Aims of the study
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.110–112This can be a strength when
assessing the depth and breadth of a research field and particularly one characterised by diverse approaches.113–115However, it can also be a potential weakness, which underplays specificity and
encourages imprecision,112while 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’s110widely 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 Levacet al.’s115and Daudtet al.
’s117recommendations 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 practice112,114and more broadly in assessing theory and models.118They 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.112Moreover, 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
Aims of first scoping review
The stage 1 scoping review offers a critique of different (largely theoretical) understandings of disability and explores six inter-related themes by:
1. identifying and summarising the range of disability models, definitions and theories and assessing their potential contribution to public health research and policy
2. locating different definitions, models and theories within the field of disability studies and the social and political movements of disabled people
3. appraising how well different definitions capture the diverse range of experiences associated with disability, with a particular focus on how different causes, aetiologies and trajectories mediate this experience, including a consideration of the impact of comorbidities
4. assessing whether or not, and how, the different consequences of impairment and the context in which it is realised inform debates, including a focus on how well different theories of disability take account of broader sociodemographic variables and experience
5. investigating the consequences of adapting particular terminologies, study designs and outcome measures when evaluating public health interventions
6. examining different approaches to public/stakeholder involvement. METHODS
We began by developing a protocol, outlining all major methodological decisions taken. Identified references were entered into an EndNote (version 7.4, Thomson Reuters, CA, USA) library. This enabled studies to be retrieved by key word, subject heading or medical subject heading (MeSH) searches. We intended to identify relevant studies through:
l searches of major electronic databases
l cross-checking with major publications in the field of disability studies, history and policy
l scanning reference lists of relevant papers l internet searches
l searches of key books and book chapters (an important source of literature on this subject) l examining major policy documents
l consulting experts in the field by cross-checking key texts with members of the project
steering committee.
As can be seen inInitial inclusion criteria, we had to refine our initial approach to one that was more focused and consistent with the aims of the project. We next explain the development of our thinking and how we arrived at our eventual methodological approach.
Initial inclusion criteria
All resources were searched from 1990 onwards, as this is when critiques and new models begin to appear in the UK (as seen in the work of writers such as Nasa Begum and Gerry Zarb,66Colin Barnes and
colleagues,67Mike Oliver72and Jenny Morris119). These authors also capture the history of the various
disability and civil rights movements, thereby adding further context, enabling us to locate material within broader social movements.
We then set about identifying MeSH terms. In doing so, we included a range of different physical,
intellectual and mental impairments, while reflecting the different political, economic and cultural disabling consequences of having a lifelong, acquired or fluctuating condition. These were cross-referenced against those terms used in disability studies, sociological literature and public health policy. Our MeSH terms included:‘model*’,‘theor*’,‘disab*’,‘handicap*’,‘persons with disabl*’,‘mentally disabled*’, and ‘chronic disab*’. We used Boolean operators such as‘AND’to widen or narrow the searching in our databases. Our search strategy included the following electronic databases: Scopus, MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and Social Sciences Citation Index. We set an inclusion and exclusion date (1990 and 2014, respectively). We supplemented the electronic database searches with hand-searching of key journals, along with website and grey literature searches (such as the Conference Proceedings Citation Index).
Our inclusion criteria mean that an output was considered relevant only if it was in English; informed by one or more of the key guiding issues highlighted in the review questions; clearly focused on models and theories; and met our operationalisation of the study objectives/review questions. Studies were excluded if they were not in the English language. Studies published before 1990 or after May 2014 were excluded. If the studies did not incorporate our MeSH terms, they were also excluded.Box 1illustrates preliminary results when using the SCOPUS database.
BOX 1 Database overview
(1990 to May 2014) AND (‘disabilit*’AND‘theor*’)=4970.
(1990 to May 2014) AND (‘disabilit*’AND‘model*’)=26,415.
We had a large number of‘hits’, but closer scrutiny revealed that many of the included studies were not unequivocally discussing models or theory linked to‘disability’. We realised that the scoping in the databases was rather unwieldy, as the overview of theories and models of disability was too extensive. We checked if this would be the case in the PubMed database using the same MeSH terms.‘Hits’were still in the thousands. On further analysis, the way in which‘theory’could be defined was too diffuse for the purposes of our review. There were also different conceptual levels of theories, comparisons and meta-analysis, based in a plethora of paradigms evident across psychology, law, social sciences, medicine, statistics and public health. We discussed this as a team and with our project steering committee.
Following these discussions, the research team decided to refine and refocus our scoping approach to ensure that we adequately captured the theoretical richness and diversity of‘disability’in a way that was consistent with our aims.118,120Consequently, we oriented our search towards specific journals in which we
felt that this diversity would be reflected. This not only offered a more manageable approach, but also ensured the inclusion of different disability theories and models. Following discussions with the project steering committee, we made a list of the 10 most influential peer-reviewed journals considered likely to contain articles about theories or models of disability and, at the same time, to capture the experiences of various impairments, different social and political experiences of disability and perspectives that took account of intersectionality.
Using this more focused approach, we hand-searched 10 journals and followed up key papers, reports and texts. The 10 journals wereDisability & Society; Scandinavian Journal for Disability Research;Disability Studies Quarterly; Journal of Intellectual Disability Research; British Journal of Social Work; Human Rights Quarterly; Journal of Disability Policy Studies; Social Science & Medicine; Ethnicity & Health; andSocial Theory and Health. We did not include journals such as theDisability and Health JournalorDisability and Rehabilitation,as we wanted to avoid a focus on rehabilitation. We also wanted the selected journals to ensure representation across not only impairments, age, socioeconomic class, geography and ethnicity but also the political and social spectrum.
We searched the archives of each of these journals from January 1990 to May 2014. For each journal, we kept a record of the possible articles of interest. In keeping with both a conceptual and genealogical approach, we decided to make our MeSH terms more flexible and inclusive to accommodate the historically changing language and policy landscape. The abstract or title of a paper thus had to include at least one of the following search terms:‘model’,‘paradigm’,‘perspective’,‘approach’,‘formulation’,‘conceptual frame’, ‘discourse’,‘definition’,‘understanding’,‘theory’or‘framework’. We were especially aware that early articles may not use the word‘model’. There also had to be an explicitly named perspective of viewing disability in the title or abstract. If we were unsure, but the title included possible MeSH terms that could be linked to a specific way of viewing disability, we included it. For example, we included papers that were about‘human rights’,‘social understanding’,‘United Nations Convention on the Rights of Persons with Disabilities’,‘International Classification of Impairments, Disability and Handicap’(ICIDH),‘International Classification of Functioning, Disability and Health’(ICF),‘ecological’, and‘critical disability studies’(CDS). Finally, we tried to be inclusive of language that was applicable to specific disabilities or language that may now be considered politically incorrect, such as‘normalisation’or‘retardation’.
Ideally, we would have liked to have included a journal with an explicit focus on childhood disability. However, potential journals such asArchives of Disease in Childhoodhad a biomedical focus, whereas more specialist journals, with a large number of papers on childhood, such asAutism, were too broad in scope. The 10 journals selected, however, did include papers on childhood disability, although we acknowledge a potential gap in our approach, which we attempted to address when interrogating reviews of intervention studies.
Data selection
We located 182 articles from the 10 journals and printed these for further hand-searching. We mapped these papers according to the guidelines of Arksey and O’Malley110by providing a summary of each paper.110
Methodologically, Campbellet al.118noted that there are no real guidelines linked to theoretical reviews.
Particular challenges include charting the relationship of a model vis-à-vis a theory, theoretical explanation and/or development.121We also realised that, in order to understand the applications of some models, we
had to be methodologically inclusive of how they had been translated. As we have seen, scoping reviews are especially useful in allowing an appraisal through‘mapping’of the literature rather than giving an ‘assessment’of the‘quality’of the individual studies. They are also useful in highlighting gaps in current available reviews.112
Conceptually, we wanted to understand theory development and implications of use. This informed our approach to charting. A data extraction sheet was designed to quickly map details on the five inter-related themes (seeAppendix 2). This enabled us to identify and summarise a range of disability models, assess their potential contribution to public health research and policy, and appraise how well different
definitions capture the diverse range of experiences associated with disability. Following discussions with our project steering committee, we wanted to ensure balance in how we represented theories and models, by illustrating both their strengths and their weaknesses.
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.
Reflections on the literature
When looking across the set of papers, we noted four distinct models: medical models; human rights models; social models; and CDS models. Although the core elements of the models demonstrated a degree of consistency over time, perhaps not surprisingly, the definitions, terminology and theoretical background of the models kept changing and were dynamic, gradually becoming more reified–and perhaps less innovative–over time. Our analysis reflects this.
More theoretically informed articles were found in two journals, namelyDisability & Societyand Scandinavian Journal of Disability Research.Furthermore, although we assumed that journals such as Human Rights Quarterlywould include discussion about disability rights, our review suggested otherwise. Ethnicity & Healthhad no discussions of models andSocial Theory & Health, for example, contained only one article that was relevant (Table 1). The journalDisability & Societywas largely UK focused, although it published foundational work on the social model and functioned as a genealogical review through which to find books, articles and grey literature. The Scandinavian Journal for Disability Researchfocused on Scandinavian or European thought on disability with well-established international academics and was especially strong on linking more relational and psychological accounts of disability.
The most geographically diverse journal was theJournal of Intellectual Disability Research. By way of contrast, theJournal of Disability Policy Studies was completely US based.Social Science & Medicinewas heavily biased towards the international application of more medical models of disability andDisability Studies Quarterlywas the most innovative by linking disability with cultural studies. We would have expected there to be a lively debate on models of disability in theBritish Journal of Social WorkorSocial Theory and Health; however, this rarely occurred. Furthermore, despite an interest in disability and human rights, especially in an international context,‘disability’tended to be undertheorised inHuman Rights Quarterly. Although research on disability had been published inEthnicity & Health, no conceptual discussions were found.
Geographically, most discussion of theoretical models were located in the Global North (the UK, the USA and Europe) rather than the Global South, where, it is argued, more disabled people are located.12,122
Across our review period, we found only one article discussing a rights-based model from the Global South (Table 2). 10 journals n = 187 Inclusion criteria • January 1990 to May 2014 • English language
• Used words like: ‘model’, ‘paradigm’, ‘perspective’, ‘approach’, ‘formulation’, ‘conceptual frame’, ‘discourse’, ‘definition’, ‘understanding’, ‘theory’ or ‘framework’ in title or abstract (early articles may not use the word ‘model’)
• Explicitly named perspective of viewing disability in title or abstract but unsure of explicit discussion, human rights, social understanding, UNCRPD, ICIDH, ICF, ecological, normalisation, CDS, etc. (unsure = included)
Second reviewer • Checked charting • Controlled for bias
• Checked cases for which the first reviewer was unsure of inclusion criteria (27 articles)
• Discussed with the first reviewer and hand-checked 27 articles
Inclusion criteria
• Hand-checked the articles, charted the models according to scoping studies grid and checked for visual models
• Explicit discussion of theoretical model(s) of disability in the text (one, comparison or meta-analysis)
n = 121
n = 104
Exclusion criteria
• Rejected professional models unless implications for identity of disability or policy-level discussion • Rejected cultural understandings of disability and differing in-depth theoretical discussions unless explicitly in conversation with other models • Rejected overtly statistical, psychological and epidemiological models
FIGURE 1 Scoping flow chart. METHODS