Implications for public health research of models and theories of disability: a scoping study and evidence synthesis

Article history

The research reported in this issue of the journal was funded by the PHR programme as project number 12/182/14. The contractual start date was in May 2014. The final report began editorial review in November 2015 and was accepted for publication in March 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PHR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Karl Atkin is a member of the National Institute for Health Research Public Health Research Funding Board. Chris Hatton’s salary is part-funded by Public Health England through his role as a codirector of their Learning Disabilities Public Health Observatory.

Copyright statement

© Queen’s Printer and Controller of HMSO 2016. This work was produced by Berghs et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Disability and public health

According to the Family Resources Survey,1 estimates of disability in the UK have remained stable, at 19% of the population. Consequently, 10 million people in England experience significant difficulty with day-to-day activities linked to long-term conditions; this population includes those with lifelong and later-life conditions. 1 As ageing is associated with functional decline, nearly half of those living with impairments are aged 60 years or over. 2 Many disabled people also live with other physical conditions, such as coronary heart disease, diabetes and respiratory conditions, alongside mental health problems. 1

There are marked social gradients in disability across the life-course, with evidence of enduring effects associated with childhood circumstances. 3–10 In addition, and at each stage of the life-course, people with disabilities are disproportionately exposed to the social factors that contribute to health inequalities, including proximal risk factors such as smoking, obesity and lack of physical activity,11,12 alongside broader determinants associated with educational and employment opportunities, poverty and poor housing, and inequitable access to services. 6,13,14 These environmental disadvantages are, in turn, disabling and create further barriers to social inclusion. 12,15,16

There is growing appreciation of the diversity of disabling experiences, with different impairments having their own aetiologies and trajectories, acquired in a wide range of circumstances, and mediated by individual, social and political contexts. The public face of impairment is also challenging previous perceptions by encouraging a more encompassing understanding of ‘being disabled’. 17 Disability, although socially patterned, can affect anyone, including those with pre-existing chronic conditions, mental health problems and intellectual and cognitive impairments. 6,18–20 Furthermore, international understandings have moved away from a strictly medical definition, where ‘disability’ is ‘caused’ by functional deficits (such as physical injury or intellectual disability), to one that is sensitive to environmental determinants and in tune with how people experience disability as they go about their day-to-day lives. 21 This shift is a fundamental aspect of our analysis.

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) reflects these changes, such that disability is understood to result ‘from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’. 22 Human rights and equality frameworks are also increasingly employed to articulate the moral claims and service needs of people with disabilities,12,23,24 in order to reflect impairment complexity. 25,26 The CRPD, for example, sets out an international framework for citizens’ rights and state obligations on health-care provision, rehabilitation, accessibility and research with and for disabled people. 22 The UK is a signatory to this framework, which is further supported at a national level by the Human Rights Act (1998)27 and the Equality Act (2010)28 which make discrimination on the basis of disability illegal, while also requiring an equality duty in health-care provision. 29 The duty to involve and support people in decisions linked to their health and well-being is also defined in the Mental Capacity Act (2005)30 and the Care Act (2014),31 respectively.

Public health research

Public health interventions have a critical part to play in advancing the status and well-being of people with disabilities. Interventions to tackle underlying causes of ill-health and reduce health inequalities have the potential to transform lives. 6 These interventions also support wider policy objectives to promote independent living and care at or close to home. 32 However, there are significant challenges to developing an evidence base,33 and four broad inter-related concerns can be identified: a lack of engagement with more theoretical conceptualisations of disability; a lack of methodological sophistication in including and capturing the experiences of disability; limited public engagement; and failing to ensure that research findings produce evidence that reflects the diverse experiences associated with disabling conditions. These challenges explain why public health research has been criticised for largely overlooking the experiences of disabled people and has been slow to accommodate shifts in understandings of – and the politics around – disability,34–39 despite equity being an increasingly salient feature of public health interventions. 40 Perspectives and assumptions can, for example, be outmoded and inappropriate, with disability represented as a ‘burden’ and a ‘cost’ to society. 41–43

Consequently, there is limited evidence on the types of public health interventions that are likely to be effective and on the kinds of measures that should be used when evaluating effectiveness. 44 There remains a dearth of public health material discussing intervention design, methods, including economic evaluation, and strategies to actively make mainstream disability-sensitive research by adapting universal and inclusive designs. 45–48 There is also little debate about how best to actively engage disabled adults, young people and children, particularly when trying to identify interventions consistent with disabled people’s preferences. 49–54 Further difficulties are associated with accommodating the differences generated by lifelong, acquired or fluctuating conditions, where experience is further mediated by sociodemographic factors such as gender, social class, ethnicity, sexuality and age. 10,55–57 Few studies, for example, assess the impact of public health interventions aimed at specific groups of disabled people, with diverse circumstances across the life-course. 58,59

This report seeks to fill these gaps by facilitating a discussion on the most appropriate ways in which to generate research evidence that is sensitive to a broad range of disabling experiences. 21,60 This is challenging. Nonetheless, disability studies and allied perspectives offer alternative ways of defining and engaging with disability, which can improve future intervention research. 61–66 However, these perspectives typically derive from a different epistemological and ontological starting point to that informing mainstream public health research and policy. 67–70 They might, for example, encourage a suspicion of any public health interventions that seek to ‘rehabilitate’ or ‘normalise’ behaviour, believing them to be a form of oppression and to deny the rights of disabled people. 23,71

Such perspectives – aligned to social and political movements – conceptualise disability as generated by the wider structures of social inequality and as a human rights issue. 72 Research perspectives and methods that have been built from these perspectives are grounded in an appreciation that disability is – and is experienced as – a dynamic interplay between impairment, attitudes and the environment. 73 Consequently, disability seen to be generated by normative values and assumptions, embedded in discursive practices, where failure to accommodate diversity and difference denies the experiences of people with disabilities, generates oppression and produces inequalities.

These approaches have generated a rich literature on disability – including that developed by the World Health Organization (WHO) – which accommodates social, relational, ecological, economic and medical models. 12 Recent international reviews, for example, have examined the application of different theories to public health interventions in terms of measurement, applicability and standardisation. 62,63,74 These reviews challenge mainstream practices and generate alternative ways of doing research. Some reviews, for example, have examined how public health theories could connect to specific disability measurements. 75 There are also studies assessing the relevance of public health outcome measurements to the experiences of people with disabilities. 43,61,76–79 Other work, although oriented to specific forms of impairments or groups, such as intellectual disabilities, mental health or younger populations, explores how disability impacts on and is affected by public health interventions,55,58,80–82 including health information;83 health-promotion interventions;57,84,85 health checks;86 self-management;87 personalisation;88 self-advocacy;89,90 and access to health care. 82,91 Despite providing valuable insights into more inclusive research strategies,36,51,65 this disparate literature has yet to be synthesised in a way that makes it accessible to those commissioning and undertaking public health research. 92 Connecting this more critical literature on the experiences of disability to the models and theories associated with public health is an important starting point, from which more inclusive research may emerge.

Why do the research?

Public health interventions aim to improve population health and reduce inequalities. As we have seen, people with disabilities are at particular risk of poor health and are disproportionately disadvantaged vis-à-vis the social factors that contribute to health inequalities. Although people with disabilities constitute a major recipient group for public health interventions, research has not engaged in any systematic way with the experiences of people with disabilities. 93 This undermines the ability of public health research to promote equity and social inclusion. 40

An appreciation of how different models of disability can inform the development and evaluation of public health interventions, together with the provision of guidelines on the most appropriate ways in which to incorporate the perspectives and experiences of those with disabilities, could be especially beneficial to research and policy. 94,95 It can help connect evidence-based practice to the diverse needs of those with disabilities, while also being sensitive to broader concerns about social disadvantage, accessibility and inclusion.

It is against this background that the NIHR PHR programme commissioned research on the public health implications of models and theories of disability. Public health interventions have been a key feature of successive governments’ policies, with a focus on developing interventions that both improve overall population health and reduce health inequalities. This drive has occurred against the backdrop of an ageing and increasingly diverse disabled population, and a cost-saving agenda that places a premium on people with impairments remaining in the community and accessing – and remaining in – the labour market, supported by effective health- and social-care interventions.

Increasing attention is being given to understanding how public health can deliver appropriate models of support and ensure better outcomes for disabled people, in which their rights are respected. 96 The Department of Health, for example, began a partnership with the Disability Rights Commission (now part of the Equality and Human Rights Commission) to ‘improve information and services, communications and levels of awareness of disability issues’. 97,98 Such strategies promote the inclusion of disabled people, their rights and needs in all public services,99 including public health. 100–102

There are particular advantages of integrating current public health research to emerging ideas that see those with disabilities as active citizens, part of wider social networks (such as partners and parents) and as stakeholders in the services that they use. 56,103 Incorporating such perspectives, while maintaining a commitment to understanding what – and how – interventions work, can lead to a range of public health benefits. 104 These include the promotion of health, social inclusion and equality. For example, the life expectancy of those with mental health problems is 20 years lower than the population norm. 105 One of the reasons for this includes the difficulty of maintaining a healthy lifestyle. 106,107 Smoking cessation raises particular challenges, particularly given that evidence suggests that current interventions are not sensitive to the experiences of those with mental health problems or the ways in which people have to negotiate social disadvantages associated with their disability. 108 A more inclusive approach, committed to ensuring that differences do not become the basis of inequalities, not only would empower people but would also have the potential to achieve significant public health gains. 109

Aims of the study

As we have argued, the complex and nuanced nature of disability is rarely considered in public health debates, especially when evaluating interventions. With a large and growing population of disabled people, the UK needs a strong evidence base on which to build future intervention research, and one that specifically offers advice on how to reconcile established research designs with those informed by more inclusive models. Without this, we shall continue to know little about what will work, for whom and under what circumstances. In line with the commissioning brief, our research questions are:

1. How can different models and theories of disability appropriately inform research into the effectiveness of public health interventions? To what extent can intervention research be sensitised to accommodate different configurations of diversity within and among general and disabled populations?

2. How do different models of disability map on to current research on public health interventions? What are the implications of commissioning research into public health interventions that are inclusive of, or for, disabled people in a way that accommodates appropriate terminology and measurement and takes account of different causes and types of impairment, while being sensitive to the experience and needs of different demographic groups associated with gender, socioeconomic position, ethnicity, sexuality and age?

3. How should participants, the public and stakeholders be involved in research and what does inclusive research practice look like?

4. What study designs and relevant outcomes best capture the experiences of impairment and disability in a way that maximises health benefits and that ensures that mainstream research reflects the experiences of people with disabilities?

To answer these questions, the project was organised in two parts (see Appendix 1). First, we scoped models and theories of disability and explored their relevance for public health paradigms; and, second, we assessed their implications for public health by reviewing a sample of systematic reviews of public health interventions, explored how far current intervention designs incorporated approaches consistent with disability models and theories. Our analysis, along with discussions with politically active disabled people and professionals working in public health, informed the iterative development of a decision aid. The decision aid aimed to critically evaluate current research practices and evidence bases, while looking to the future by enabling commissioners to assess the likelihood that commissioned public health research will produce more inclusive evidence relevant to the experiences of those with disabilities.

Conclusion

This opening chapter established the context for the research and the reasons why it is necessary. To be relevant, public health research needs to reflect a diverse range of disabling experiences. Otherwise, current evidence will struggle to engage with social disadvantage, accessibility and inclusion and thereby will risk generating inappropriate responses and wasting valuable resources. Our research explores how mainstream public health research can be more sensitive and inclusive of disability, in terms of how research is commissioned and how interventions are developed and researched. This includes connecting theoretical debates about how disability is conceptualised with current research practice to assess how current research design captures, engages and explains the experiences of disability. Our final conclusions will enable commissioners to judge the likelihood that research on a particular intervention will apply to a range of different disabilities, as experienced in different social contexts. It will also encourage researchers to adapt more inclusive approaches, including examples of best practice, from which successful public health interventions can be developed. Chapter 2 outlines how we operationalised our research questions by discussing the methodological basis of our work.

Stage 1: scoping different models of disability

We sought to identify, appraise and summarise relevant works on disability according to an explicit and reproducible methodology. Typically, scoping reviews are inclusive, and encompass relevant literature, concept or policy mapping, in addition to stakeholder consultations. 110–112 This can be a strength when assessing the depth and breadth of a research field and particularly one characterised by diverse approaches. 113–115 However, it can also be a potential weakness, which underplays specificity and encourages imprecision,112 while the perceived lack of defined quality assessment can affect empirical robustness and, in turn, policy uptake. 114,116

Aware that we had to provide a broad (theoretical) overview of a research field, while mindful of potential weaknesses in our approach, we relied on Arksey and O’Malley’s110 widely used framework to establish transparency, which helpfully parallels those used for more conventional systematic reviews. This framework informs a structured approach to reviewing, while incorporating an iterative searching process, with search terms subject to refinement in the light of the studies identified. The framework also enables us to contextualise our discussion in broader debates. We further supplemented our approach with reference to Levac et al. ’s115 and Daudt et al. ’s117 recommendations of enhancement, which include (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarising and reporting the results; and (6) a consultation exercise.

To this extent, our approach is more akin to a knowledge review. Such reviews, developed by the Social Care Institute for Excellence (see www.scie.org.uk/), provide a thematic, explanatory exploration of the relevant literature. Knowledge reviews are especially useful in informing more reflexive commissioning, policy and practice112,114 and more broadly in assessing theory and models. 118 They also allow an appraisal through ‘mapping’ the literature rather than giving an ‘assessment’ of the ‘quality of the individual studies’, while highlighting gaps in current available reviews. 112 Moreover, knowledge reviews do not take the available evidence at face value but generate important questions about, for example, what research is commissioned and whose priorities it reflects. 112

Refinement of inclusion criteria

In charting each article, we further refined the explicit discussion of theoretical models by offering an analysis of a particular model, paradigm or perspective; a comparative analysis or comparison between models, paradigms or perspectives; and a meta-analysis of models, paradigms or perspectives. We included grey literature if relevant, for instance, an extensive book review presenting a critique of a particular model and any subsequent rebuttals. We excluded applications of a model to a specific impairment or group of impairments, research-based papers or testing of a model or paradigm. We also excluded sociocultural understandings of disability, statistical approaches and in-depth theoretical or philosophical analyses unless specific to a model, paradigm or perspective. Although some commentaries and editorials were interesting, we excluded them if they referred to a study that was already included or critiques made more extensively elsewhere.

The refinement of the inclusion criteria through the mapping exercise meant that we were left with 121 articles. After scoping by the primary reviewer (MB), a second reviewer (KA) examined the validity of the findings of the primary reviewer. The second reviewer also checked and charted the 27 articles about which the first reviewer was unsure. As most of these articles were concerned with explicit discussions about disability and were not research-based, the first and second reviewer did not have to engage in an analysis of the methods and methodology or robustness of the research undertaken.

The results of our initial search strategy finally identified 104 articles explicitly about disability models, paradigms and theories (Figure 1). We used these articles to identify relevant secondary sources and grey literature such as major books and theories on disability theory and sociological theory linked to disability (such as that on chronic and long-term illness) as well as public health policy documents from national and global institutions such as the Human Rights Commission, the WHO, the UN, the UN Children’s Emergency Fund, the International Monetary Fund and the World Bank. An initial list was drawn up largely based on the volume of citations. We also discussed and agreed with our project steering committee what the more influential and most important texts (books and chapters) on disability theory, models and definitions were. This literature provided important and nuanced theoretical context to our analysis, while reflecting current debates about disability and how these have changed over time. To this extent, our account is a broad and extensive map of current theories and models of disability.

FIGURE 1.

Scoping flow chart.

Stage 2: reviewing public health interventions

We now turn to the second stage of the scoping review and explore its relationship with stage 1. Our second stage explored three components, namely:

1. broader public health interventions potentially relevant to the lives of disabled people, in order to gain insights into the ability of mainstream research to capture the experiences of disability (n = 30 reviews)

2. public health interventions targeted at people with disabilities, which enabled us to explore the potential of more inclusive designs (n = 30 reviews)

3. an analysis of the applicability and feasibility of a decision aid applied to the two reviews of interventions, to assess the potential for a more inclusive approach, reflecting the diverse experiences of disability.

Key analytical questions, applied to both reviews, included:

• Was an inclusive approach considered and used to inform the design and conduct of studies?

• Did the study design privilege the inclusion of some impairment types and disability groups over others and, if so, what types of disabilities are more likely to be accommodated?

• What possible accommodations could be identified to make for a more inclusive research design?

• Were accommodations – potential or otherwise – identified by authors as having the potential to jeopardise the scientific integrity of the research evidence?

• Were communication difficulties used to justify the exclusion of certain people and to what extent could these be regarded as legitimate?

• How were those with disabilities treated when recruiting to the study?

• How was disability discussed in the findings?

• Did the authors consider the extent to which their findings could be generalised to include the experiences of those with disabilities?

• To what extent could the findings produce relevant and universal evidence?

• To what extent could study designs be perceived to be disablist (excluding disabled people) or ableist (premised on able bodied norms).

Similarly to in stage 1, we followed Arksey and O’Malley’s110 framework. This provided a structured and iterative searching process, with search terms subject to refinement in light of the studies identified. We did an initial pilot search using The Cochrane Library before beginning our formal full searches. The combined MeSH terms of ‘disability’ and ‘interventions’ generated > 5000 hits. However, the joining of the MeSH term of ‘disability’ AND ‘intervention’ generated a more manageable 643 results. We used this to generate a sample of 30 reviews; each, on average, included 16 studies (with a range of 3 to 51 studies). This potentially gave us material on 480 studies. However, when we reviewed these studies in more detail, we found that many of these interventions were not reviews of randomised controlled trials (RCTs) that were sufficiently specific to the public health policy context or inclusive of ‘disability’. We checked to see how many studies were specifically about ‘public health’ AND ‘disability’ and found only 13 results out of a possible 8664 records. The pilot search, therefore, demonstrated the feasibility of our approach but also the importance of assuming a more iterative approach to the literature, particularly given the broad and flexible use of terms such as ‘public health’, ‘intervention’ and ‘disability’. To further facilitate this approach, we compared an expansive search with a theoretically specific search to assess how best to proceed.

The expansive search was extensive to the extent that it identified how many interventions were linked to public health and how many interventions were linked to disability in The Cochrane Library. The theoretically specific approach was informed by an analysis of disability theory and models linked to both ecological public health and disability rights models, in addition to reflecting differing impairments, intersectionality and life-course (see Chapter 3). This approach also had the advantage of focusing on individual, social–relational, social and macrostructural levels, linked to differing public health issues as well as to disabilities. Contrasting an expansive with a theoretically informed searching process also allowed a check of The Cochrane Library in terms of what would be identified by the Library as relevant.

Our focus on public health interventions and their evaluation using RCTs offered a good reflection of current policy, research and funding priorities in the UK. Furthermore, policymakers, researchers and professionals frequently used The Cochrane Library to inform decision-making. The Cochrane Library, although not covering a broad range of evaluative methodologies, does provides a good account of mainstream public health research and this is what we wanted to capture.

The results of our expansive approach allowed us to gain an overview of and to identify relevant systematic review studies for our topic of interest (see Appendix 3). We found 181 results from 8660 records from a search on ‘public health’ in the title, abstract or keywords, and we found 541 results from 8660 records from a search on ‘disability’ in title, abstract or keywords in The Cochrane Library. We printed out a list of the first 40 studies for public health interventions to check mainstreaming and the first 40 most relevant disability interventions to check inclusion. We had a list of studies for public health and a list for disability, and two reviewers (MB and KA) checked each study for relevance.

Having undertaken the expansive scope, we cross-checked the findings by means of a theoretically specific scope to find out how that would compare. When scoping the disability literature, we found that disability concepts such as ‘theory’ and ‘model’ were rarely linked to evaluation of reviews. 118,120 Bonner123 argues that theory-based evaluations can be of great use in identifying why interventions do or do not work in specific contexts and can be linked to realist pragmatic outcomes. Moore et al. 124 note the greater importance of theory and its contribution to how the Medical Research Council (MRC) guidance of complex interventions was framed. This is why we decided that it was important to understand the role of theory in public health interventions. We used the theoretical paradigms of the different but interconnected levels on which public health and disability interventions should ideally be working.

We combined our search on interventions with insights generated from our theoretical search to guide the scoping and to ensure that it covered issues across individual, social, institutional and policy perspective, both in terms of a ‘public health’ and a ‘disability’ focus. Furthermore, and to ensure consistency with the NIHR PHR brief, we decided that our scoping should be guided by individual public health policy priority issues (such as obesity) as well as by areas in which we thought that future individual public health issues would probably lie (such as gambling, new forms of infectious diseases and disaster preparedness) or more social public health issues (such as the use of green and public spaces, urban renewal and impact of environmental change). We cross-referenced for possible variations on terminology and to ensure consistency with the brief, and included current public health themes as reflected in recently funded interventions by the NIHR PHR, such as health literacy, binge drinking, physical activity and smoking cessation (Table 3).

We printed out the first three hits for each of the headings. The first (MB) and second (KA) reviewer went through the results to assess relevance for public health. Although there was a plethora of material on public health priorities such as obesity and smoking cessation, there was, perhaps not surprisingly, not much evidence on effectiveness of interventions on possible future public health policy issues such as gambling, the environment or recreation. This is an important consideration when interpreting our findings.

Our review of public health and disability followed the same approach (Table 4), although we additionally conducted a mapping exercise identifying common forms of impairment by noting the number of hits when we cross-checked with public health (i.e. ‘public health’ AND ‘intellectual disab*’).

To ensure consistency with the brief, we checked our findings against common forms of ‘disability’ in Britain,1 alongside what we thought would be future public health priorities in terms of improving health, well-being and quality of life (QoL) (e.g. dementia, depression and mental health). Terminology often had to be clinical to access the interventions we were looking for. We tried to be exhaustive by cross-checking interventions on disability issues (i.e. work disability and behavioural interventions), while also including terms such as ‘sustainable’, ‘investment’ and ‘social protection’. We had, however, few public health and disability hits, despite disability models and theories indicating that public health research was moving in this direction. This explained our use of supplementary databases.

Many of theories and models of disability identified disability as an affirmative identity and examined disabling barriers that impede independence and health. The idea of ‘independence’ was foundational to the creation of many disability theories and models. To ensure that such paradigms were not excluded, we further verified our approach against the Derbyshire Coalition for Inclusive Living’s ‘seven needs for independent living’. 125 This approach consists of information, peer-support, housing, technical aids, personal assistance, transport and access. 125 Unfortunately, we could not find sufficient public health evidence linked to peer-support, technical aids, communication and personal assistance.

To conclude, neither an expansive nor a theoretical scoping on disability was as relevant as the combined, more focused, results that we gained from MeSH terms such as ‘public health’ AND ‘disability’. We increased hits a little by adding variations of (disab*). Additional piloting indicated that the Campbell Collaboration Library of Systematic Reviews and Joanna Briggs Institute Database of Systematic Reviews and Implementation Studies were important in accessing more specific information on public health and disability, particularly with regard to future priorities. We decided to use these three databases (the Cochrane Library, the Campbell Collaboration Library of Systematic Reviews and the Joanna Briggs Institute Database of Systematic Reviews and Implementation Studies) together to build our review of specific interventions about disability and public health. The results of the theoretical scoping were slightly better for public health, in that this ensured a more general overview in terms of accessing public health issues in accordance with an ecological model on several levels from policy implementation to individual physical interventions. 126 However, the two reviewers found that the same results were obtained within an expansive scoping by rejecting doubles, or reviews of interventions that were on the same theme. To guide the scoping, the two reviewers decided to keep the idea of multilayered framework – combining expansive and theoretical scoping – and use it as an implicit guide (Figure 2). We also note the importance of rejecting interventions on the same theme to ensure an overview of policy issues, while reflecting areas in which research was lacking.

FIGURE 2.

Mapping theoretical approaches on to reviews of interventions.

Developing a decision aid and checklist

Our initial analysis suggested the importance of developing a decision aid which could:

• provide a framework by which to offer a critique of current research practices

• build capacity and support a more inclusive public health research agenda.

In analytical terms, the decision aid can be seen as an outcome of the first scoping review, which was further developed when evaluating material generated during the second stage of the scoping review and in consultation with our deliberation panels. Our scoping review indicated a need for a greater connection between the disability literature and public health interventions. The lack of explicit engagement with disability that we identified in the public health reviews made this challenging. Nonetheless, we were able to use the material to generate an informed and critical discussion, which connected more theoretical approaches to the more practical, methodological questions raised by the commissioning brief. Chapter 5 provides a more detailed account of our findings, but, as some important themes informed our analysis, we briefly discuss them here.

A study may have been inclusive of ‘disabled people’ but may not have thought about offering a meaningful analysis of disabling experiences by mainstreaming ‘disability’; engaging with disability culture; or considering (dis)ableism in research design. Similarly, most studies had a rudimentary discussion of ethical issues, often confining discussions to confirmation of gaining ethical consent and formal approval. Few, if any, studies engaged with broader ethical issues associated with ensuring ‘inherent dignity’. Only one study, for example, discussed how disability had been ‘dignified’ in terms of inclusive practices. 135 As anticipated, the participation of disabled people in a study’s development and inclusion in samples was rare. Nonetheless, understanding the reasons for inclusions or exclusions was valuable in developing the decision aid. Intersectionality, accessibility and equity assumed similar analytical importance.

Intersectionality was often defined in terms of descriptive categories and reported as such, with little attempt to offer explanatory accounts. It was rare, for example, for sociodemographic categories to be theoretically linked to specific paradigms. Offering an explanation of inequalities was, therefore, the exception rather than the rule. Overall, most studies had examined certain issues of intersectionality but very few put them all into practice, especially comorbidities. For example, papers would note that disability was linked to diabetes and chronic conditions but did not explore this during analysis. More often than not, comorbidities were used as a reasons for exclusion. 136 Accessibility and the broader accommodation of study participants with disabilities were poorly articulated too, with few attempts made to offer a theoretical engagement or to connect to study design. 137,138 Most authors noted that accommodations could have been possible but were not applicable to the study, that study settings, such as schools, would have mainstreamed participants with disabilities and, therefore, did not have to consider it, or ignored the question. Equity was a particularly difficult issue to define. Many of the problems were linked to the empirical design of interventions and, although most studies had theoretically considered equity, they could not provide evidence of long-term sustainability, sensitive to the needs of disabled people or how their intervention could be maintained in the long term. We thus had to focus on methodological design in terms of equity, particularly given that inclusion could occur within an ethical and empirical environment not conducive to equity. 136

Deliberation panels

Consultation with stakeholders is an essential but often neglected part of scoping methodologies. 115,117 We were committed to debating our findings with key stakeholders, particularly given that we believed it would prove useful in identifying gaps in the accommodation of disability in public health. Such consultation would also enable our research (and public health) to reflect the social and political context of disability. 139–141 We first deliberated our findings with politically and socially active disabled people. This ensured that our findings had some grounding in the expectations and experiences of different stakeholders, including those likely to be critical of our approach. We felt this to be especially important, as we wanted our account to reflect the challenges facing public health research when engaging with people with disabilities. We also recruited participants from different regions, to reflect the local dynamics of disability politics. Our agenda was deliberately broad, and the deliberation panels offered expertise, criticisms and advice on the relevance of our work. 142 A fifth deliberation panel comprised researchers, public health professionals and commissioners. The purpose of these deliberation panels was to ensure that our discussion was located in the practicalities and challenges of undertaking public health research. We could also contrast the priorities of professional stakeholders with those of politically active disabled people.

We engaged four partner organisations to help us organise and recruit people to these panels. These voluntary organisations were geographically spread across the country in London (Inclusion London), Manchester (Greater Manchester Coalition of Disabled People), Sheffield (BME Network) and Leeds (Sisters of Frida). The organisations were very small, locally run and located in areas linked to social disadvantage and deprivation, such as Brixton (London) and Moss Side (Manchester). Potential participants were all given information sheets explaining the study and a copy of the ethical decision-aid to discuss before the panel happened (see Appendix 8). The voluntary organisations were given recruitment fees and the participants were paid a fee plus travel expenses for participation.

Although we wanted the deliberation panels to reflect diversity, we did have issues in terms of how inclusive we were of various impairments and identities. Initially, we contacted the Mental Health Foundation/Joseph Rowntree Foundation (Dementia Engagement and Empowerment Project)143 with regard to organising a group with people in the early stages of dementia. We wanted to capture the experiences of people not yet politically organised as ‘disabled’. 96,144 Owing to time constraints, this was not possible. We also wanted to capture the recommendations of people with various types of impairment who may not ascribe to an identity of ‘disabled’ or ‘disability’ but who may be socially and politically organised. We had more success in achieving this.

Five deliberation panels took place during late July and early August of 2015. A total of 34 participants were involved. Formal ethical approval (see Appendix 9) was granted by the Department of Health Sciences’ Governance Committee (University of York). In gaining approval, we were aware that our work occupied a grey area between consultation and research. We decided to gain ethical approval, however, as it would enable us to publish our findings.

Before each deliberation panel began, participants were asked if they had any questions about the information sheet or study. Participants were assured of anonymity and confidentiality. The consent process and form was also explained to participants. A moderator from the partner organisation was always present and ensured oversight of the deliberation process. The deliberation panels were recorded and lasted between 60 and 100 minutes. The deliberation was structured into three parts: the meaning of public health; how to conduct public health research; and the relevance of our decision aid. Our sampling strategy attempted to be as inclusive and diverse as possible. In total, 30 disabled people participated in four panels. They had a wide range of backgrounds and impairments (Table 5). These included social activism within an organisation or community work, in addition to political activism, lobbying and representation. Parents of disabled children were involved, alongside young people with disabilities. Adults participating included those with hidden disabilities, undiagnosed conditions, fluctuating conditions, multiple impairments and mental health issues. We did note a slight predominance of people with visual impairments and wheelchair users. People with hearing impairments were under-represented, whereas people with learning disabilities were not represented. We also noted a slight gender bias, with more women than men in all but one of the panels. The panel with health-care professionals recruited four people. When we explored this low uptake further, we found that many public health professionals thought that disability was a specialised issue or not directly linked to public health. Many, therefore, declined because they thought that they would have nothing to say.

Deliberation panels were digitally recorded, transcribed, anonymised and analysed using NVivo (version 10, QSR International, Doncaster, VIC, Australia). Analyses were conducted using a constructionist grounded theory. We started data analysis using line-by-line coding, then developing categories, which we coded thematically. The object of the thematic stage of coding was not to develop a theory per se, but to assemble the insights of our participants to refine the decision aid. 145

Role of the project steering committee

To ensure the relevance and quality of our scoping review, we established a project steering committee. This met three times during the project. The committee include research commissioners, policymakers, researchers and representatives of disabled people’s organisations. They offered advice on the conduct of research in relation to key milestones, helped the research team to interpret findings, provided critical feedback on project outcomes and advised and supported dissemination activities.

Some of the more politically active disabled people who we approached declined to take part. This was attributable to a perceived emphasis on public health at the expense of disability. Those involved in public health regarded disability as a specialist issue, outside the scope of their expertise. It was also not a particular priority for them.

The first meeting of the steering committee discussed the research project, protocol and the research team’s proposed approach to scoping models and theories of disability. Although supportive of the project, members expressed concern that disabled stakeholders had not been involved in drafting the initial commissioning brief. They also made various methodological comments, which were incorporated into the study design (see Initial inclusion criteria), and emphasised the importance of finding a common ground on which those working in disability-related fields could engage with those doing public health research. The second meeting discussed the scoping of public health interventions and the development of the decision aid. The committee agreed with the emphasis on human rights. The final meeting discussed the findings from the deliberation panels and how best to disseminate the findings of the project.

The committee found this a difficult and challenging project. This made for interesting debate, which demonstrated the difficulties of establishing a more inclusive public health research agenda. Those with a background in disability studies, for example, sometimes felt ill at ease engaging with public health paradigms, particularly if there was a perceived association with rehabilitation. Some also expressed concern that people with disabilities faced more fundamental problems associated with access to basic care and what was seen as a more general assault on their rights resulting from the current reorganisation of welfare provision. (As we shall see, members of our deliberation panels made similar observations; see Chapter 6.) Those working in public health sometimes struggled to reconcile more inclusive approaches with the need to maintain the ‘scientific’ integrity of research.

Conclusion

This chapter presented our methodological approach, although, as we have noted, we used an iterative approach, meaning that this is not a conventional methodological chapter per se. Nonetheless, it provides a transparent account, outlining in some detail what we did and how our methods informed our findings. Our account, which synthesises information from a variety of sources, employed a narrative, thematic and interpretative approach. This synthesis linked different models and theories of disability to an understanding of public health research. The synthesis demonstrated the breadth and depth of the literature on disability, including possible (theoretical) tensions when applied to public health research. This was connected to an assessment of the more practical aspects of research design and inclusive research strategies.

In the chapters that follow, we begin by outlining four inter-related models explaining disabling experiences and then assess potential strategies for connecting these models to public health research, by exploring the value of a ‘decision aid’. This decision aid offers various options for both a critical appraisal of current research practices and a strategy for developing a more inclusive public health. It provides a bridge between the different models of disability and the concerns of public health by outlining a range of options with which commissioners, practitioners and research could engage.

By integrating the findings from the different reviews, we are in a position to provide best practice guidelines on terminology and categorisation; deployment of life-course perspectives; participant, public and stakeholder involvement; and the appropriateness of study designs and outcome measures to explore the diverse range of experiences associated with different disabilities. By evaluating a range of strategies, our findings seek to inform the commissioning of both future research on targeted public health interventions and generic interventions designed to mainstream disabled people/groups. However, it is important not to give definite guidance in what is a rapidly changing field. There is also a limited evidence base on which to inform decision-making. This is why we discuss possible choices and their consequences. We are especially sensitive to the needs of more social and emancipatory models of doing research, while recognising the practical demands of producing evidence-based public health research.

Mapping a shifting debate

We found a wide variety of models (statistical, professional, psychological, rehabilitative, policy, ecological), including models that focused on specific impairments (i.e. autism, arthritis, depression). Most of these models were located in the Global North, although a number of large quantitative studies were based, for example, in China. There was much less meta-analysis of models or in-depth (theoretical) exploration of strengths and weaknesses of a particular model. The earliest models that we found were linked to rehabilitative public health146 and were located mainly in the USA. 21 Many of the models also had an economic basis or were concerned with quantifying disability, especially from the early 1990s onwards (see the activities of the World Bank and the WHO). 12,59 The need for international standards of measures was strongly correlated to global development discourses as well as to debates about the definition of health and the meaning of QoL. One of the most influential QoL measures was Amartya Sen’s147 capabilities or capability approach. The capabilities approach has transcended its original economic origins to become a normative framework associated more with human rights approaches. 148–150 Such an approach argues that, when promoting human development, the focus should be on ‘functioning’ in terms of ‘being and doing’, consistent with what people are able to achieve. 151 This has been hugely influential in social justice152 and human rights151 and has been applied to understanding thresholds of deprivation in economic development (the UN’s Human Development Index). Nussbaum and Sen152 argue that human development should be related to an understanding of QoL in terms of people’s capabilities. The capabilities approach was foundational for feminist approaches to, and in indices measuring, gender development. 153 The capabilities approach has also been influential in public health, in particular in linking financial capability, health and disability. 154 These factors tie in with larger international public health programmes and interventions linked to welfare or social security, which, for example, examine the impact of conditional and unconditional cash transfers on health to increase capacity and capabilities. Nevertheless, the capabilities approach, although seemingly positive, is still largely related to the measurement of the economic impact of ill-health and disability,155 although there are signs that this might change, as the capabilities approach has the potential to develop into a paradigm more accessible to empirical researchers. 148,156 Furthermore, and perhaps reflecting its original association with socioeconomic policies, there remains a tendency for capability debates to conceptualise social justice in relation to the distribution of welfare ‘goods’, rather than as a broader connection to social equality and discrimination. Resolving these tensions is likely to be an important consideration when assessing the usefulness or otherwise of capability approaches in engaging with more critical rethinking of disabling experiences.

The most influential approaches to measurement are found in the International Classification of Diseases157 (ICD) and the Global Burden of Disease (GBD). 158 The GBD uses metrics based on ‘disability’ gaps such as disability-adjusted life-years (DALYs). 41,159 DALYs similarly appear in the literature from the 1990s onwards and are used in the World Bank’s World Development Reports160 and Disease Control Priorities Review. 161 DALYs measure health lost as a result of mortality or non-fatal injuries or disease and are calculated by adding years of life lost and years lived with disability. 162 The GBD study is updated each year and calculates the prevalence of disability using a number of measures such as DALYs;44,163 it also increasingly involves the measurement of acute and chronic diseases and injuries. 122,158

In terms of metrics such as health-adjusted life-years, quality-adjusted life-years (QALYs) or DALYs, there has been little discussion about how and why these measures were developed or the ways in which they could be seen to imply that disability or ill-health are ‘costs’. 160 This is a problem to which we shall return. Methodological issues were discussed in the associated literature but this tended to focus on issues relating to weighting of variables and the definition of life expectancy to calculate cost-effectiveness164 rather than to offer a critique of the concept of disability underpinning the quality-adjustment of people’s health.

By the late 1990s, criticisms of the use of DALYs had emerged. These criticisms questioned the norms and values underpinning such a measure, highlighted the dangers of viewing health in a silo without connection to the broader social environment, and asked whether or not such metrics adequately captured disabling experiences. 164–166 Later criticisms of DALYs focused on attempts to understand the influence of self-report, cost-effectiveness and culture on understanding disability. 167–171 For example, a person with a visual impairment may not be in poor health, and being ‘blind’ might be an issue linked to welfare rather than to health. 167 Several critiques note the insufficiency of current measures to capture both the increasing complexity of impairments and political understandings of disability. 63,172 Measurement tools linked to measuring health expectancies in longitudinal data also came to the fore, particularly in the 2000s, as demonstrated by disability-free life expectancy, disability-adjusted life expectancy or healthy life expectancy. 166,173 Similar criticisms about the ability of such tools to capture complexity have emerged. We return to this in Chapter 4.

The tendency to view disability in terms of health measures has sometimes resulted in the neglect of other relevant health policy priorities directly linked to disabled people’s daily lives in the UK, such as independent living, direct payments or the personalisation agenda. 39 Debates about measurement have also struggled to reflect the conceptual debates over how disability is understood. 122,174

From the 1990s onwards, research on development and poverty began to include disability, but epidemiological research on how inequality links to disability did not come to the fore until the 2000s. Even then, most studies were quantitatively driven and rarely reflected more qualitative experiences of disability. 175 However, critical voices, often aligned with the social model of disability, began to have an influence (see A more social model approach below). Mike Oliver’s reworking of the Office of Population Census and Surveys (OPCS) (now the Office for National Statistics survey) demonstrates some of these tensions (Box 2).

Other problems included difficulties over how measurements captured changing debates about health and social care and in particular incorporated ideas about ‘self’ care, management and advocacy. 88 Measurements informed by the political movements of disabled people or advocacy were equally rare. Nonetheless, over the past 5 years, we note an international and national move towards viewing disability as an essential feature of all future public health initiatives, which in turn are strongly influenced by rights-based models. The influence on public health practice, however, appears to have been slow. Most developments continue to focus on screening for disability or its measurement within population groups.

Definitions of ‘impairment, ‘disability’, ‘illness’, ‘disease’, ‘disorder’ and ‘chronic illness’ are constantly shifting, especially in terms of how they are linked to what is understood as ‘disabling’. Armstrong,176 maintaining a critical stance, saw the emergence of concepts such as ‘chronic illness’ as linked to the medical pathologisation of ageing. During the scoping review, we also noticed a further inconsistency in how ‘disabling’ is defined, with terminology more consistent with ‘disease’ or ‘disorder’ noted when discussing addiction and obesity. This may point to a growing emphasis on biomedical understandings171 rather than on more collective experiences of disability and disablement, linked, for example, to austerity. 177,178

Medical definitions and classifications have also been influenced by the WHO’s international global policy priorities and classifications in terms of their differing models, classifications (i.e. ICD) and/or diagnostic manuals [i.e. Diagnostic and Statistical Manual of Mental Disorders179 (DSM)]. However, the language linked to impairment could still be regarded as paternalistic, by, for example, focusing on ‘vulnerability’, or as patronising, by prioritising models for professionals working with disabled people rather than the perspectives of disabled people themselves. 180,181 This is also evident in public health policies linked to disabled people and their emphasis on dependency. 182 The emphasis on the measurement of impairment could also be regarded as particularly unhelpful, as could the discriminatory language (‘retarded’, ‘retardation’, ‘deficiency model’, ‘subaverage’, ‘slow’ or ‘slow-functioning’)183,184 and implicit concern with ableism (‘failure to adapt’ and ‘challenging behaviours’). 185

Despite critical challenges to such views, which have been influential in public health, there remains a tension between viewing impairment as an ‘outcome of disease or impairment’ or as a disability, informed by social limitations connected to discrimination. 21 It is unclear, for example, if mental health, pain or substance abuse issues were viewed as ‘impairments’ or as ‘disability’ when quantified as such in bureaucratic, administrative or professional models.

Current debates about obesity are likely to generate similar confusion. Administrative, legal and medical understandings exist side by side, with each influencing the other but in ways that are not always recognised, questioned or acknowledged.

The growing influence of more holistic measures, however, has been welcome, particularly as more ecological paradigms have become influential. From the early 2000s onwards, for example, we see more analysis in terms of the intersectionality of disability (such as gender, age, ethnicity and socioeconomic class). There has also been a greater willingness to explore how the biosocial, institutional and cultural processes influence understandings of disability. An issue such as ‘addiction’, for instance, has shifted from being understood in terms of a disabling ‘brain disease model’ to ‘ecologies of addiction’,186 ‘neurosocial’187 or even ‘neuroplastic’188 understandings. These models are correspondingly linked to recent (bio)social science challenges and innovations,189 for instance, in terms of the importance of longitudinal analysis and big data. 190

Problems remain, however. Some epidemiological studies, for example, explicitly focus on modelling a particular type of impairment in a delimited setting, for instance by assessing levels of lower back pain as a form of disability affecting the working population in Europe. 191 This growing kind of research demonstrates the importance of ‘risk’ discourses linked to impairment that focuses on the consequences of prognosis and diagnosis for economic and bureaucratic measurement. 192 This has been termed an ‘actuarial model’193 but is also linked to the growing political importance of quantification of health as providing evidence for policy and practice. This is evident in public health research and the influence, however subtle, of more positivist theories, implicit in medical models and governance, remains. 194

Finally, our review demonstrated how theoretical developments in how we understand disability have been recently influenced by other social movements, such as those associated with feminism, queer theory, intersectionality and critical race theory. However, the links between social justice theories and inequalities literature on poverty, although influential, have remained undertheorised, and the practical impact on the operationalisation of more evaluative methodologies used in public health remains small.

To summarise, our initial review demonstrated a variety of different models explaining disability, many of which are sensitive to time and place. Consequently, a historical or genealogical reading of these theories and models is important in understanding the evolution of these debates. During this evolution, it is rare for one model not to be influenced by, and to interact with, the other models. The medical model, for example, has successfully incorporated aspects of the more critical debates associated with the social model (see International Classification of Functioning, Disability and Health below). To this extent, any attempt to provide operational definitions can do little more than provide an ideal type. Nonetheless, these ideal types are a useful starting point in beginning to understand the (potential) connection of different models with public health interventions and research.

The medical model

A medical model of disability was the most discussed model in our first scoping review. This is perhaps not surprising, as the other three models were developed in response to the ways in which medicine has viewed disability. In essence, medical models see impairment as a consequence of some ‘deviation’ from ‘normal’ body functioning, which has ‘undesirable’ consequences for the affected individual. Impairment is seen as indicative of an underlying physical abnormality (pathology), located within the individual body, and medical treatment, wherever possible, should be directed at the underlying pathology in an attempt to correct (or prevent) the abnormality. Critics argue that this is a form of biological reductionism which views disability in terms of an individual deficit/problem that has to be fixed, rehabilitated or prevented rather than in terms of being generated by the social consequences of impairment. 195,196 This tension has come to inform how the medical model has been debated.

Disability has tended to be theoretically conceptualised as a physical rather than a mental health problem, at least initially. There is also some debate about whether the medical model should be viewed as a transactional model or systems approach. Llewellyn and Hogan197 argue that a systems approach views development as ‘synergistic’ within the environment, whereas the transactional model understands development as a transaction or exchange between person and environment. These early understandings heralded the later influences of ecological models and the growing importance of science and technology studies in the sociology of health and illness. More recently, (bio)medical models have been used to consider obesity, smoking, violence, risky sexual behaviour and even climate change, but, as we shall see, they are rarely linked to theoretical (and more inclusive) discussions of disability.

The medical model could be seen as especially weak in conceptualising comorbidities or multimorbidities, which is at odds with the idea that many people will possibly experience various forms of impairment during their lifetime. Disability has been seen as an extraordinary, unusual, life-changing event and has often been viewed as an individual personal tragedy. 198–200 Oliver198 explicitly states that the medical model encapsulates both biomedical and psychological perspectives but that the ‘individual medical model’ has medicalisation as a key aspect. Barnes199 views rehabilitation and the norm of the able body as central to the ‘individual’ medical model and the way in which disability is understood. Nonetheless, most theoretical analyses of disability models, despite containing critical references to ‘a medical model’, do not always expound what they understand by it or reflect ways in which the model has changed. 200

Early articles on health, which were informed by medical models, were nearly always linked to measurements such as the tacit models underlying health status instruments or the need for normative reference case against which deficits and deviations could be compared and measured. 201 The earliest medical models were also linked to defining scales of measurement such as those associated with ‘quality of life’. 202 When focusing on outcome measures for QoL, it was, however, rare for studies to consider environment, opportunity or disabling process. 203,204 The focus tended to be on individual conditions, with little attempt to explore how disability could be socially generated.

In 2001, there was an attempt by the WHO to engage globally with disabled people and use their ideas to rethink medical care. 35 The influence of the medical model remained, as evidenced by the continued refinement of the ICIDH, which is now known as ICIDH-2. The papers included in the scoping review do not reveal why the model espoused by the WHO became configured as ‘the medical model’, particularly when there was a conscious attempt to move beyond it.

International Classification of Functioning, Disability and Health

Responding to criticism by disabled people and the growing influence of a more social model of disability and the impact of environmental barriers (see A more social model approach below), the WHO commissioned a revision of the ICIDH-2. 215 This revision attempted to bring together an individual medical understanding of impairment, with an acknowledgement, reflecting more social models of disability, that society disables:

Disability and functioning are viewed as outcomes of interaction between health conditions (diseases, disorders and injuries) and contextual factors . . . Among contextual factors are external environmental factors (for example, social attitudes, architectural characteristics, legal and social structures as well as climate, terrain and so forth), and internal personal factors, which include gender, age, coping styles, social background, education, profession, past and current experience, overall behaviour pattern, character and other factors that influence how disability is experienced by the individual.

World Health Organization222

Furthermore, according to the WHO:12

Disability is the umbrella term for impairments, activity limitations, and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors).

World Health Organization12

The resulting ICF223 is typically represented in a visual diagram in which the functioning of the body or body part, personal activities and social participation are a central triad (Figure 3). 222 Disability involves any dysfunction of impairments, activity limitations or participation restrictions. The arrows are bidirectional to indicate that components of health are interlinked and affect each other. This responded to the critiques of those advocating a more social model of disability, who question the linear relationships implied by the ICIDH-2.

FIGURE 3.

The ICF (reprinted with permission from Towards a Common Language for Functioning, Disability and Health ICF, World Health Organization, 2002, www.who.int/classifications/icf/training/icfbeginnersguide.pdf.)222

Interventions can also be mapped on to this triad, as different interventions can be used for the body, personal activity or social participation. This is why the ICF is also known as the relational or ‘bio-psycho-social’ approach. The ICF also can be mapped on to interventions or preventions (Table 6). 222 This is potentially useful to public health research, and this is an idea to which we shall return.

TABLE 6 - Intervention or prevention

Adapted with permission from Towards a Common Language for Functioning, Disability and Health ICF, World Health Organization, 2002, www.who.int/classifications/icf/training/icfbeginnersguide.pdf. 222

Perceived difficulty	Intervention	Prevention
Health condition	Medical treatment/care Medication	Health promotion Nutrition Immunisation
Impairment	Medical treatment/care Medication Surgery	Prevention of the development of further activity limitations
Activity limitation	Assistive devices Personal assistances Rehabilitation therapy	Preventative rehabilitation Prevention of the development of participation restriction
Participation restriction	Accommodations Public education Antidiscrimination law Universal design	Environmental change Employment strategies Accessible services Universal design Lobbying for change

The literature in our scoping review indicated that the ICF has been richly conceptualised in terms of comorbidities or secondary conditions. 11 However, this has mainly been in terms of risk and a connection to rehabilitation. This is why Rimmer et al. 11 argue that such models need to be interdisciplinary to work. However, Ravesloot et al. 75 found that some categories of the ICF could be mapped on to behavioural change models used in public health promotion. However, they found that neither the ICF nor behavioural change models addressed the reasons behind how people would find ‘meaning’ when participating in interventions. 75 The ICF also continues to be criticised by disabled people. 23,71

Strengths

The ICF was seen in the literature to have a particular value when discussing policy. 224 Advocates of the ICF have argued that it improves on the ICIDH-2217,225 by providing a scientific standard to inform national and international policies on disability at both an individual and population level. To this extent, the ICF has been successfully applied in a range of surveys such as by the WHO (health and disability) and the statistical office of the European Union (Eurostat) (disability and social integration). 226,227 More generally, the ICF has contributed to studies exploring the prevalence of disability and its measurement,228 while also providing the opportunity for comparable data.

The ICF can also be used with other WHO instruments such as the ICD, Tenth Edition (ICD-10) and ICD, Eleventh Edition (ICD-11)229 and an ICF-CY230 specifically for children and youth. Üstün et al. ,231 for example, argue that, although there are many ‘condition specific assessment tools’ (e.g. the Hamilton Rating Scale for Depression232) as well as ‘generic measures’ [i.e. Short-Form questionnaire-36 items (SF-36)], the ICF was specifically developed to counter these ‘data silos’. This is why the ICF is being used to reflect a global public health agenda [i.e. human immunodeficiency virus (HIV), malaria]. The ICF can also accommodate different outcome measures (technical, clinical or patient-oriented) and has ‘linking rules’ to illustrate how to connect health status measures to technical and clinical data or interventions. 233 Cieza et al. 233 explain that the strengths of the ICF are its standard terminology and definitions, an ability to disregard competing and condition specific instruments and the power to distinguish between outcomes and outcome measures.

Although the ICF seems complex in terms of the different ways in which it can be translated, the ways in which people use the ICF can be creative. For example, one study in the review examined the ‘capacity’ of people with psychiatric disabilities to work and measured the gap in terms of their current social participation. 234 In this way, disability is viewed as an environmental construction. The application of the ICF to rehabilitation, in addition to its use globally to collect statistics (i.e. the UN’s Washington Group)235 and to monitor the CRPD, has been particularly successful. 62,236 Bickenbach237 sees the ICF as a ‘bridge’, insofar as statistics are needed as indicators to monitor progress on global policy issues such the Millennium Development Goals and how nations are conforming to legal conventions such as the CRPD.

The link between the ICF and CRPD is not always welcomed by those who take a more critical approach to understanding disability (see A social model approach and Critical disability studies below). However, our scoping review revealed that those working within a more global perspective on disability rights have creatively connected theories such as Sen’s147,151 ‘capabilities’ approach to the ICF149,150,238 and, more recently, to social capital. 239 Furthermore, the versatility of ICF can be seen as an attempt to link it with debates about inequalities or social determinants of health (SDHs),240 in addition to human rights instruments and social justice in global public health. 241 However, our analysis suggests that among those broadly supportive of the ICF, there is uncertainty about how best to connect the ICF to the CRPD or other international instruments and conventions. Baylies242 argues that ideas about ‘participation’ can be used to locate the ICF within discourses of ‘rights, capabilities and human development’ and ‘environment’:

These new elements are specifically intended to link the ICF with the standard Rules on the Equalisation of Opportunities for Persons with Disabilities so as to provide, ‘an appropriate instrument for the implementation of stated international human rights mandates as well as national legislation’ (WHO 2001: 6). In acknowledging the legitimacy of a broadened discourse on disability in terms of rights, inclusiveness and participation, the ICF has enlarged the understanding of the nature of disablement, emphasising the crucial importance of context of the social and physical environment.

Baylies242

Our scoping review suggests that the potential of such an approach is still to be fully realised. 226 Furthermore, tensions have emerged, particularly in terms of how clinicians, bureaucrats and disabled people expect the ICF to do different things. However, overall, the conceptual strength of the ICF is that it has the potential to move from a rehabilitative domain to one informing a broader approach to social welfare.

Potential weaknesses

Although the ICF is an attempt to transcend the medical model, it struggles to escape fully from its associations with it. A systematic review on the use of the ICF, for example, found that most papers were about clinical and rehabilitative use. 243 Applications to public health research are rare, although when used it tends to emphasise a ‘functional’ approach to disability. 213 The perceived association between the ICF and rehabilitation has become a particular social and political focal point in the disability literature for reasons that are not entirely clear. This is despite the links between ICF and CRPD. 221,244 This might reflect a tension between aspiration and practical application. Although the ICF has a broad application,222 its implementation remains narrow. A particular and persistent criticism, for example, is that the ICF is predicated on norms and values that are still fundamentally disablist.

The ICF, despite having considerable influence on defining outcome measures, has been less successful in encouraging an exploration of what happens during an intervention and, in particular, in how measurement is linked to rehabilitation. 38,245,246 A connected problem is the possible confounding of function (i.e. functional limitations or measures) with what it means to live healthily with impairment. 38 This might have particular importance when discussing public health research. Activities of daily living (ADL) and measures of self-reported health such as SF-36 can, for example, confuse function with health. 204 Moreover, the focus on the content of outcome measures entails comparisons. This can sometimes mean that response categories are taken for granted and not linked to conceptual critique. 247 The relationship between health status, biopsychosocial and environmental functioning can, therefore, be unclear. In attempting to make sense of this, Bickenbach248 notes that the ICF is a classification system and neither an ‘assessment instrument’ nor ‘measurement tool’, despite being used as such. He argues:

Despite this, the descriptive qualifiers for Body Functions, Activities and Participation and Environment Factors were scaled, both qualitatively (No problem; Mild; Moderate; Severe; and Complete Problem) but also quantitatively (No problem = 1–4%; Mild problem = 5–24% and so on). Clinicians in the various rehabilitation professions and measurement theorists have developed assessment tools to measure specific Body Functions. Some of these have acceptable statistical properties, are reliable, and are widely accepted by professional communities worldwide. Other such tools have been developed for very local purposes –specific diseases, specialised clinical settings – often primarily designed to regularise professional remuneration or insurance pay-out in specific jurisdictions.

Bickenbach248

Bickenbach goes on to say that the ICF raises issues with the definitions of activity and participation:

The pattern is same: disability is a matter of the body, the person and the person in society. Hence the triads: impairment, disability, handicap (ICIDH and Quebec); and impairment, functional limitation, disability (Nagi). It stands to reason that in the ICF the pattern should be repeated, and it apparently is: Impairment, Activity Limitation, Participation Restriction. But there is a catch. The Activity and Participation classification ‘merges’ the two; or more correctly, the individual categories in the classification are both Activity and Participation categories. But how can Activity and Participation be conceptually different, but identical in terms of their list of categories?

Bickenbach248

Participation and personal factors are especially criticised for being undertheorised. 23 The more critical literature suggests, for example, that the use of the ICF has neglected overarching structural issues, such as the links between poverty and inequality in the creation of impairment and disablement. 242 The use of the ICF in employment fields is viewed as especially problematic, particularly given that disability is conceptualised as a barrier to valorisation. 243 Criticisms, therefore, have focused on how the ICF has rarely been used to challenge or change policy to create a more enabling society in line with the CRPD or social model. 23,242

There are also concerns that the ICD defines impairment as a variation from the statistical norm and that ‘an individual’s capacities are assessed against that of someone without a similar health condition (disease, disorder or injury)’. 23 This raises broader concerns about what it is to be human221,249,250 and about the ability of the medical profession to define what is normal. 251 Kras,252 for example, raises concerns about how public health interventions aimed at disabled people who have autism can become linked to ideas of ‘prevention’ and rehabilitation. Ginsburg and Rapp253 agree and argue that:

Most researchers who ‘count disability’ – demographers, statisticians, economists – are rarely in dialogue with scholars in disability studies, whose concern has been to show how ‘disability counts’ across a range of qualitative fields.

The plethora of visuals, decision aids and assessments associated with ICF is also seen as constraining creativity and innovation and encouraging a rather mechanistic, uncritical application. 239 This is an especially telling critique given the points raised in the previous paragraph.

The recommendation of the WHO and the UN for the ICF to be a universal standard measure is not without its problems, especially given the criticisms of some disabled activists, who are keen to identify theoretical and conceptual weaknesses,254 while arguing that no consensus exists. 39 Those working within more critical disability models argue that there can be no universally applied measures,39 and to think that there can be fails to acknowledge the way in which the ICF reflects a bureaucratic and medical approach divorced from the local sociocultural realities in which people live. 255 The ‘universal’ approach has also been criticised for a lack of sensitivity to gender and ethnicity, in addition to its relationship to western scientific concepts and formulations. 242,256,257 A more human rights-based approach is presented as possible means by which to overcome these difficulties.

The human rights model

Many of the criticisms highlighted above find specific and defined expression in alternative approaches to conceptualising disability. Despite having a long history,258 the human rights model has only recently assumed analytical importance in the context of disability. Nonetheless, it generated the second highest number of papers in our scoping review, taking various national and international forms. 259 The model was initially linked to the 1948 Declaration of Human Rights. 260 Early rights-based models were linked with the political movements of the time, such as civil rights,261–263 feminism264 and children’s rights. 265

Although international treaties incorporated ‘disability’ (see, for example, the 1976 International Covenant on Economic, Social and Cultural Rights266 and International Covenant on Civil and Political Rights267), most early discussions of rights were usually framed in terms of the need for national legislation that made discrimination a crime. Later policy documents such as those from the Disability Rights Commission97,268 and Human Rights and Equality Commission,101,102 supported a human rights paradigm, which eventually became enshrined in legislation in the USA and the UK. The US-based literature focused on the Americans with Disabilities Act (1990),269 while in the UK the legal rights of disabled people were enshrined in the Disability Discrimination Act (1995) which was later incorporated into the Equality Act (2010). 28 In the Equality Act (2010),28 disability was regarded as a protected characteristic, against which discrimination, harassment and victimisation was illegal. The Act also established equality of opportunity and placed a public service duty on public sector organisations to foster good relationships between groups both with and without protected characteristics.

Historically, the 1980s marked the emergence of disability as a global issue. The International Year of Disabled Persons was marked in 1981, and in 1982 the UN published a World Programme of Action Concerning Disabled Persons. 270 By the 1990s, which marked the start date for our scoping review, disability was firmly on the UN agenda and beginning to be mentioned explicitly by conventions such as the International Committee on Economic, Social and Cultural Rights in 1993. There were also mentions of ‘rights models’, with links being made to movements such as the global ‘right to health’ and the health activism of the 1990s and 2000s. There was a strong association of disability with biosocial identities and health inequalities. 271 Our scoping review suggests that, from 2006 onwards, there was a gradual move from general discussions of civil and political rights to more specific discussions associated with the CRPD. 272,273

Researchers and activists involved in the development of the CRPD advocated it use as an explicit ‘new’ human rights paradigm. 274 This meant that research was moving towards a more encompassing, albeit critical, understanding of rights. Most countries have signed up to this international legislative instrument.

Conceptions of citizenship predicated on tacit rights-based approaches have been increasingly applied to understanding the difficulties facing disabled people. 275 For example, the importance of active agency in decision-making by young disabled adults is discussed in the context of transitional care. 276 Disability activists and academics have also taken up rights-based approaches, but this has not been without tensions, particularly among those who espouse a more ‘international’ disability approach12,200,277 and those who see rights-based approaches as failing to fully embrace emancipatory paradigms. 23,71,278,279 Sayce and O’Brien280 argue that ‘rights’ represent both risks and rewards for disabled people, especially if they become medically defined or disconnected from practical outcomes (see also Sayce281).

Early work in disability studies and activism examined what a move from ‘needs based assessments’ to ‘rights based assessments’ would look when applied to independent living. 282 Drewett283 concluded that, although ‘rights’ are presented as ‘fairer’ than the ‘needs-based character of welfare policies’, it is not clear how such an approach would change the delivery of health and social care. This is why some argue for legislative protection, alongside more inclusion in social life, which is informed by normative values and assumptions. For Rioux and Heath,260 quoting Quinn et al. ,284 a more rights-based approach can be defined as follows.

Importantly, it means locating any problems outside the person and especially in the manner by which various economic and social processes accommodate the difference of disability . . . The debate about disability rights is therefore connected to a larger debate about the place of difference in society.

This quotation suggests a more fundamental tension between ‘recognition versus redistribution’,260 which has been identified by several authors. 285,286 Concerns have also been expressed by the demands of both negative and positive rights. Although civil and political rights are understood negatively in terms of protection from discrimination, they do offer legal redress. Cultural and social rights are understood more positively, but, because they are often enforced through the ‘redistribution’ of resources, they become threatened in times of austerity. 260,285,286

A social model approach

Papers included in the scoping review, regardless of whether they are for or against a social model of disability, were widely seen as foundational to disability studies and advocacy. 198,306–309 A social model of disability developed from the experiences and activism of disabled people in the UK from the early 1970s onwards. It was also heavily influenced by activists in the USA and the independent living movement. It countered an individual medical model that viewed disability as a problem of/or caused by impairment, which had individual consequences (see The medical model). It also reclaimed the experience of disability from the expertise of health-care professionals and social workers. 199,310–312

Disabled people’s activism was founded on the rejection of professional control over their lives. Barnes313 explains how up until the late 1960s, ‘severely disabled people’ did not have access to disability-related welfare and their only options were residential care or ‘poverty and social isolation in the community’. Welfare entitlements, for example, existed only if a person had gained injuries through employment-related activities. In the UK, therefore, early activism was linked to ensuring economic welfare and attracted key disability activists, including Paul Hunt, Vic Finkelstein, Ken Davis and Maggie Hines. 310,313 All were founders of the Union of the Physically Impaired against Segregation (1976) and were committed to the idea that impairment did not ‘disable’; rather they argued that:

It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.

Union of the Physically Impaired Against Segregation314

These insights were primarily taken up and further developed along materialist and Marxist lines by Vic Finkelstein,315 Mike Oliver72,316 and Colin Barnes. 313,317 According to Oliver:

This new paradigm involved nothing more or less fundamental than a switch away from focusing on the physical limitations of particular individuals to the way the physical and social environments impose limitations upon certain groups or categories of people.

Oliver318

Disability is thus understood as a form of social oppression generated by barriers, (dis)ableism and exclusion from social life. 23 This interpretation has changed over time in accordance with disabled people’s activism for social change and inclusion.

Early studies focused on barriers in the physical environment and disablement in social life. This changed by the early 2000s, when key thinkers began questioning the dualism between impairment and disability. 307 Goodley319 argued that intellectual disabilities were socially constructed. Shakespeare and Watson stated that disability was caused by bodies (biological and social), as well as by restrictive social barriers. 307 Interesting debates occurred among key thinkers,279,308,309,320 with a concern to make the social model more ‘relational’, and an emphasis on innovation and dynamism. 72 These discussions moved the social model in interesting directions, such as conceptualising what a sociology of disability would look like; the concept of ‘impairment effects’;309,320 psychoemotional disablism;69,321 and intersectionality with chronic illness and gender. 131 Despite this, the social model maintained its importance in unifying people to ‘fight’ against social oppression. 322,323

Critical disability studies

Critical disability studies is a more recent development. It is also difficult to define, and the boundaries between CDS and the social model are especially blurred. 357–359 CDS is informed by postmodernist and poststructuralist perspectives, such as those offered by Foucault360 and Derrida,361 which question the foundations of concepts such as ‘impairment’ and ‘disability’. This allows for considerable flexibility. In addition, CDS argues against an overarching ‘biomedical’ understanding of disability, focusing instead on the cultural and linguistic construction of ‘disability’ and disableism. 312 It can, however, take on ideas of emancipation or rights-based approaches, although this does not necessarily mean that everyone working within CDS associates with these ideas.

Advocates of CDS argue for a conceptual ‘paradigm shift’,362 which questions the dualism of impairment and disability. CDS is also strong on intersectionality and has links to, for example, critical ‘race’ theory. 363 Critical realism is central to understanding CDS,364 although there is little agreement on what this might mean in practice. Consistent themes, however, include disregarding naive realist/empiricist approaches355,365 and a focus on viewing an individual as simultaneously being part of biological, psychological and social worlds. 366,367 Meekosha and Shuttleworth368 argue that CDS is about rethinking how disabled people become marginalised by using critical social and cultural theory, although in their case, this is aligned with an ‘emancipatory focus’. For Meekosha et al. ,369 critical engagement consists of:

the irreducibility of the social to empirically derived ‘facts’; (2) the necessity to link theory with praxis; (3) a reflexive awareness of the historical development of our own thinking; and (4) an openness to and dialogical engagement with ideas emerging from diverse cultures.

Critical disability studies aim to reframe the ‘disabled bodies/minds along the lines of capacity, potential, interconnection and possibility’. 370,371 CDS has been especially influential in discussion about the origins and operation of ableism and normative assumptions about a functional body, the connection between sexuality and disability, including queer studies, and ‘mad studies’. 372,373 ‘Mad studies’, for example, is an ‘umbrella term’ bringing together critiques of psychiatric diagnosis and interventions with ‘survivor’ movements374,375 to argue for more equal representation and involvement in health policy and practice, thereby politicising a need for not only user involvement but control and representation. 376,377

Conclusion

The scoping review revealed that theories and models are rarely used in a ‘discrete’ way but rather create a broad ranging and often polemical debate with no fixed point of reference. This is the first challenge facing those who wish to connect public health research with more inclusive approaches to disability. The different models are presented in perhaps a more static or idealised fashion than is the case in practice, although this was a conscious choice to make the models accessible and to highlight their main thematic elements. The medical model, for example, has changed considerably over the years and has been refined to take account of ongoing critique. Debates, therefore, are dynamic, interdisciplinary and engage with each other, creating fluidity, which is sensitive to practical applications and theoretical development. Current theory, for example, has become more sensitive to the life-course as different elements of identity, belief systems and definitions of disability struggle for predominance.

This flexibility is reflected in how research on disability has been conducted, although the more social models and CDS seem to have had less influence on public health research than, say, the ICIDH-2 or ICF. The ICIDH-2 and ICF are, of course, more closely aligned to the study designs on which evaluations of public health interventions are based. This perhaps explains the interest of public health research in measurements of disability and a movement towards amalgams of definitions based on models or combinations of models so that they are more inclusive of variations in impairment across the life-course. 64,172 There would, however, seem to be less interest in this in theoretical development and the more critical approaches to disability. This creates potential tensions. The need for standardised, comparable measures of disability could be in conflict with the diverse experiences associated with disability and fail to accommodate intersectionality, the impact of the life-course and fluctuating conditions. Experience and skill are needed to apply the nuances implicit in many models, and the historical struggles of public health to engage with more critical approaches to disability might make this problematic.

Public health research is not alone in finding it difficult to reflect disabling experiences. The scoping review, although demonstrating how most models are developed in opposition to ‘a medical model of disability’, also provides evidence about its residual influence. The ICF, for example, could be seen as a classificatory, administrative model that attempts to ensure that medical norms have a more social meaning. 12,389 The scoping review, however, found little evidence of a connection between this arm of the WHO and the WHO plan of action on the SDHs. 390 Our scoping review in particular indicated that measurements of disability are not especially well aligned with definitions of disability found in various paradigms and theories. Examples include the environmental creation (prognosis) of impairment effects, sociocultural barriers to health-care access or how disability discrimination and disablism increase exposure to social determinants of poorer health. 15,289,391,392

To address the commissioning brief, we need to be able to translate the models and theories to work practically in the evaluation of public health interventions. Only the ICF has been easily explained and applied to differing contexts. This perhaps explains its popularity. To focus on only the ICF, however, would ignore the detailed and sophisticated critique of its use and the value of other models outlined by the scoping review. Consequently, an important next step in our analysis is to think about how different models could be visualised, applied and used to critically evaluate interventions in line with various definitions of disability and their measurements. We also need to connect with the theoretical approaches used in public health. We realised, therefore, that it would be useful to define what a public health of disability should look like and to try to link together definitions of disability and public health. This is unlikely to provide a definite answer, but, in keeping with our iterative intent, contributes to a more reflexive framework that has a range of options with which public health research could engage.

Mapping of models and theories

The medical model connects with public health’s interest in describing populations, measuring outcomes and developing interventions to improve (and rehabilitate) well-being. There is, however, a strand of public health thinking that connects with the more critical models of disability. Ecological approaches, for example, are evident in both public health and disability debates,393 although there is surprisingly little connection between the two. For example, one of the most widely known models used in public health, Dahlgren and Whitehead’s ecological model of the determinants of health,126 was not mentioned by any of the models or theories of disability included in the scoping review.

The ecological approach is typically visualised as beginning with an individual and views health as shaped by the individual’s interactions with their micro-, meso- and macro-environments, ranging from intimate and community relationships to living and working conditions to wider economic and political processes. Addressing social inequalities in health is, therefore, seen to require action on inequalities operating at these multiple and intersecting levels (Figure 4). Throughout the scoping review, it became clear that some disability models worked to a similar set of ideas, which connected individual, social-relational, social-communitarian and macro levels of analysis. 355,365 This creates potential for developing a more inclusive public health agenda.

FIGURE 4.

The public health ecological model. Reprinted with permission from Dahlgren and Whitehead. 126

The ecological model can be further refined with reference to the work of Graham and Kelly,394 who argued that interventions are underpinned by one of three approaches to reducing health inequality:

• Disadvantage: improving the absolute position of the most disadvantaged individuals and groups.

• Gap: reducing the relative gap between the best- and worst-off groups.

• Gradient: reducing the entire social gradient. Consequently, when implementing (and evaluating) any public health intervention the aim – theoretically and practically – is to tackle health inequalities and improve equity. The ways in which this can be done include focusing on the most disadvantaged in a society (such as disabled people); reducing inequalities between the most healthy and least healthy; or improving the overall health in a society on all levels so that the entire social gradient changes.

The ecological model has various expressions in public health, and some research has attempted to connect it to an (implicit) understanding of disability. 395,396 Most of these examples align it with more medicalised understandings of disability395,397,398 and use the ecological model to chart ‘risks’ for ill-health, impairment or disability based on epidemiological measurement or SDHs. 399 Nonetheless, ecological approaches prioritise the SDHs,6,400 which can be useful when making sense of disabling experiences and the processes of disablement, particularly when attempting to understand the link between poverty, impairment and disablement across the life-course (Figure 5 provides a visual representation of this).

FIGURE 5.

Social determinants of diversity.

The SDHs have become especially influential following the publication of the WHO Commission for Social Determinants of Health. 401–403

The social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities – the unfair and avoidable differences in health status seen within and between countries. 404

The WHO is currently working to develop indicators and measurements on the SDHs for the UN’s sustainable development goals (SDGs). 405 Focusing on the determinants and maintenance of inequalities is especially valuable when discussing disability and links with more rights-based and social model approaches. Elements of a more medical model, however, remain in public health perspectives. A recent King’s Fund report, for example, when using a social determinants approach, measures health and health inequalities in terms of disability-free life-years. 406

Disability, poverty and inequality models

In the scoping review, the relationship between poverty (inequality) and disability was identified as foundational to more critical models of disability. 12,327,407–409 Such models emphasise a strong connection between inequalities and disablement and a particularly strong association with ‘entrenched poverty’. These concerns are reflected in the public health literature and this is another important point of potential cross-linkage. For example, children living in poverty who already have an illness or health condition are particularly susceptible to disability. 19,399,410 Income inequalities have also been found to be linked to conditions such as mental health or obesity. 411 Furthermore, disability can affect families in terms of the extra health costs of impairment, time spent caring and loss of income,409 and, more generally, families that have a disabled family member are more likely to live in poverty. 1,412

Consequently, this experiential and statistical association between chronic poverty and disability, as well as its intersections with other dimensions of disadvantage,413 would seem fundamental to understanding the processes of impairment and disablement408 and their wider complexity in differing local and global contexts. 414 Yeo,408 for example, argues that a person with disabilities faces discrimination, which leads to multiple forms of exclusion. Institutional, environmental and attitudinal barriers, for example, result in disabled individuals not having the same opportunities as everyone else, which means that they are more susceptible to poverty, which in turn negatively affects their health. Whitehead et al. 415 and Yeo408 both view this as a cyclical or spiral dynamic of political, sociocultural, economic and environmental processes. Adapting the above in terms of a multidimensional matrix (not necessarily cycle or spiral) means that the situational factors linked to impairment become embodied and potentially (but not necessarily) linked to disability discrimination, which in turn further increases susceptibility to inequalities and the possibility of chronic deprivation. Setting out the factors that can lead to inequality, ill health and disease416 also helps to identify what constitutes enabling environments, explaining why some people who have impairments thrive or are resilient and flourish (Figure 6 provides a visual representation of these arguments).

FIGURE 6.

The chronic deprivation/entrenched inequalities matrix (adapted from Yeo408).

Poor health, mental health issues and/or impairments have all been identified as factors that increase inequalities. 417–420 MacInnes et al. 420 note that a plethora of issues needs to be tackled but that ‘early interventions’, such as those in workplace settings to prevent physical impairment or mental health issues, in addition to more ‘responsive health care systems’, can contribute to tackling inequalities. Similarly, it was noted that (vocational) rehabilitation can help to ensure that people do not become incapacitated after sickness leave. 409,420,421 This is consistent with a public health agenda and explains why inequality models linked to disability have relevance when evaluating public health interventions, particularly when assessing the potential impact of interventions, and this can be joined with an analytical framework by which to explain disabling experiences.

Difficulties, however, begin to occur over the use of metrics that are used to inform connections between disability and inequalities. As we have seen (see Chapter 3), those who assume a more critical perspective criticise such measures as (dis)ablest and failing to capture the lived experiences of disabled people, while implicitly making assumptions about burden and normality. Measures facing particular criticism include disability-adjusted life expectancy, healthy life expectancy and disability-free life expectancy. 422 As noted, all are seen to reinforce a negative understanding of disability by focusing on the difficulties associated with having a disability rather than on the potential of emancipatory activities to change the social environment. Such measures are also criticised for struggling to accommodate a more dynamic account of disabling experiences, in which disability is likely to be experienced by most people at some time in their lives. 1 Furthermore, the link to inequalities or understanding disadvantage can sometimes be oversimplified, especially if interpreted within the context of a short-term, narrow, cost-focused analysis linked to disability measures, rather than the long-term need for accessible and appropriate care. 423

Recent critical literature from disability studies would prefer to explore inequalities by questioning the able-bodied norms and values which they see as implicit in standard health-related measures. This critical literature also notes a perceived all-embracing concern with ‘ability’ to work,290 adherence to variations of a capabilities approach that still focuses on functioning413 or a misplaced emphasis on producing fine graduations of debility and capacity. 383 This is why, when exploring inequalities and disability, more critical debates emphasise the importance of considering the norms and values implicit in interventions and evaluations designed to measure their effects, alongside the broader value of more inclusive practices associated with a human rights-based approach.

Human rights and public health

A human rights approach considers individual factors, social participation (including family life), and environment and access, within a context of macro-structural factors. 22 Such an approach is probably best reflected in the CRPD (see Chapter 3), which can be mapped on to ecological approaches linked to public health and disability (Figure 7). Not only does a rights-based approach connect well with a public health moral commitment to equality, but it can also support the ethical, practical and methodological decision-making required when undertaking research. 424

FIGURE 7.

Modelling the CRPD.

Public health interventions could be seen to facilitate social justice and equality. 101,425,426 The Joseph Rowntree Foundation’s work to ensure a dementia-friendly city or rights-based interventions to improve welfare rights advice, for example,427 demonstrate the value of a more inclusive paradigm, informed by a respect for rights and a sensitivity to disabling experiences. However, evaluation designs for public health interventions typically remain linked, epistemologically and ontologically, to a (positivist) medical model. 426,428 Interventions, and the research evaluating them, can be disempowering, particularly when individual experience is denied429 or a population is regarded as vulnerable and their rights are framed paternalistically in terms of protection and within able-bodied norms. The scoping review suggested that disabled people often find themselves excluded from research and, in particular, from trial-based research on methodological grounds because they are viewed as ‘hard to reach’; their inclusion is seen as raising difficult ethical issues, especially about consent; or their inclusion would require too much adjustment when generating a sample. 51,59,92,430 Tackling such principles of inclusion are often at the heart of human rights-based approaches:

By inclusion in mainstream research we mean that persons with disabilities are welcome to join most research studies (not just studies about disability); they are treated with dignity and respect; studies are designed and accommodations are provided as needed to allow them to participate (without threatening the integrity of the research); and they are not excluded without a reasonable justification (Iacono, 2006; McDonald, 2012; McVilly and Dalton, 2006). Inclusion also involves being active partners in research, so that the voices of people with disabilities in research can be heard, and research about them is meaningful to them.

Charlton327

A human rights-based approach to health interventions is becoming increasingly applied to ‘persons with disabilities’, as illustrated in the fields of health advocacy,90,431 rehabilitation,303,304 psychiatry or behavioural support. 432 Feldman et al. ,47,90 for example, used the CRPD’s Article 25 on health to develop health self-advocacy training and intervention for persons with intellectual disabilities based on the ‘3Rs’, that is, rights, respect and responsibilities.

Despite the increasing emphasis on public and patient involvement, a rights-based approach has not had a great deal of impact on public health research. 426 The CRPD is, however, highly applicable to Graham and Kelly’s394 account of inequalities, and, by combining the two, it is possible to generate a checklist assessing the inclusivity of public health interventions and research. 433 One can, therefore, use the CRPD to assess the individual factors that are included in an intervention and also what kind of intervention it is, in terms of how it addresses the gap, disadvantage or gradient394 (Table 7).

A rights-based framework and an ethical–empirical decision aid

Table 7 establishes the potential for developing a human rights framework for public health interventions, in a way that could accommodate the complexity and challenges of capturing the disabling experience and reconciling it with the concerns of public health. We are particularly mindful that the human rights approach was respected by proponents of the four models outlined in Chapter 3. In our scoping review, we also noted the move towards thinking of ‘health’ as a right and how, for example, ‘personalisation’ and ‘choice’ were becoming especially prominent in health- and social-care discourses. 24,88,434 This, and the discussion above, informed our decision to explore a rights-based ethical framework based on the CRPD. In particular, we felt that Article 3 was inclusive of ethical principles relevant to public health and public health research and committed to the duty of equality, while also emphasising life-course, intersectionality and gender. Article 3 specifically notes the following:

1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

2. Non-discrimination;

3. Full and effective participation and inclusion in society;

4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

5. Equality of opportunity;

6. Accessibility;

7. Equality between men and women; and

8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identitiesFrom Convention on the Rights of Persons with Disabilities, United Nations, © 2006 United Nations. Reprinted with the permission of the United Nations22

Article 3 connects well with experiences of disability by adapting an inclusive approach and ensuring that experiences are part of mainstream discussions in a meaningful rather than tokenistic way. Dignity, for example, cannot stand alone but is grounded in other facets of mainstreaming disability (Figure 8). A member of our project steering committee, Professor Peter Beresford, asked us to envisage models as three-dimensional structures. If one views accessibility as the base of a stepping-stone structure, it must be considered before equality of opportunity. That in turn provides a stepping stone to ensuring respect for intersectionality. This approach equally respects a social model perspective on social justice and a critical disability reflection on interrogating what inclusion and exclusion of (dis)ablism means.

FIGURE 8.

Modelling Article 3 from the CRPD.

If an intervention, and the research evaluating it, is respectful of disability rights, it can be related to several components of the CRPD and scored accordingly (Table 8). Ethical and empirical design could thereby become mutually reinforcing, whereby ethical design leads to empirically robust public health research that addresses disabling health inequalities.

This forms the basis of our (ethical) decision aid/checklist, which can be further strengthened by being considered in relation to the Reach Effectiveness Adoption Implementation Maintenance (RE-AIM) framework435 and its concern with reach, effectiveness, adoption, implementation and maintenance. One of the strengths of RE-AIM is its orientation to the evaluation of interventions in real-world and complex settings in accordance with robust methodologies. 435 RE-AIM can also be easily mapped on to the CRPD, with five concepts having particular relevance, namely dignity, inclusion, intersectionality, accessibility and equity (Box 3).

A simple scoring system could help one to understand how well rights are being implemented. For example, a rating-scale such as the Pragmatic Explanatory Continuum Indicator Summary436 would give an evaluation or score of an intervention and how well research evaluating that intervention respected ethics and the equity of persons with disabilities (Table 9). A score of 0, 0.5 or 1 (100%) can be given.

The use of outcome measures in public health and their relevance to different types of disability

We end this chapter with a practical case study, which explores how our decision aid could relate to measures commonly used in public health research. In Chapter 3, we noted how many of the models and theories of disability were formed in opposition to the medical model. A particular ethical and empirical issue was the use of potentially insensitive measurements, such as DALYs,163 which struggle to accommodate the different social and political contexts of ‘being’ disabled. As we have seen, exclusions create disability, and social inequalities exacerbate disabling effects. This explains why concerns have been raised about the possible relationship between measurement and medical rehabilitation, along with the imposition of able-bodied norms. 290 Critics have also pointed out that commonly used measures struggle to capture temporality or culture,437,438 while also noting that the difficulty of applying some measures to the experiences of disabled people is used to justify exclusion criteria, with little consideration of the extent to which support aides would enable greater inclusion. Consequently, such concerns raise doubts about the validity and reliability of the evidence presented when such measures are used. 172,439 It is, therefore, important to be mindful that a public health landscape that is sensitive to disability does not replicate this. Our discussion illustrates how using models and theories of disability can inform the use of our evaluative tools and begin a critical reflection on the norms and values behind the measures that we use. Our discussion is exploratory, offering an initial introduction. The lack of an informed evidence-based discussion makes this necessary, as do the norms of current practice, which often uncritically apply outcome measures without considering their relevance to the experiences of disabled populations. There are, however, exceptions, and a review of measures and their relevance to childhood neurodisability provides a potential template on which to base future work,440 although care would need to be taken to avoid accusations of ableism. More critical models of disability, for example, would wish to replace ‘neurodisability’ with ‘neurodiversity’.

Consequently, and consistent with our broad approach, our case study specifically considers the applicability of outcome measures to different types of disability and the extent to which such measures are inclusive and accessible, respect dignity and are able to capture intersectionality and equity. To this extent, our concern is thematic, to illustrate the difficulties facing more inclusive research practices. We acknowledge that these practices would need to take account of methodological concerns, such as the meaning of different types of measures and what they aim to assess, while also critically engaging with the often complex relationships between definitions of well-being, QoL, health-related quality of life (HRQoL), functioning (including social, physical, emotional, participation) and health utility. At present, such relationships tend to be confused and the conflation of functioning and well-being concepts within instruments, for example, is common.

Many measures are either generic, focusing on QoL (SF-36 or Health of the Nation Outcome Scale), and/or disease-/condition-specific (Hamilton Rating Scale or Beck Depression Inventory focus on depression), or they focus on comorbidities (Functional Comorbidity Index) and/or multimorbidities (Cumulative Illness Rating Scale and Charlson Index). There are also self-reported outcome measures that focus on pain (the short-form McGill Pain Behaviour scale), pain behaviour (Non-verbal Pain Scale) or the extent to which pain affects function441 or ADL. 439 Furthermore, there are measures that focus on well-being linked to mental health (i.e. the Warwick–Edinburgh Mental Well-being Scale) or how well people with mental health problems function in social situations (i.e. Social Functioning Questionnaire). There are also specific disability measures, which have been developed mainly in rehabilitative contexts, for example, those linked to traumatic brain injuries (Disability Rating Scale or Independent Living Scale). Although many measures focus on functioning, several now focus on capability and what people can do. Common indicators focusing on capabilities are linked to Nussbaum’s or Sen’s models152,153,442 (e.g. Measures of Wellbeing and Capability for Use in Economic Evaluation,443 Novel Multi-dimensional Patient-Reported Capabilities Instrument for Mental Health Research and Policy444), but also increasingly to the work of Robeyns,148 who provide a possible connection to human rights and social justice rather than a focus on functionality. 149,150

To explore the value of such outcome measures in capturing the diverse experiences of disability in public health settings across the life-course, we focus on childhood physical disability, intellectual disability, autism, chronic illness [e.g. multiple sclerosis (MS)], dementia and depression. Our analysis is informed by the need to measure, and the insights provided by, a more critical approach to disability.

Quality-of-life measures attempt to assess well-being from biological, psychosocial, social, emotional, physical, cultural and spiritual aspects of life. Common outcome measures include HRQoL; the Human Development Index; gross national happiness; ADL; variations of the capabilities approach; and the Social Progress Index. EuroQoL is a standardised European HRQoL measurement tool on which the European Quality of Life-5 Dimensions (EQ-5D™) questionnaire is based. The EQ-5D is used in a variety of settings, and since 2009 has been part of NHS quality assurance. The National Institute for Health and Care Excellence (NICE) has also recommended the use of the EQ-5D to (1) carry out population-level surveys; (2) ensure the cost-effectiveness of health technology assessments; and (3) measure conditions or health status across time in services from the perspective of patients. 445,446 Alongside the EQ-5D, the EuroQol visual analogue scale (EQ-VAS) and EQ-Index have also been developed.

Moving forward

When thinking about how measures can be adapted for use in public health research, we note the need for inclusive, generic measures that reflect experiences of living with disabilities and that transcend straightforward notions of embodiment438 and physiological functioning. This would help to understand how ‘problems’ with impairment and health can be linked to social, economic and political barriers as well as to a lack of access to health and social care. Measures, for example, ignore how the environment could be creating disability rather than the individual impairment. They demonstrate a particular lack of connection to stigma and discrimination and how these could correlate with health inequalities. It could be feasible, however, to develop an outcome measure examining how an intervention tackled barriers, enabled participation or encouraged participation. 150 We would also hope that outcome measures would focus on acceptance and diversity, which in turn would help to develop a more critical understanding of capability and perhaps one that is able to critically engage with the use of the WHO/ICF as the sole standard for measuring and screening for disability. We also hope that measures would engage with how people understand their identities and what normatively becomes important for them and their families. Inclusion and accessibility, however, remain an ongoing problem and the adaptability of measures for use by people with a broad range of different disabilities is underdeveloped.

Conclusion

This chapter discussed the potential of an operational decision aid to facilitate more inclusive and methodologically robust research practices. In doing so, we have attempted to make a connection between the theoretical models used to understand and define disability and paradigms associated with public health, in ways that support methodological rigour, ethical engagement and respect for personhood and the rights of the individual. The more critical literature is especially sceptical about the value of public health research in empowering people with disabilities. These criticisms need to be addressed, particularly given that measurement and classification continue to dominate debates. There is not a great deal of enthusiasm among those assuming a more critical voice to engage with public health, which is often treated with suspicion as a form of normalisation and which thereby denies the experiences of disabled people.

The idea that interventions can be simultaneously disabling and enabling is an important consideration, as is an acknowledgement of how interventions and research can (implicitly) embody ableist assumptions. This provides a theoretical basis from which to consider inclusivity, informed by a more rights-based approach to disability. This has many advantages, including a commitment to locating the individual within their broader social context. It is also sensitive to life-course and, more generally, to intersectionality and inequalities, thereby providing a potential bridge between models and theories of disability and more ecological models and theories about the SDHs that inform public health. We are mindful, however, that a more inclusive, rights-based research approach needs to produce methodologically rigorous research. The RE-AIM framework and its commitment to evaluating real-world, complex interventions has a particular value in supporting this. Our exploration of commonly used outcome measures investigated further the importance of methodological rigour and offered potential ways forward when rethinking outcome measures to ensure that they are disability-sensitive.

In the second stage of the project, we used these ideas to try to understand how different models and theories of disability linked up to the current state of research in public health. By referencing our rights-based empirical and ethical decision aid, we explored the extent to which current public health research is inclusive and able to capture the experiences of disabled people. In grounding our account in the current realities of research, our analysis was able to provide a more realistic account of how best to make public health research more sensitive to the experiences of disability. Our intention was to offer a critical discussion about the value of adapting a more socially oriented model of disability and to assess the practicalities of defining appropriate research questions that adapt inclusive sampling strategies, use relevant outcome measures and establish appropriate user involvement and preference.

Generic reviews of public health interventions

The 30 generic public health reviews of interventions were based on the findings of 668 studies. The lowest number of studies included in a review was two and the highest number was 67 studies. We found no reviews that were wholly and explicitly inclusive of disability, mainstreamed disability or used disability theories or models. None, therefore, was assessed a having green light and, to this extent, our classificatory system was not especially helpful when assessing generic public health interventions. Some of the studies, however, could be regarded as nominally inclusive and we have given these studies an amber ranking. We outline the chosen reviews in Table 10.

The reviews reflected a broad range of interventions, relevant to different stages of the life-course, and a mix of preventative strategies and health promotion. Each review had a policy focus of improving health in general, which at least in theory could have included people with disabilities. Three inter-related themes explain why this did not occur:

• The nominal inclusion of disabled people, while sometimes mistaken for mainstreaming, becomes the basis of analytical exclusion.

• The theoretical and methodological disconnects with the disability literature make it difficult to produce meaningful findings that are relevant to the experiences of disabled people.

• There is confusion over what is meant by ethical engagement and social inclusion when discussing mainstreaming.

Appraising and assessing public health research studies

Our scoping reviews of interventions demonstrated a lack of disability-inclusive research in both general public health interventions and those more specifically associated with disability. There was little connection with the more critical models of disability and there was a residual tendency to treat disability as a problem or burden, while failing to accommodate variability, intersectionality or comorbidity. Our scoping of models of disability indicate that rights-based discourses are becoming increasingly influential. Some authors advocated the use of CRPD as an ethical foundation for inclusive research,424 although there was no consensus on how to implement this. To explore this further, we illustrate the potential of the decision aid outlined in Chapter 4 by applying it to a selection of individual studies included in the two reviews of interventions. Using insights from our earlier scoping, we were especially interested in life-course and fluctuating conditions, the role of intersectionality, and the use and relevance of outcome and effectiveness measures.

In selecting the reviews, we decided to focus on a cross-cutting public health and disability issue, namely, physical activity. We reasoned that such studies would be easy to access and include a wide variety of outcome measures. Following discussion among the review team, we identified two recent reviews. The first was a generic physical activity intervention, inclusive of 44 studies. 133 The second review focused on physical activity for older people with dementia and included 17 studies. 134 We again used a traffic-light system in which we considered inclusion (green), nominal inclusion (amber) and exclusion (red) across the categories of dignity, inclusion, intersectionality, accessibility and equity. Using a scoring system of green = 1, amber = 0.5 and red = 0, a total score was given for each study. These scores were informed by the research team’s initial assessment of the study and from correspondence with the authors of the generic public health review.

Assessing public health interventions: school-based physical activity programmes

We begin by discussing the studies that make up a generic public health review on physical activity and provide an assessment of the individual papers, in accordance with our decision aid (Table 12, based on studies in Dobbins et al. 133).

The settings for these public health interventions were mostly high- to middle-income countries. Physical activity primarily focused on the prevention of obesity in children and young people. A total of 44 RCTs were included. A total of 24 of these were based in the USA and the rest were located in Australia (6), Belgium (3) and six other European countries (France, Greece, Portugal, Spain, Switzerland and the UK), all of which contributed one study, in addition to Canada, India, Mexico, China and Hong Kong, all of which also contributed one study each. 133 The studies dated back to the 1980s, and the early US studies had particularly large samples. The 44 studies comprised 36,593 participants, including young people, families, teachers, schools and communities. 133 Most of the trials were longitudinal, usually > 6 months in duration, with many of the US studies lasting several years.

When assessing these public health studies we noted three inter-related thematic observations from which to explore the potential of an inclusive disability research agenda, namely, linking theory to empirical design; disability and mainstreaming; understanding intersectionality.

Assessing public health interventions focusing on disability: physical activity levels with a diagnosis of dementia

Many of the interventions outlined in these studies were set in institutional settings such as nursing homes, community homes or long-term care facilities. Few interventions focused on community settings and this raises an interesting point about the extent to which such a focus was ‘disability sensitive’ and reflected the ‘real-world’ changing demographics and policy implications of impairments. 21,566 The studies focused on physical activity, believing that it ensured a better QoL for those at risk of dementia. 134 Dementia, although measured using a range of subjective and objective criteria, including self-report, generally focused on functional status consistent with a more medical model of disability. Table 13 provides our assessment of the studies, according to the scoring system identified above.

Most of the 17 settings were located in middle- to high-income countries such as the USA (4), Brazil (3) and France (2). European countries such as Germany, Spain, Belgium, the Netherlands and Italy all had one study, as did Canada, Australia and the Republic of Korea. Most studies had small sample sizes and few studies were longitudinal in nature. The total number of participants across the 17 studies was 1163. Fox et al. 134 explain that their review focused on RCTs, non-RCTs and quasi-randomised trials, with 12 studies using two groups (one a control) and the other five using three groups. When assessing the interventions, three themes emerged as important in explaining studies’ approaches to disability, namely, the clinical nature of the interventions, the use of outcome measures and the implication of this for the study’s findings; the ethics of participation; and inclusion, intersectionality and inequalities.

Conclusion

Public health interventions struggle with mainstreaming. Inclusion has tended to be nominal, and disability theories and models have rarely been considered or used to inform the design or conduct of the studies included in scoping. Studies did privilege certain impairment types and disability groups over others. Severe forms of disabilities, rare forms of disabilities and intellectual disabilities were often excluded. The lack of inclusion of the d/Deaf population and those with visual impairments was especially notable. Disability was generally viewed as something that had to be avoided and prevented. Most research, therefore, tended to view disability in terms of burden or economic cost. Intersectionality was also poorly debated, as was the potential for more participatory and emancipatory forms of research. Similarly, much of the research failed to connect with ideas about how the social, political and economic environment could create disability. Disability tended to be seen as an individual problem. Nonetheless, we did not find any evidence of accommodation, which jeopardised the robustness of research evidence. However, more often than not, disability was tacitly used as a reason to exclude people with disabilities. Their inclusion was seen to overcomplicate the research, although the myriad outcome measures used in many studies suggest that the commitment to simplicity might be partial. The studies focusing on dementia were more likely to engage with accommodation, although inclusive strategies did not always consider dignity.

Our decision aid/checklist, outlined in Chapter 4, while offering the basis for a critique of the current literature, also offers potential solutions to the problems identified in our scoping review. Public health research, as reflected in the reviews of interventions, struggles to adapt a more inclusive approach to disability, which is reflected at different stages of the research process. To this extent, it could help to improve the capacity of public health research to engage with disability. Disabled people, for example, often find themselves excluded from research, and, if they are included, analysis struggles to offer a meaningful interpretation of their experience.

The meaning of public health

All stakeholders accepted the importance and potential of public health. A disabled female participant viewed it as being ‘of generic importance to all of us as a society’. Public health was seen to have a broad agenda. Often, participants made links to the prevention of specific conditions such diabetes mellitus or interventions associated with smoking cessation. They also spoke of the success of vaccines in eradicating disabling conditions such as polio. Many, however, saw the success of public health as one of its problems, by citing the example of people living longer, as one disabled participant noted.

It has implications for the type of society that we live in . . . it’s not just a medical problem. It’s a social problem as well.

A holistic understanding of public health was expressed as the ideal, both for disabled participants and professionals, as one professional’s comments demonstrate.

I mean public health, for me, is all encompassing, from prevention to awareness of what helps to keep us well. And promoting good health, through to living with whatever condition you have in a healthy well way; and it takes into account all of the broader things in life that impact on physical wellbeing and mental health wellbeing, from the environment that you live in to your upbringing, to your circumstances, to culture, to disability, all of those bits. That’s what it means for me; and it’s the messaging that goes around that and getting people to access things that enable that to happen.

A male disabled participant remarked on ‘Issues around housing and stuff that are once again becoming a real wider threat to health’.

Disabled participants, however, felt that public health struggled with issues of holism and inclusivity. A female disabled participant remarked that ‘Somehow the systems kind of push the narrow view onto you’. Disabled participants felt that the current climate meant that public health was becoming more medicalised, individualistic and privatised. This was seen as unhelpful. Disabled participants across all panels believed that they had become public health ‘burdens’, viewed mainly in terms of a ‘cost’ to society or as ‘drains on the purse strings’ rather than as individuals with rights. This explains why many disabled people expressed cynicism about public health research and a reluctance to engage with it, including one female disabled participant.

We lost an estimated 25 billion in tax avoidance in major corporations and you never hear about that in the kind of mainstream media discourse; and the vilification of disabled people as scroungers and benefit frauds, although it plays very strongly into being able to dial back the social welfare budget, it is hugely damaging and hugely divisive, and until that changes, until that mainstream noise changes, and I’m not sure it will . . . I don’t foresee things getting very much better.

Holism was usually connected to equity. A female disabled participant said that ‘Public health means, to me, access to services and provision as a member of the public’. Most disabled participants felt that this was not always achieved, as the following quotation illustrates: ‘Public health provision that should be available equally to everyone, is not necessarily that way in practice’. All participants acknowledged that health inequalities continued to be strongly linked to how impairment/s became correlated with age, gender, ethnicity, socioeconomic class and geography. Current policy, however, was seen to be widening inequalities, which undermines the public health agenda. In one panel, for example, disabled people debated how people with learning disabilities had difficulty accessing dental health provision and how this could have broader consequences for their health. For many disabled participants, challenging inequalities politically was a greater priority than defining a public health research agenda.

I was the recipient of the Independent Living Fund and I do believe that one of the reasons I am still here in my grand old age is because I’ve always had a decent support package and that is what kept my health as good as it can be.

Several participants felt that current policy change should be the focus of public health research, rather than specific and refined interventions.

I’d be very interested to see any research done about the impact of all the cuts in services and benefits to people’s health, you know, because obviously there’s a massive change in social care provision and there’s a massive change in benefit provision and what actual impact that will have had, because it obviously will have had an impact on people’s physical health, and also on people’s mental health.

Disabled participants believed that professionals were working with outdated stereotypes of disability and, therefore, had limited understanding of their public health needs. Many, for example, felt that the link between health and disablist practice was poorly understood. They also felt that their impairment was used to frame their needs rather than being seen as a consequence of a particular health-care problem. They, in effect, become their disability. Disabled participants felt that people with cross-cutting, fluctuating, undiagnosed or severe forms of impairments, conditions or mental health needs, or with impairments traditionally associated with disability, were particularly sidelined and ignored. They expressed specific unease about how the diagnosis or identification of an impairment or condition with ‘disability’ became not only bureaucratically important but also increasingly linked to deservingness of treatment, public health access and rights to social welfare. This is why many disabled participants felt that their dignity was not always respected, and this further explained their suspicion of public health interventions and research.

Professionals agreed about the challenges of meeting public health needs within current resources, particularly given that these resources were seen as becoming increasingly scarce. Most professionals cited the important influence of the Marmot Review,20 which, as one participant observed, emphasised: ‘a life-course approach . . . on giving a child the best start, a universal offer but proportional to need. I think they call it proportional universalism’. Professionals identified with such sentiments but agreed that this is difficult to achieve in practice. They specifically mentioned how they struggled with ensuring a universal approach while also reducing health inequalities. Professionals identified the lack of evidence, particularly on how intersectionality mediated health outcomes and acknowledged that this created difficulties in providing appropriate support to people with disabilities. One professional, for example, noted that basic statistics on the mental health prevalence in BME communities were not available.

The role of public health interventions

The impact of austerity on welfare tended to dominate discussions in the deliberation panels with disabled people to such an extent that it was sometimes difficult to encourage them to focus specifically on public health. Many disabled people would argue, however, that understanding this broader context was fundamental to making sense of public health. This offered further evidence for their criticisms of public health interventions. A longstanding issue for many, which was articulated by one male disabled participant, was the perception that public health had ‘an emphasis more on curing us than sort of supporting us’. Several participants made allusions to the growing medicalisation of conditions at the preclusion of more inclusive public health approaches, including a female participant, who said that ‘Doctors don’t like us ’cos we’re expensive’, and a male participant.

You’ve got health authorities going bust, being shut down, and where they are losing money they’re then being fined to having their limited resources cut further. So as disabled people we are a smaller percentage of the population, and although people are acquiring age related impairments, they’ll deal with that as a sort of separate funding issue, but the likes of the rest, of the younger disabled people, they, you know, it’s not cost-effective necessarily for them.

A participant in Panel 4 believed that instead of social provision, the response to disabled people was often ‘Go and get a pill from the doctor’. A young BME woman with depression agreed: ‘I’ve just basically just got shoved in a corner; take them tablets and, you know, just keep on them and you’ll be fine.’

Another female participant in Panel 1 noted the following.

I think people, or social workers, they look at it as ‘go get your drugs and come back home and you can’t have a life, you know, like going to go swimming or an activity going to the cinema and funding keep getting cut off and you don’t get that support, and it’s really sad. It’s not about medication. It’s about having, you know, a better life. And like you spoke about obesity and stuff, it’s not about going to the doctors given a drug to lose that weight, that’s what the doctors are doing at the minute, just pump you drugs to lose weight; they could go swimming, go for walks or do something else, you know.

One male disabled participant said that the role of public health interventions was ‘Fixing people we can fix, and everybody else, sorry, we’ve got no money in the coffers’. The perceived instrumental focus and a concern with ensuring productivity/employment and potential economic gain were seen as especially unhelpful. This explains why some disabled participants identified with a human rights approach as a way of encouraging inclusivity and respect for the experiences of disabled people. A commitment to such an approach could also help to overcome many participants’ concerns about the perceived emphasis on individual responsibility and deservingness in current public health interventions, as a disabled participant discussed.

There is a bit of a growing culture, isn’t there, about, you know, apportioning blame to somebody if they get ill and if you get diabetes it’s because, you’ve not looked after yourself, and there’s the association then is obviously the cost.

A female participant explained that ‘you have a general right to services but no individual right to anything’. Pejorative judgements were seen as becoming more common, as the quotation below from a female disabled participant illustrates.

I think that underpins like health care for disabled people, even to the point of when, if you get weighed, if you get with hoisting and things, and you, you get judgements made about your weight because you’ll get told that you’re too heavy or, or you mustn’t be too heavy to be hoisted, or you mustn’t get too heavy to, you know, walk and, and things like that; and our non-disabled people’s choices are their own and we, they seek to make a lot more commentary on our choices than we do on theirs.

This connected to disabled people’s concerns about a lack of respect and loss of dignity mentioned above (see The meaning of public health), as one participant noted.

The woman who had taken her council to Court because they had removed her overnight care and said she should wear incontinence pads instead, and she was fully continent; and that’s an example of, we are not given choices, our choice involves somebody else.

The lack of respect was also associated with paternalism and a denial of choice for disabled people.

Deliberation panels involving disabled people questioned the use of the word ‘intervention’. One participant, for example, pointed out that interventions focus on disabled people rather than on health-care professionals. Such arguments confirmed suspicions that interventions aimed to fix or cure disabled people. Some disabled participants felt that a more inclusive approach could overcome this. Not everyone agreed, however, and several pointed out the ‘tokenism’ of public and patient involvement, which benefited researchers more than disabled people. This led some participants to suggest that research was reluctant to change its current practices. Participants, for example, considered it important to rethink the ethics of mainstreaming, especially within randomisation in RCTs. They advocated purposeful or quota sampling to ensure diversity. Many also gave examples of how their disability excluded them from research, including a female participant.

I had an unofficial experiment two years back, when I was at [name of university], you get regular e-mails around asking for people to take part in psychological research, ‘cos there’s always psychologists trying to do tests. And I’d always emailed back and say, ‘I have a mental health problem’. And most of the time people would e-mail back and say, ‘Oh no, sorry, you know, we’ll exclude you’.

Many disabled participants noted how the need for evidence was often linked to the use of measures. Most regarded these as insensitive, inappropriate and rarely relevant to the experiences of disability. Disabled participants identified research that could generate more relevant measures as a priority. This would help to overcome their concerns about being seen as a burden (see The meaning of public health), while encouraging researchers to focus on long-term health gains for disabled people. Another important consideration for disabled participants was the need for measures to reflect empowerment and independence.

So, you know, people like the New Economics Foundation with the happiness index, you know; and one of the things that might be useful to look at is the decisions that are made for people and the decisions that are made by people and what the difference is in their health, you know, so actually measuring, trying to, the more people are active in the decisions that they make in their lives, what impact does that have on their health as, as opposed to those who have decisions handed down to them, you know, and kind of what that means for us people, but also the individual cases on a wider case, you know, measuring the social impact of decisions right across society.

The residual impact of the medical model was criticised in many of the panels. Disabled participants voiced particular criticisms of the recovery model in mental health, noting that for many disabled people ‘recovery’ was not possible. Cost-effectiveness measures were similarly criticised for being informed by able-bodied norms, although disabled participants believed that researchers were not aware of this. This further undermined their confidence in public health research.

Many disabled participants stressed the importance of getting the ‘basics right’, that is, including disabled people in the design of the research from the outset to ensure ‘disability’ in design, as discussed by a disabled panel member.

I want, in research, an approach of impairments that says, yeah, you’ve got it, yeah, but this is what we could do as a society to empower and enable you, you know, to live a full life; because if you have a socially and economically active disabled person, however you define that, is volunteering, employment, peer support, whatever, you go from being a negative force to a positive force to be able to contribute, whereas a lot of the health research and interventions and stuff are seen in a negative sense.

Comments by the same participant demonstrate that the coproduction of research was a particularly popular idea.

We’re talking about coproduction . . . means involving disabled people right from the beginning . . . you’d avoid half of these pitfalls and problems if that was actually done, but as usual, it’s usually we’re an afterthought to be honest.

Several participants, however, pointed out that coproduction would need to take account of the diversity. A male participant noted the following.

We’re constantly renewing ourselves, there’s always people that become disabled people who weren’t previously; and it’s a complicated area ’cos it goes into personal transitions theory and things like that, but for a large part, a lot of disabled people don’t start off in a very empowered position.

This is why most participants remained critical of ‘a one size fits all’ approach, with several noting that mainstreaming does not ensure appropriate representation.

For professionals, two priorities emerged when discussing public health interventions. First, they focused on what a lack of representation meant for their evidence base.

I think there is a real mismatch between what, in public health, this evidence works for the general public; it doesn’t work for some sections of the disability. So actually by going on commissioning and evidence-based tools such as obesity elements, and some of the proven techniques there, definitely doesn’t work with people with a learning disability.

Public health professionals also noted that intersectional research was lacking, which again undermined the current evidence base.

I don’t think that we have enough like cross-cutting analysis on how different equalities interact with each other. So, I think we have analysis about disability and we have analysis about, for example, race or faith, but I think it would be more, it would be useful to have a more nuanced approach to understand particularly how the two things interrelate because then I think you probably understand how disadvantaged some communities are.

A human rights approach

As we have seen, disabled participants remained suspicious of current public health research (and interventions). They wanted a stronger commitment to health for all and noted how a focus on and understanding of the wider barriers to health and mental health was important in developing more inclusive practices, as noted by one participant.

If you haven’t got accessible housing or you don’t have the right support, you know, if you don’t have support to deal with mental health issues; that, all of those barriers that are out there are going to massively impact on a disabled person’s health anyway.

Disabled participants made a particularly strong connection between human rights and empowerment and how this connection impacted on ideas of citizenship, social inclusion and a more general understanding of who had ‘rights’ in UK society. In effect, a commitment to human rights was seen as fundamental to all forms of human activity, including public health research. This – as we shall see – contrasted subtly with professionals’ views, which saw human rights as a possible means to an end to improve research evidence.

Disabled participants, however, expressed concerns about how ‘rights’ could be manipulated. This is why they felt that any approach had to be informed by an overarching (theoretical) paradigm, which connected to more critical models of disability. One participant noted that the slogan of the social model was especially relevant (‘rights not charity’), before observing that it was legal ‘rights’ that ‘protected’ disabled people. This explains disabled people’s enthusiasm for the CRPD, which they felt could be the basis of more inclusive research practices.

The CRPD, you know, Declaration of Rights for Persons with Disabilities . . . it uses the social model as a tool. See, the thing about the social model, all it is, is a tool for analysis. It’s a tool for understanding . . . It’s used within the rights model. They’re not mutually exclusive.

Many disabled people felt that the social model paradigm was increasingly important, because it challenged the current cultural climate around disability and, in particular, the idea that disabled people are ‘burdens’. Participants in Panel 4, however, took a more nuanced view, believing a human rights model to offer more opportunities than a social model, as explained by one participant.

I think if we can use a human rights framework to our advantage to say, actually you have to listen to us, you have to consult with us, you have to consider us in the policies, because we are real and we are valid and we have human rights, we are equal humans. In that way I think rights is the strongest current political discourse we have for positive change for all minority groups, not just disabled people; and for that reason I think a rights-based discourse in relation to public health is strong, we just have to bear in mind the caveat that the rights, I suppose, can be misused as well.

For many disabled participants, a particular advantage of a more human rights-based approach was its potential use as a legal tool.

So I’d say, are the services implementing things like dignity inclusion and stuff, and also, and the other problem is when funding gets tight they switch straight back to medical model, and that’s a big problem. They try social model, whatever, in the good times, but as soon as the money, everything, their mind set, their systems, switch straight back to medical model which, for a lot of people with disabilities, does not offer dignity, independence, freedom of choice, it’s just back to you need to be looked after.

Despite this, many disabled people were not convinced that their rights would be respected or enforced, as one participant explained.

I know I’ve got human rights on paper, right [other members of the panel laugh] but it’s very difficult to actualise those rights, if that makes any sense? You know, under the Human, the UN Convention, I’ve got the rights to live independently; well the government’s just closed the ILF fund, so, you know; it’s about accountability as well, you know.

A participant in the same group then noted how one of the strengths of the Equality Duty [as outlined in the Equality Act (2010)28] was that responsibility lay with public bodies or society and not with the individual. Others agreed, but expressed concern that human rights did not have this same reach in the UK. Although participants were broadly supportive of a human rights model, they expressed concerns about how seriously it would be taken by researchers and policymakers. Many felt that it would become another ‘tick box’ with no redress if it was not followed. Nonetheless, most disabled participants, however, did find the decision aid attractive.

Professionals noted that, to work, any human rights decision aid would have to be championed at the highest national levels. Professionals questioned the usefulness of the decision aid and wondered whether it would become ‘just another evaluation tool’, which no one took seriously. They did not understand how a decision aid could link to SDHs or other indicators. Some professionals noted that they were already providing public health interventions to disabled people and that they consulted the evidence base provided by the Public Health Observatories. Professionals also questioned if using a human rights framework would necessarily lead to better evidence in RCTs. To this extent, professionals’ commitment to a more human rights approach could be seen as instrumental. There was little discussion among professionals about the more critical models of disability and their relevance to research. One professional saw them as a possible distraction. It was also rare for professionals to see research as a form of empowerment or as the basis for emancipatory activity.

The value of a human rights checklist

Using the CRPD innovatively and connecting it to RE-AIM (see Chapter 3) as a decision aid/checklist illustrates how models and theories of disability can inform research about the effectiveness of public health interventions. Each of the five deliberation panels gave examples of how intervention research can be sensitised to accommodate different configurations of diversity within disability. They also gave examples of how terminology and measures needed to change, alongside the conduct of research, to ensure that the complexity and diversity of the disabling experience was captured. In many ways, the deliberation panels were reiterating many of the findings of this review and, in particular, the need for better research evidence. However, politically and socially active disabled people argued that this was not an immediate priority for them, as basic access to health care and public health had to be ensured first. They also expressed a suspicion of public health research, which was seen as aligned to a more medical model of disability and, in particular, the idea of rehabilitation. Most of their deliberation was subsumed into theoretical and political debates about tensions between equity and distribution of resources.

Nonetheless, both professionals and participants espoused a holistic vision of public health,589 but neither group felt that this was being adhered to in policy or practice. Professionals, for example, noted tensions between ensuring public health prevention and promotion and taking a life-course approach. Participants in particular felt that there has been a ‘narrowing’ of the meaning of public health and that this has had consequences for how equity and social justice are understood. Furthermore, disabled participants felt that those responsible for public health research may not (yet) have the capabilities or resources to translate social involvement into the necessary political changes (see Beckfield et al. 590) and expressed concerns about how disablism and racism may thwart these efforts. Disabled participants, when speaking about public health research, examined the more general distribution of resources and made implicit links to a second-class citizenship, noting not only the complex relation between deprivation, discrimination and disability but also that any enabling discourses, practices and even research evidence become marginalised by the status quo. They were especially critical of commissioning and of the ability to translate research evidence into policy and practice. Concerns were also expressed about inclusion, which was often seen as instrumental, predetermined by the researchers and tokenistic. Disabled participants would have preferred to see a more political engagement and one that was evident throughout the entire research process.

Professionals struggled to connect the more theoretical debates about disability with the process of doing research, which was largely seen as a technical exercise. This was probably reflected in their concerns about the cost of inclusion rather than its political desirability. Professionals also struggled with issues of intersectionality when discussing disability, which contrasted with how they viewed ethnicity and gender (see Kapilashrami et al. 591). In this respect, professionals did not always see the links between theoretical and empirical innovation and the potential importance of opening up public health research to more critical insights that reflect disabled people’s experiences. Professionals tended to describe a top-down bureaucratic approach to inclusion, often following national leads or prioritising the appointment of designated champions. Professionals did not show a great deal of familiarity about the social and political meaning of disability. Both professionals and disabled participants indicated a sense of powerlessness in changing current public health priorities, which they felt had become defined by economic cost instead of long-term investments in health. For this reason, they questioned the value of the decision aid, although disabled participants expressed some degree of attachment to it and could see its potential value. Professionals expressed particular concerns that it would become another evaluative exercise, to which no one would pay attention.

Conclusion

Our deliberation panels suggested that the use of any decision aid needs to be linked to a human rights-based approach. In this way, the decision aid will be inclusive. Discussions also suggested that the decision aid could be used to build capacity by ensuring greater participation. Disabled participants were especially keen to become coproducers rather than to engage with tokenistic consultation, disconnected from the political and social experiences of disability. Professionals, however, might take more convincing.

How can different models and theories of disability appropriately inform research on the effectiveness of public health interventions, and to what extent can intervention research be sensitised to accommodate different configurations of diversity within and among general and disabled populations?

The scoping of the various models and theories of disability pointed to a rich, but largely untapped, resource for public health research. We singled out four key contributions that this literature could make to facilitating more inclusive research practices:

• ensuring that models and theories in public health are informed by a constructive dialogue with the political and social expectations of disabled people

• enabling the identification of locations at which theories and models of disability intersect with those of public health

• introducing the potential of a human rights model to strengthen the capacity of public health research to generate robust evidence relevant to the experiences of those with disabilities

• the creation of disability-sensitive decision aids to aid inclusion in public health interventions.

Our first scoping review identified a range of critical models and theories, in line with the social and political expectations of disabled people. These were developed largely in opposition to a medical model of disability and its view that impairment was a problem located in the individual, which rehabilitation could ‘fix’. Although medicine and rehabilitation are important, these theories and models of disability are committed to generating a more holistic understanding that advocates inclusive practices aimed at tackling discrimination and disadvantage. This led us to explore the potential of more human rights-based approaches, which are concerned with highlighting social exclusion and dismantling barriers to ensure access for disabled people to all aspects of social life.

Human rights-based approaches, along with the more social and critical accounts of disability, align with ecological models of public health, the most widely known of which is Dahlgren and Whitehead’s126 SDH framework. This provides a possible connection between theories of disability and public health paradigms, which we explored through the use of visual representations in Chapter 4. Commonalities include conceptualising the determinants of health as operating on individual, relational, social and structural levels, and a commitment to addressing social and health inequalities.

The use of the CRPD22 can deliver a capacity-building tool by functioning as a link between public health and socially informed understandings of disability. In particular, it provides a framework for dealing with the complex ethical and empirical issues that arise when evaluating public health interventions. The CRPD establishes the importance of inclusion, in addition to the importance of respecting dignity, when engaging with disabled people. There are, for example, important legal considerations which should not be overlooked in study designs, such as the role of the Mental Capacity Act (2005)30 in gaining consent and the importance of supported decision-making in accommodating people with intellectual disabilities. Our review, however, suggests that there has been little debate in public health about what ethical inclusion in research looks like or how it should be respectful of dignity.

Building on these insights, we illustrated one way in which human rights-based models could inform a decision aid that could be used to critically engage with current research evidence, while also supporting public health research to adapt more inclusive practices that are sensitive to the experiences of disability. Our deliberation panels further refined the decision aid by pointing out several tensions, including the risk of it become another tokenistic evaluation tool, which no one takes seriously. They did agree, however, that such an approach had potential, particularly in its commitment to social inclusion.

In presenting our decision aid (summarised in Figure 9), we emphasise that it should be regarded as ‘work in progress’, but it is nonetheless helpful in stimulating debate among commissioners and researchers. The decision aid, for example, could provide a resource, encouraging researchers to think about ways of respecting choice and ensuring the dignity of participants with impairments. It can also be used to evaluate current research evidence. Our review, however, indicated the danger of using rights-based approaches without thinking about how they link to empirical robustness and the needs of research. 588,592,593 This is why we connected our decision aid to the use of RE-AIM (see Developing practical guidance for inclusive research practices). A member of our steering committee, Professor Simon Dyson, suggested that we call it the Inclusion, Dignity, Equality, Accessibility and Intersectionality (IDEAS) decision aid.

FIGURE 9.

The IDEAS decision aid.

How do different models of disability map on to current research on public health interventions?

Our scoping review of public health interventions indicated that theories and models of disability rarely informed evaluative intervention designs, although it could be said such designs were also not particularly sensitive to ecological models of public health. The scoping of interventions in Chapter 5 illustrated that, although the internal validity of research design was frequently mentioned in systematic reviews, theoretical external validity was often ignored. We could not identify a great detail of discussion about inequalities or future public health priorities, such as childhood disability,287,594 ageing10 or multiple impairments and comorbidity. 583

The focus on internal validity, such as in ensuring control groups, randomisation, checking bias and the description of effects of interventions, seemed to encourage methodological disconnects about diagnosis definitions and outcome measures, in addition to dignity and equity. For example, the Cochrane Collaboration Risk of Bias Tool and the EPHPP quality assessment tool examine psychometric properties of outcome measures, and the EPHPP also offers an evaluation of ‘validity’ and ‘reliability’. 595 Neither tool, however, explains or justifies its relevance to the diverse range of disabling experiences or the extent to which it might reflect able-bodied norms. 595 Consequently, the validity of measures is not questioned and is taken for granted, despite more critical theories of disability questioning the sociocultural assumptions implicit in many measures. 596 Ironically, where disability was recognised, it was often used as a criterion of exclusion on the basis that it might undermine the validity of the study.

The theoretical disconnects that we identified between public health paradigms espoused in research and the actual research undertaken requires more critical discussion. 597 This is perhaps why our scoping of public health research suggests that the empirical design of interventions did not always match up with the long-term creation of equity and, in particular, the contribution that public health research makes to policies that contribute to reducing social inequalities. This is despite research indicating that for interventions to support ‘self-efficacy’, they need to be designed in a way that is supportive of an ‘ongoing’ and ‘interactive, multilevel process of mutual inquiry’, sensitive to individual, relational, social and structural levels. 87 Such an approach is in keeping with models and theories of disability as well as with public health models as revealed by our visual mapping. It also links to future directions of public health research. 598

To facilitate this, interventions, and the research that evaluates them, might need to reflect a greater diversity of approaches. Most of the studies that we accessed in the 30 generic and 30 specific public health interventions used behavioural change models that implicitly place the onus of responsibility for change on the individual, rather than on how context and environment may constrain opportunities and outcome. This creates potential tensions with more inclusive, rights-based approaches that may view the onus for change to lie with changing policy or societal norms to ensure that they become more accommodating of disability. 132,599 More critical disability paradigms destabilise the norms of rational choice theory and emphasise the social causes of health inequalities rather than ‘checking’ the health effects of interventions. 597 This is consistent with public health paradigms that advocate complexity and innovation. However, our review suggests that public health research (and the interventions being evaluated) does not always focus on comorbidities or ‘multi-level, multiply determined, complex and interacting’ factors that could affect the outcomes of the interventions. 435 Furthermore, discussions about whether or not the interventions were explanatory or pragmatic in nature were rare. 436 To overcome these problems, some authors advocate using realist approaches when evaluating public health interventions. 600,601 This would connect well with the theoretical and methodological basis of disability models and with holistic and ecological understandings of public health. 602

What are the implications for commissioning research into public health interventions inclusive of or for disabled people in a way that accommodates appropriate terminology and measurement and that takes account of different causes and types of impairment, while being sensitive to the experiences and needs of different demographic groups associated with gender, socioeconomic position, ethnicity, sexuality and age?

Our proposed decision aid enables commissioners to assess the potential of research to reflect the diverse range of disabling experiences, including the role of intersectionality. Commissioners also need to ensure that research is methodologically robust and able to produce findings that can contribute to the existing evidence base. More inclusive research could address these concerns, particularly given that the current evidence base has little to say about the experiences of disabled people. Furthermore, our decision aid could help commissioners to negotiate the political nature of research and to address the concerns of those who advocate a human rights-based approach, which moves beyond the ‘politics of recognition’, where ‘focusing’ on need can be confused with ‘responding’ to need, to establishing a ‘politics of difference’, where acceptance of difference is reconciled with an intent to ensure that such difference does not become a basis for inequalities. 603,604 Our deliberation panels suggest that health-care professionals are well aware of the difficulties that research has in establishing equity, although more politically active disabled people identified the value of using a decision aid to educate and empower disabled people. Locating ethical choice within rights-based structures allows – at least theoretically – participants more control, while ensuring that their legal rights and entitlements are respected. These, however, remain contested debates, which need to be negotiated when undertaking research.

Most of the public health interventions reviewed, even those inclusive of disability, theorised disability in terms of cost to the general public and conceptualised it, albeit subtly, in terms of individual dependency and deservingness. Consequently, interventions were found to be occurring downstream or retrospectively after a health inequality and cost had already been identified (e.g. obesity or dementia) rather than to be concerned with preventing the inequality occurring in the first place (Figure 10).

FIGURE 10.

Retrospective prevention.

This might be appropriate, but we raise it to be mindful of the importance of understanding the norms and values implicit in various paradigms and models, along with the importance of considering the influence of the socioeconomic and political context in which interventions are developed. As we have noted, critical models of disability dispute the emphasis on individual choice and behavioural change. In these models, political, social and economic contexts create disability. Cognitive behavioural therapy, for example, while enabling the individual to cope better with their conditions, can simultaneously encourage them to cope with and adapt to what could be perceived as a repressive social environment. 17 This further justifies a more inclusive rights-based approach, in which the social construction of disability is acknowledged. Critics, therefore, argue for a shift in focus by pointing out how individuals, especially if they are living in poverty, cannot change the disabling environments that cause health inequalities. 178,605 This has led to calls for more prospective interventions, as detailed in Figure 11. 433,602

FIGURE 11.

Prospective promotion.

How should participants, the public and stakeholders be involved in research and what does inclusive research practice look like?

Our decision aid offers various strategies on which more inclusive research practice could be based (although this would also need to connect to more inclusive interventions). If the design of an intervention excludes disabled people, any research evaluating that intervention will replicate this exclusion. Our review discussed how more inclusive practices could be enacted at any stage of the research process, including establishing the types of research questions relevant to the experiences of disabled people; having designs that are inclusive and accessible, able to capture diversity and intersectionality, including the use of sensitive and appropriate measures; and encouraging participatory dissemination and implementation of research findings. We noted, however, the different interests of stakeholders. Our deliberation panels of disabled participants, for example, expressed particular enthusiasm for coproduction. Researchers, however, seem more concerned with using inclusive research to establish methodological robustness, perhaps creating new forms of measurement that capture the experiences of disability or at least ensure that the use of measures does not provide a basis for excluding particular groups of disabled people. This, however, does enable ethical involvement to connect to empirical robustness. Linking our decision aid/checklist to RE-AIM, for example, could help to facilitate this by linking theories of disability to the implementation and outcome of methodologically robust public health research. The links between the human rights-based approaches and robustness of research evidence are especially important, and more inclusive practices need to reconcile their mutual interdependence.

Our scoping review suggests that the inclusion of ‘disabilities’ in public health often follows a top-down approach, with limited or tokenistic public involvement. We also note the particular difficulties faced by public health research in engaging with people with perceived communication difficulties or cognitive problems. Campaigns focused on ensuring involvement in trials (such as It’s Okay to Ask592,606) and the use of disability champions, including partnerships between government and third-sector partners, offer potential solutions to these problems, as do discussions about establishing an ethical framework and available cohort for recruiting people with dementia to trials involving older people. 607 These initiatives, however, are not without their critics, as discussions in our deliberation panels demonstrated. More critical approaches to disability advocate a more bottom-up approach. Involving people, especially if they have typically been under-represented in research, can have a powerful effect on the people themselves, while generating a more inclusive research process. 103

Stakeholder involvement and empowerment are perhaps poorly reflected in intervention studies of effectiveness in public health research, as inclusion is viewed as secondary to the aims of the research. 608 This is perhaps why the role of PPI generated so much discussion in our deliberation panels. Furthermore, we found that interventions were rarely informed by empirical insights generated from the lived experiences of disability. 103 The emancipatory potential of research design was also rarely realised in public health research. Moreover, we did not find evidence of a commitment to accountability among intervention studies. The setting of interventions might exacerbate the problem. Schools or workplace environments may not be typical places in which to find people who experience social isolation, thereby undermining a fundamental aspect of inclusion. For example, people with long-term mental health issues and learning difficulties are particularly at risk of social isolation, as are those in marginalised groups who also have disabilities such as BME women, migrants and family carers. 13,609 These groups might not be particularly visible in the settings from which many samples are drawn.

One possible way of ensuring equity and inclusion is through using the principles of universal design. 610 This involves more than just mainstreaming disability or ensuring nominal compliance with equity (although these issues are undeniably important) but requires careful thought about inclusion and its consequences for research practices. To this extent, universal design is about enabling a sustainable commitment to equity,611 in terms of either facilitating greater inclusivity or reducing inequalities. This might prove difficult, at least in the first instance, as our scoping of public health reviews indicates how empirical practices are not always linked to theory. This creates difficulties when offering meaningful explanations about the implications of disabling experiences for public health’s evidence base. It also creates difficulties when engaging with the implications of inequalities and disadvantage.

The scoping review suggested tensions between improving the general health of a population (universal/utilitarian) and a more focused approach that examines particular inequalities or issues such as dementia which affect a particular subgroup within the general population (targeted/distributional). More universal approaches rarely mainstream disability or connect disability to its more social and political consequences, including the potential for more emancipatory, inclusive practices. This demonstrates how debates about equity and inequality can become sidelined.

If research is to have an impact on a general population, disability needs to be mainstreamed into public health interventions. There is also a need for research that focuses on disability, in addition to research that targets specific inequalities affecting disabled people. Some authors have suggested that a mainstreaming approach to disability should be seen as a category of intersectionality, in that disability would feature alongside age or gender, for example. 487 This is how interventions can be both universal and distributional in nature. For example, an intervention on urban renewal ensuring accessibility for older and disabled people by installing outdoor elevators and escalators also increased walkability, social interactions, safety and socioeconomic regeneration. 608 Such interventions are multilayered and comprehensive in the ways in which they tackle health inequalities. Furthermore, the addition of an observational qualitative arm or process evaluation can help to evaluate the success or failure of an intervention in a way that reflects the complexity and diversity of the disabling experience, as well as provide an insight into participatory approaches.

What study designs and relevant outcomes best capture experiences of impairment and disability in a way that 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. 612 Quality 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. 613,614 As 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. 172,439 Our 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 thinking79,155,615 or take it in new directions. 413,566

Public health interventions are increasingly moving into welfare, vulnerability and risk. 616 This 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. 64,617 This is known as the ‘disability paradox’ and raises important questions for public health research. 618 Interventions 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). 152,153,620,621 The 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. 622,623 Social 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.

Reflections on the research

This was a challenging and ambitious review, which attempted to synthesise complex, and at times seemingly incompatible, debates within the defined time frame of an 18-month project. This involved making a range of pragmatic and theoretical decisions, which are outlined in Chapter 2. There are, however, more general considerations that should be taken into account when interpreting our findings.

The research was conducted in response to a commissioned call by the NIHR PHR programme, ‘What are the implications of different models and theories of disability for researching the effectiveness of public health interventions and what factors should be considered for research studies?’. The commissioned brief was broad in scope and required a synthesis of the literature on models of disability as well as advice on terminology, inclusive research practices and the use of appropriate study designs. The brief was particularly interested in life-course approaches and the impact of a broad range of disabilities.

The volume of literature on models of disability was vast and disparate, reflecting a diverse range of priorities, paradigms and languages, and combining specialised methodological and empirical concerns with more nuanced and wide-ranging theoretical debates (see Chapter 3). We had to juxtapose carefully the need for specific detail and recourse to specialist terms and debates with the ability to offer a generic and accessible account of interest to public health research and commissioners. We are aware that commissioners may well have little previous knowledge of the debates associated with different theories and models of disability.

Our review struggled with a general lack of evidence on what a public health of disability should look like. Our analysis, therefore, highlighted the importance of generating a debate among those commissioning and doing public health to question their current and future practices. Our IDEAS decision aid, along with the guidelines, have been produced in response to this challenge and are designed to generate informed decision-making among stakeholders. Without such a starting point, any debate about research design (including outcome measures) that is disconnected from experiences of disability would have been likely to reproduce current difficulties rather than to transcend them. This, for example, explains our emphasis on the importance of understanding the ways in which theories of disability have – and could be – used to make public health interventions (and established research designs) more inclusive and responsive to the needs of disabled people. The failure of public health research to engage with a range of disabling experiences has reinforced this in other ways too (see Chapters 4 and 5). We had, for example, little evidence on which to offer advice for assessing effectiveness and developing appropriate outcome measures for disabled people. This is also why we offered a critical commentary on common outcome measures rather than a redesign of them to establish their validity for capturing the diverse range of disabling experiences.

The commitment to capturing broad themes meant that we had to make compromises over the level of detail that we could provide. Our findings, although relevant to childhood disability, reflect the preference of previous debates to focus on disability in adulthood. We have attempted to counter this ‘bias’, but acknowledge that this is an important area for future investigation. Similarly, emerging, and at times contested, debates on neurodisability (which has important implications for childhood disability) and longstanding debates on sensory impairments suggest the importance of individualised and specialised responses. The need for research exploring what more inclusive practices mean for specific groups of disabled people is an important consideration. This, however, raises an interesting additional tension between universal and more specialist designs, which is also a feature of the literature. The resulting practical and methodological issues are rarely debated. As we have seen, for example, the assumed need for more specialist designs is used uncritically as a reason to exclude those with a disability. A more considered and informed approach, which reconciles practical endeavour with theoretical insight throughout the entire research process, is necessary.

In presenting our models of disability, certain strategic decisions needed to be made to facilitate a coherent narrative. We decided to offer a thematic rather than a strictly chronological account. This was particularly important to ensure that we could capture the ways in which the models and theories informed each other while also changing over time. We did not want to present a schematic or static account. Our advice needed to acknowledge the ongoing influence of the different models on current practice and the process of their continued (and future) evolution, in dialogue with each other.

Our decision to use The Cochrane Library had an impact on the way in which we framed public health. Our use of supplementary databases, associated with the Campbell Collaboration Library and the Joanne Briggs Institute, did not entirely mitigate this. By their nature, Cochrane-style reviews lean towards clinical topics and RCTs and can sometimes seem disconnected from the political, economic and social position of disabled people. Trials, while attracting particular interest among those undertaking public health research, rarely reflect the emerging tensions between ecological approaches and well-established medical models. This explains, for example, why no review linked its findings to theoretical or empirical discussions (or evidence) about SDHs or inequalities. Their purpose was to assess ‘effectiveness’, while following a formula that did not encourage discussion of wider social issues. Furthermore, some of the discussions around the inclusivity of the reviews and their methodology (such as risk of bias assessments and focus on internal validity) may not be fully transferable to other types of reviews (such as mixed methods) or primary studies (such as mixed methods evaluations, qualitative studies and process evaluations). It is, therefore, important to acknowledge that the scope of public health research is much broader than reviews of intervention studies.

Finally, it is important to acknowledge the ‘realities’ of current research priorities (and funding). As our deliberation panels demonstrated, disabled participants expressed serious concerns about the extent to which research was committed to listening to their experiences and to generating evidence that is meaningful to their lives. We accept that the practicalities, and perhaps understandable pragmatism, of public health research can create tensions when attempting to adapt more inclusive research that is able to accommodate diversity. Implementing our decision aid would, for example, enable current key stakeholders to question their current practices, particularly if they wish to avoid accusations of tokenism. This includes a commitment to investing in capacity building to ensure that public health can better engage with disability; allocating additional resources to those researchers who wish to adapt more inclusive designs; challenging those researchers who use disability as an exclusion criterion; and ensuring ethical approvals do not always assume that disabled people are ‘vulnerable’. Admittedly, these changes will create additional financial pressures in an already challenging funding environment, although the long-term gain in facilitating a better informed evidence base undermines the potential for flawed understanding, inappropriate responses and wasted resources. Our advice to researchers and commissioners presented here is a response to these concerns.

Future research

Reflections on the scope of the project have provided some useful insights into possible foci of future research. Evidence on how best to reconcile inclusive research practices with methodologically robust research designs offers an important starting point. Without this, we will continue to know little about what will work, for whom and under what circumstances. We have mentioned the value of exploring the impact of more inclusive practices for a range of different disabilities, which might create specific challenges that need to be accommodated by future research. Life-course is an important consideration, as is the need for research to reflect the specific experiences of disabled children and young people. Underpinning this work is the need for valid and reliable outcome measures that are sensitive to the disabling experience. With one or two expectations,440 we would appear to be a long way from adapting current measures to make them more applicable to populations with a disability; and even development of validated and reliable measures might struggle to convince those who assume a more critical approach to disability. They would prefer a focus on neurodiversity. The tensions raised by the use of measurements, particularly in terms of possible accusations of ableism, reflect the challenges facing public health research. Developments in the application of capability approaches and their potential connection to human rights and social justice offers a possible way forward, although, at present, this remains a theoretical rather than empirical possibility. Furthermore, and in relation to this, a more inclusive research design has to somehow ensure that its findings capture the experiences of disabled people. Current research, for example, struggles to offer a convincing framework, even when disabled people are included within the sampling strategy. This suggests the need for evidence on the use of analytical techniques that would enable researchers to make sense of their findings in ways that are relevant to the experiences of those with disabilities. Finally, there needs to a more robust evidence base on how best to facilitate more meaningful public engagement in public health research. This includes exploring successful strategies of engagement, alongside a discussion about the consequences (and politics) of involvement (Box 4).

Developing practical guidance for inclusive research practices

The findings of this report have illustrated the need for more guidance on how to integrate a disability-inclusive approach into robust evaluations of public health interventions. Socially and politically active disabled people as well as professionals agree that having a disability-sensitive paradigm within which research could be designed and implemented would represents a positive step forward. Current evaluation designs, however, do not link into contemporary disability and public health perspectives or develop outcome measures evaluating how people can live well or flourish with disability. Our project has also illustrated how models and theories of disability remain untapped resources for establishing a more sensitive reinvention of public health research practices. Our report gives the specific example of how disability equity could be achieved using a human rights paradigm.

In line with best practice in research, politically and socially active disabled participants and organisations run by disabled people were actively involved as stakeholders in our study. They were an essential resource for the project. Although the project did not follow a coproduction model, we included principles drawn from it, with findings informed through a partnership between the project team and the wider community of politically and socially active disabled people. Their comments and ideas indicated the need for meaningful user involvement in setting public health research priorities and anchoring them in an appreciation of their health needs and the inequalities experienced by disabled people.

In order to support our primary stakeholders, as well as to inform the commissioning of public health research, we have developed tentative guidance and a checklist for the development and evaluation of further inclusive research practices. This guidance may also help to guide intervention design and improve current evidence-based policy. To make it especially accessible to those doing public health research, we have adapted the successful MRC guidance on developing and evaluating complex interventions624 and, ensuring consistency with our approach, have linked it to the internationally recognised human rights convention (CRPD) to help ensure an ethical basis for research (Figure 12). Our use of the MRC guidelines is deliberate, as it provides a potential link between robust design (as reflected in RE-AIM) and more inclusive approaches, which are sensitive to the diverse experiences of disability. As we have mentioned, our intent is to begin a debate about what more inclusive research practices might look like, to enable commissioners and researchers to understand the consequences of the decisions that they make with regard to disability.

FIGURE 12.

Key elements for public health research incorporating disability into the development and evaluation process. Adapted, with the permission of the MRC, from Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008;337:a1655. 624

Advice to primary stakeholders: public health and disability checklist

In line with our commitment to a human rights approach, we end our report by using the IDEAS framework outlined in Chapter 7 to offer possible advice to a range of different stakeholders, in the form of a pragmatic public health and disability checklist. We begin by offering a checklist to people with disabilities to encourage them to engage with public health research. This could be adapted to a variety of accessible formats (Figure 13), although our suggested text should be regarded as preliminary and would need to be redrafted following wider consultation with disabled people and their organisations. (This was outside the scope of the current research project.)

FIGURE 13.

Checklist for people with disabilities when engaging with research.

We also present a public health and disability checklist, which researchers might wish to consider when thinking about undertaking public health research in ways that are sensitive to disability (Box 5). This is a little harder to do, as current research practice reflects different degrees of sensitivity. Exclusive practices, for example, occur alongside examples of (inclusive) good practice that are informed by social and political engagement with disability. Consequently, and consistent with our approach, our questions are intended to generate enabling, reflexive engagement rather than to be prescriptive. As we have noted, more inclusive research designs improve the evidence base in public health, enabling a better and more universal understanding of effectiveness and one that is relevant to the experiences of disabled people.

Building on this, we now reflect on the potential considerations that commissioners might like to take into account when commissioning public health research (Box 6). These can be connected to the guidance for researchers.

Reflecting the potential and positive influence of ethic committees, when ensuring more inclusive research, we next consider the types of questions, such committees might consider asking (Box 7).

Conclusion

The research undertaken for this report has produced a review of disability models and theories, a benchmarking report on current practice in intervention research, and an evidence-based and critically informed guide/checklist for research commissioners and researchers that assesses and evaluates the consequences of adapting a more nuanced and socially inclusive approach to disability when undertaking intervention studies. Our report has discussed the extent to which public health research could be made more sensitive to the different models and theories of disability. Our findings outline a range of options available to researchers and commissioners. We pay particular attention to human rights approaches. These can connect more critical models of disability to the ecological models already used in public health research and policy. They, therefore, offer a potential framework by which commissioners and researchers can assess the consequences of choices and decision-making when attempting to develop more inclusive public health research.

Contributions of authors

Maria Berghs (Research Fellow and Co-investigator) was responsible for conducting the two stages of the scoping review and oversaw the deliberation panels. She did the primary writing up of the report with the support of Karl Atkin.

Karl Atkin (Principal Investigator) oversaw the day-to-day management of the project, acted as second reviewer and aided the writing up of the project, taking responsibility for the final edits. Alongside Professor Hilary Graham, he ensured theoretical and empirical oversight of the project.

Hilary Graham (Co-investigator) ensured the critical public health focus of the project. She gave her considerable theoretical expertise and technical advice at all stages of the project to ensure its empirical robustness.

Chris Hatton (Co-investigator) gave theoretical and empirical foundation to the project using his expertise in intellectual disability and public health. He reviewed the writing up of the project and gave advice in terms of applicability to a public health audience.

Carol Thomas (Co-investigator) ensured that the theoretical overview of the project linked to disability theory and models. She also gave insights into new directions and developments in disability studies.

Data sharing statement

This is a narrative scoping review and, therefore, the material generated beyond that contained within the report is not suitable for sharing. Further information can be obtained from the corresponding author.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the PHR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the PHR programme or the Department of Health.

A human rights toolkit for public health research

What is the study about?

Public health interventions that are effective in the general population are often assumed to apply to people with disabilities. However, evidence for this is limited and there is a need for more inclusive and better informed research. Given the public health challenges facing the UK population, it is especially important to ensure that interventions are relevant to people’s lives.

Randomised controlled trials are viewed as the gold standard of research in public health and are becoming increasingly influential in terms of policy. However, these are not always inclusive.

To address this problem, we want to develop a toolkit to help inform ‘disability’-sensitive and ethical research. We want your advice on how to develop this toolkit and, more specifically, on how researchers can do better research. No prior knowledge of research is needed to take part in the discussions.

Why human rights?

Human rights are becoming increasingly influential in informing how research should be conducted. Article 3 of the UN CRPD defines these rights as:

1. respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

2. non-discrimination;

3. full and effective participation and inclusion in society;

4. respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

5. equality of opportunity;

6. accessibility;

7. equality between men and women;

8. respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. 22

What does our toolkit look like?

Our proposed toolkit focuses on dignity, inclusion, intersectionality, accessibility and equity.

Why a panel?

We are still developing and trying to improve our toolkit. We want to know what you think about it. How well do you think it reflects the needs of people? Will it help researchers to be ethical and respectful and to protect human rights?