks, including discussions of inclusion or exclusion criteria, bias or confounding, rather than on theoretical assessments of the paradigms, definitions or measures being used and how these might relate to the strengths and relevance of the methodological design.613,614As we have mentioned, functioning and well-being are often conflated, as is
QoL and HRQoL, and the relationship between well-being and health utility is poorly articulated. This is where more critical models of disability could be useful, along with the use of our proposed decision aid. We have already noted how different models and theories of disability raise questions about the extent to which different measures can capture the different disabling experiences and the implications of this for the validity and reliability of the evidence presented.172,439Our scoping review indicates how
measures often represent disability, although sometimes subtly, in a negative way, associating it with cost and burden or predicating it on the grounds of able-bodied norms. To this extent, they appeared aligned to professional dominance and paternalism, viewed people as their impairments and relied on a terminology which could be regarded as pejorative. However, an interest in‘capability’measures and indicators has begun to challenge such thinking79,155,615or take it in new directions.413,566
Public health interventions are increasingly moving into welfare, vulnerability and risk.616This is also part of
the more holistic approach to public health and the commitment to inequalities, as we have previously noted. In this way discourses on risk and resilience to risks (global and individual) become interlinked. However, measures commonly used in public health research are little informed by these debates.
Furthermore, our scoping review noted a difference in some studies on health promotion between a (bio) medical model understanding of the intersections between health and disability and a person’s perceived health and QoL.64,617This is known as the
‘disability paradox’and raises important questions for public health research.618Interventions that rely on medical models may not reflect the extent to which those
with impairments can continue to have a positive QoL. A disability, for example, might have several secondary causes that can cause pain or mental distress. Nonetheless, an individual might still feel that they have a good QoL because of the social resources available to them.619
Although ageing is a normal part of the life-course, it has to be distinguished from secondary conditions, such as mental health issues or impairment(s), that have a negative effect on health. Similarly, a person can be born with a congenital disability but can also have serious health and mental health needs which may or may not have a link to impairment. The use of outcome measures can seem disjointed, especially when disability is viewed as a speciality rather than a mainstream issue. If disability is something that potentially affects everyone across the life-course, then outcome measures will have to change to take this
into account.
Recognising the broader determinants (social, political and economic) of health would also facilitate a more inclusive research practice, able to locate an individual’s experience within his or her social environment. This is a timely reminder that public health might need to create more enabling measures that can capture the diversity of the disabling experience and are sensitive to individual circumstances, the effects of the life-course and the impact of intersectionality. This could also assume political relevance by empowering people to live well, thrive or‘flourish’with impairment(s).152,153,620,621The idea of
‘flourishing’ seemed to connect especially well with more affirmative and holistic models of disability. Within this context, to flourish means to thrive. It encompasses ideas of health and well-being that are inclusive of disability. The word flourish also takes a broader and perhaps different ontological and epistemological approach to public health, in which the starting point would be interventions to ensure that people are aided to live well with disability and impairment across the life-course. The understanding of‘flourish’ also encompasses elements of distinction, which are connected to social and political empowerment. Empirically, this could be translated into measures of societal status/standing, societal accessibility/inclusion or social enablement/emancipation.622,623Social sustainability measures indicators are available to facilitate
this, but currently they have no connection to disability.
Conclusion
Our proposed decision aid, IDEAS, offers a capacity-building and evaluative aid that can both educate and provide an indicator of equity when analysing reviews. In proposing it, we are nonetheless aware of the importance of combining more inclusive research practices with methodologically robust research design. We are equally aware of the value and importance of practical application and we explore this more in Chapter 8, which also offers a more general overview of our research.
Chapter 8
Conclusion
O
ur project aimed to draw out the implications of different models and theories of disability for researching the effectiveness of public health interventions. To address this, we undertook a two-part scoping study as well as consultations with public health professionals and socially and politically active disabled people. This provided an overview of current theoretical and empirical debates, including examples of best practice, to help inform a more inclusive evaluative research design in public health research. Chapter 1introduced the project and justified its focus.Chapter 2provided methodological detail by discussing how we conducted the two scoping studies and outlining our approach to analysis andsynthesis.Chapter 3provided an overview of the most common theories and models of disability found in the literature, namely, the medical, rights-based, social and critical disability models. We examined the strengths and weaknesses of each model in terms of their implications for evaluating public health interventions. To help support more inclusive designs,Chapter 4explored conceptual commonalities (and gaps) among public health and disability models. Although a shared commitment to addressing social inequalities was evident in both public health and disability models, we found that the interest in definitions and measurements of disability employed within public health research would be regarded as problematic from the perspective of most disability models. However, the scoping of disability models indicated that the application of a human rights-based model has the potential to provide a link between disability and public health research approaches. This informed the development of our decision aid, which may be used as the basis of (present) critique and (future) capacity building.
We tested this decision aid in the second part of our scoping study (seeChapter 5), which offered a critical evaluation of the public health literature on interventions. This review indicated that disability mainstreaming was not a part of generic evaluations and that many of the specific evaluations focusing on disability were not disability sensitive. We pointed to a range of ethical and empirical gaps within the evaluation of both generic and specific interventions, including what appeared to be an absence of appropriate outcome measures. Our proposed decision aid also illustrated how different models of disability could inform positively the development and evaluation of public health interventions. Furthermore, our decision aid may help to connect evidence-based practice to the diverse needs of those with disabilities, while also being ethically sensitive to broader concerns about social disadvantage, accessibility and inclusion. In doing so, it can connect the need for methodologically robust research with more inclusive social practices.Chapter 6described the deliberative consultation with professionals and politically and socially active disabled people and reaffirmed that human rights approaches are considered helpful but that caveats about how the aid would be used exist.Chapter 7summarised how we met the aims of the research, and the present chapter explores the practical relevance of our work, offers