Introduction
From the dissemination of studies on disability in the 1960s, the movement to demand rights and the struggle of people with disabilities (PwD) to be recognized as protagonists in their lives has grown (De Loureiro Maior, 2018; Diniz; Barbosa; Santos, 2009). An example of this was the approval of the Convention on the Rights of Persons with Disabilities, by the United Nations, in 2006, which mentioned the participation of this population as a parameter for the formulation of policies and actions aimed at them (Diniz; Barbosa; Santos, 2009).
In theory, the term “disability” has also taken on new meanings, moving from a disabling conception of the individual (the medical model of disability) to a social model of the definition, placing the individual in the position of an agent of society, who shares what they have to offer (Diniz; Barbosa; Santos, 2009 ; Merry; Edwards, 2002 ; Mota; Bousquat, 2021).
PwD occupy an important space in each territory and the uniqueness in outlook and assistance must be considered, as this reality impacts health and sustainable development indicators, which is reason enough for the social segment of this population to have their specific rights and needs included in the political agenda of all countries (De Loureiro Maior, 2018). In Great Britain, there were around 8.5 million PwD, of whom around 6.5 million were of working age (Merry; Edwards, 2002). In the United States, the 2000 census reported that there were 47.9 million PwD, representing about 19.3% of the population (Glassman; Subar, 2008). In Brazil, the 2019 National Survey of Health, released by the Brazilian Institute of Geography and Statistics (IBGE), showed that PwD represented 8.4% of the population, or 17.3 million people.
There is extensive literature showing that PwD are more likely to have dental diseases, missing teeth, and difficulty in obtaining dental care than other members of the general population (Glassman; Subar, 2008). In dental research, several studies on this type of assistance aimed at PwD have been published since the 1970s, of which we highlight the following: research into oral care (Van Grunsven, 1976), the perception of parents and dentists about dental treatment (Davies; Holloway; Worthington, 1988), the use/attendance of dental services (Waldman, 1989; Van Grunsven; Cardoso, 1995), and the situation of dental care as a public policy in different countries (Haddad; Tagle; Passos, 2016).
The growing awareness about the need to implement effective and lasting public policies for the inclusion of PwD (Monteiro et al., 2018) has helped to put demands for the approval of normative provisions that ensure the rights of PwD at the center of the debate. Some examples are the Americans with Disabilities Act in the USA (Surabian, 2016), the Disability Discrimination Act in the United Kingdom (Qureshi; Scambler, 2008), as well as the National Health Policy for the Disabled Person and the Care Network for People with Disabilities (Rede de Cuidados à Pessoa com Deficiência), both in Brazil. These policies can be more or less comprehensive, depending on the social protection model adopted in each country. The financing proposals, service structure, and coverage of actions, among other aspects, vary according to the model. Thus, it is everyone’s responsibility to grant PwD the same rights as those who are not in this condition (Monteiro et al., 2018).
The need to guarantee rights for PwD is the subject of study in scientific literature, especially from a perspective of universalizing rights, inclusion of those who are different, and promotion of health (De Paula; Maior, 2008; Carvalho; Almeida, 2012). However, no study has summarized researchers’ expectations/recommendations regarding dental care for PwD as part of the right to oral health. A review of these expectations/recommendations could help decision makers understand the possibilities/limits arising from the respective social protection models, which determine the design of the health systems adopted in each country and the proposals for implementing strategies aimed at expanding access. and increasing the quality of oral health care for PwD. Furthermore, it could help to recognize the importance of social participation in the fight to guarantee the rights of this population.
This study aims to produce a synthesis of the scientific literature on expectations/recommendations regarding dental care as a right to oral health for people with disabilities.
Methods
An integrative literature review was carried out, which is an appropriate type of study when the aim is to produce a synthesis of a given research problem (Whittemore; Knafl, 2005). The following steps were adopted: (1) identification of the research question; (2) selection of keywords and search in bibliographic databases of scientific literature; (3) export of files to the Rayyan platform; (4) removal of duplicates; (5) term mining to determine the inclusion and exclusion of records; (6) selection of records for full reading; (7) assessment of relevance and methodological quality; (8) final selection of articles to be included in the study; (9) data extraction; (10) interpretation and discussion of results; and (11) synthesis of information and production of knowledge.
The guiding question of the research was “What is the state of science on expectations/recommendations regarding dental care as a right to oral health for people with disabilities?” The search was carried out in the following databases: National Library of Medicine (PubMed), Virtual Health Library (VHL), Embase, and Ovid Tools & Resources Portal (Ovid). The search keys were defined based on the Health Sciences Descriptors (DeCS) and the Medical Subject Headings (MesSH). Articles in Portuguese, English, and Spanish were included, published from January 1975 to August 2021. The year 1975 was used as a result of the approval of the UN Declaration of the Rights of Persons with Disabilities (UN, 1975). Chart 1 shows the general search expression used according to each platform. Two independent evaluators carried out the searches to identify the studies.
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Chart 1 List of descriptors used in the search for works according to the selected database, 2021.
The records identified in each database were transferred to the Rayyan tool, which allows term mining to assist the reviewer in screening abstracts for literature reviews. Other interesting features of Rayyan are the independent and simultaneous screening by two or more users, removal of duplicates and labeling references, and highlighting of the keywords (Olofsson et al., 2017).
After transcribing 1357 records into the Rayyan tool, 41 duplicates were removed, resulting in 1316 publications. Then, 304 records were excluded for not meeting the inclusion criteria regarding eligible languages and types of publication, resulting in 1012 works. To identify records compatible with the guiding question, text mining was carried out, as shown in the Flowchart in Figure 1.
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Figure 1 Publication selection flowchart, 2022.
Based on the focus of the study, there was agreement on the inclusion of 29 titles/abstracts and the exclusion of 297 records, obtaining a moderate degree of agreement (Kappa=0.537). After discussing disagreements, 19 more records were included for full reading, totaling 48 articles. The papers were examined according to their relevance to the topic, clarity of presentation, rigor of content, and presence of theoretical references. Of these, 15 were included in the study. Based on the references of the research included, one more document was chosen, totaling 16 articles to extract an analytical category linked to the authors’ expectations and/or recommendations about dental care, such as the right to oral health for people with disabilities.
The content analysis was based on the theory of welfare state regimes, where three models of social protection stand out (Esping-Andersen, 1991). The liberal model, in which health care is regulated by the market and depends on the user’s ability to pay. In this way, the role of the State is limited to the support of philanthropic organizations that provide assistance to the verified poor. The conservative model, corresponding to social insurance, in which health care depends on formal connection to the labor market (regulated citizenship), being financed by contributions from employees and employers, with or without state participation. Finally, the social democratic model, relating to social security, in which health care does not usually depend on the user’s ability to pay and is assumed as a citizen’s right, being financed by resources from the public budget, coming from taxes and other contributions (Esping-Andersen, 1991).
Results
Figure 2 presents the publication selection flowchart. Sixteen works were selected for data extraction. The authors’ expectations/recommendations were based on nine countries: USA, Sweden, Denmark, Norway, Finland, Iceland, France, England, and Brazil. They were presented according to the three types of social protection model mentioned and the characteristics of access to health care resulting from them (Chart 2).
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Chart 2 Objectives of the included articles and expectations/recommendations of the author(s) according to the social protection model of the study country.
Most of the articles included (10/16) were written by researchers from the USA, a country characterized by the liberal model of social protection, their publication dates varied between 1988 and 2016. Among the main recommendations/expectations raised were: the defense of the guarantee of protection of civil rights that would be ensured by a safe, accessible health system guided by Primary Health Care (PHC); the approval of legal mechanisms to enforce these rights; support for agencies that promote research on PwD; and the expansion of financing for public health care programs (including oral health), to expand the supply of services and access to the population. Proposals for reorienting the oral health care model, from a collaborative perspective to enable clinical case management, matrix support between the oral health team and other professionals, and greater resolution were mentioned. With the support of educational bodies and the control of the professional category, it was suggested that oral health service providers for PwD should be qualified in order to respond to the specific needs of this target group. In addition, there was a need both to defend public policies aimed at PwD, in order to attract the attention of policymakers to the priorities appropriate to each specific context, and to formulate clinical guidelines with a view to reducing social injustices and inequalities.
Of the remaining six records, two were recommendations/expectations formulated by researchers from countries characterized by the conservative model of social protection. Published in 1995 and 2019, the studies highlighted the need for professional education for oral health professionals (dentists, oral health assistants and technicians), both in theoretical and practical terms; the provision of systematic and free dental care; mechanisms for improving the work process and qualifying care (organization of services in Health Care Networks (RAS), integration between services, multi-professional work, provision of funding for actions).
The other records were recommendations/expectations proposed by researchers from countries characterized by the social democratic model of social protection. Published between 2002 and 2015, the main aspects raised mentions the expansion of access and accessibility to dental care services for PwD; an infrastructure and workforce that would ensure the quality of care provided to this population; systemic articulation between primary and specialized care services, with an approach centered on users with disabilities; and ethical-professional responsibility in complying with laws related to PwD’s right to health.
Although the principles of social protection are different, some recommendations and expectations were common regardless of the model adopted. These are: the concern to guarantee access to everyone in need of dental care, through an integrated network of services with a structure of equipment, supplies, and a multi-professional workforce adequately prepared and supported by fundings and payment systems for health organizations and services, which ensure an optimum level of quality.
Discussion
This integrative review produced a synthesis of the scientific literature on expectations/recommendations regarding dental care as a right to oral health for people with disabilities internationally. To this end, term mining techniques were adopted to identify studies that explicitly mentioned words such as rights, policies and politics, management/administration, legislation/standards, among other similar words. As a result, the expectations/recommendations originated from studies that shared the defense of dental care for PwD as a human right and a principle of social justice. Since science can help both in perpetuating injustices and promoting paths to social emancipation, it is important to highlight the effort/commitment of researchers from different countries toward the causes of PwD. Nevertheless, from the point of view of the rights of people with disabilities, a complex and sometimes contradictory scenario of proposals was observed, subject to indications with little chance of changing the quality of the response, especially if the contemporary challenges resulting from economic crises and the welfare state, which imply severe constraints on social protection models, are not addressed.
The results showed that the researchers’ expectations/recommendations regarding the extension of the right to health and the menu of care offered for PwD varied according to the social protection model adopted in the country of origin of the respective studies. Common characteristics were also identified, regardless of the model adopted, such as the defense of expanding access to dental care for PwD and the qualification of the actions and services offered.
In the study in which the country’s social protection model was guided by a liberal perspective, the recommendations and expectations highlighted the need to guarantee civil rights by means of legislative mechanisms and reorienting the oral health care model, with public policies aimed at the PwD, as a way of reducing inequalities and injustices. PwD and low-income individuals were eligible for health insurance administered in a decentralized way by state governments, in which care entities received a monthly payment to provide care based on the number of people registered. However, this funding mechanism has aroused great concern among PwD, due to situations where there is no guarantee of coverage. Researchers have warned that this mechanism could put successful programs (hospital dentistry) at risk, as there would be a restricted portfolio of services authorized for payment, and more specific procedures for certain situations would not be covered. In practice, there would be a decrease in the reimbursement of actions, generating a decrease in the supply of services and professionals and an increase in unmet needs (Tegtmeier; Miller; Shub, 2016).
The defense of this financing mechanism tends to impact especially those segments of the population that depend on access to continuous dental care, such as the most vulnerable, among them the PwD, which is why researchers from one of the included studies argue that it is necessary to invest in equity as a guiding principle of health policy, in professional partnerships and community interest groups, and to attract policymakers to frame the model in the context of social justice (Tegtmeier; Miller; Shub, 2016).
However, this framing is not a trivial matter and requires tackling the inefficiencies generated by the lack of an integrated system that can promote an appropriate combination of personal medical and dental care and public health measures, as well as implementing financing and payment mechanisms adjusted to health risks and the costs of procedures (Chernichovsky; Leibowitz, 2010). In unregulated health systems, where the logic of the free market prevails, people with disabilities tend to be particularly disadvantaged. Studying the effects of neoliberal reforms on the trajectory of health systems in Greece and Chile, analysts have commented that PwD can be seen as “expensive bodies” that consume more resources and should therefore be held responsible for their own health, completely ignoring the social determinants of health and the principles of social justice (Sakellariou; Rotarou, 2017).
The recommendations and expectations of studies in countries whose social protection was guided by a conservative model highlighted the need for professional qualifications for oral health workers, systematic and free dental care, integration between services, multi-professional work, and provision of funding for actions. The context referred to the Nordic countries (Sweden, Denmark, Norway, Finland, and Iceland) and France, which shared a common basis regarding the organization of health care through compulsory social insurance. Universal coverage was regulated by the state, financed by work-related social contributions and taxes, and health care was provided by public and private providers. Among the differences, there were variations in the participation of voluntary health insurance in the financing of health care and the extent and scope of public health strategies (Winkelmann; Gómez Rossi; Van Ginneken, 2022).
Integrated services that coordinate care tend to increase accessibility, especially if guided by a health network perspective, as they improve access to treatment and ensure coordination, continuity, and multidisciplinarity of user management in their health territory (Gondlach et al., 2019). Integration and coordination of care are fundamental to reducing barriers to accessing services at different levels and within the same level of the health system (Almeida et al., 2018). However, the problem of integrating services is a common challenge in many health systems, especially those where public and private providers compete with each other. Generally, dental and medical care in these systems operate in separate domains (silos), with parallel education and health policies under different professional cultures and funding models (Winkelmann; Gómez Rossi; Van Ginneken, 2022). Without a broader approach that considers the establishment of regulatory mechanisms aimed at integrating services, and the implementation of qualification strategies aimed at strengthening multi-professional work and the coordination of care, it is unlikely that these challenges will be addressed in countries whose social protection is guided by a conservative model.
The provision of funding for actions appeared as an expectation and recommendation raised by the authors, however, it is necessary to consider that, since 1970, neoliberal reforms have been implemented to contain welfare state spending, especially in the social area, in order to produce economic growth (Sakellariou; Rotarou, 2017 ; Steudler, 1986). In France and Belgium, among other European Union (EU) countries, direct payments for dental services have accounted for the majority of finance sources, due to low coverage by public or private dental health insurance (Winkelmann; Gómez Rossi; Van Ginneken, 2022). On the other hand, in the Nordic countries, provision outside private practices generally includes oral health care for statutory employees, preventive services and emergency care. Public provision is most pronounced in Sweden and Finland, where most dentists work in public dental clinics or municipal health centers, which focus on children and adolescents. In Norway, compulsory dental care is provided by salaried dentists in health clinics run by the local authorities. The private sector generally takes care of adults, who may receive reimbursement from the state, depending on the service (Winkelmann; Gómez Rossi; Van Ginneken, 2022). In the social democratic model, the main recommendations and expectations raised mentioned the need to expand access to dental care, with adequately sized infrastructure and workforce, and greater systemic articulation between care levels. In Brazil, one of the countries reported, the need to expand inclusive policies that ensure greater accessibility to health services for PwD was mentioned by other researchers as an important factor that has not been guaranteed, compromising the principle of equity (Castro et al., 2011 ; Condessa et al., 2020). As the continued expansion of the private sub-sector is subsidized by the Brazilian state, the public sub-sector becomes underfunded (Paim et al. 2011), potentially compromising its ability to invest in quality care and expanding access to services for PwD and the population in general. In the United Kingdom, another country analyzed, the authors also mentioned recommendations for services in order to make them more inclusive and accessible, either through adjustments to their physical structure or changes to the policy that guides care practices (Merry; Edwards, 2002 ; Qureshi; Scambler, 2008). These changes are not simple. Factors such as high cost, prolonged disruption, and lack of financial incentives can discourage service providers. A disability rights commission established by the British parliament has been working since 1999 to monitor, eliminate discrimination, and promote equal opportunities (Hurstfield et al., 2004). In 2007, the committee was disbanded and its functions taken over by an equality and human rights committee.
The need to increase access in order to reduce inequality appeared as a recommendation and expectation common to all social protection models. It requires greater availability of resources (adequate funding) and management strategies (investment in PHC as the preferred gateway and integration of services) to organize the care network (Menicucci, 2019). In France, the law acknowledges the State as responsible for compensatory measures to ensure equal access to healthcare for people with disabilities. However, there is no system within French dentistry to guarantee this right. The local response to the problem has been to organize services into care networks, with PHC as the coordinator of care (Gondlach et al., 2019). In Brazil, PHC is the form of organization of the care model, of a comprehensive and universal nature (Menicucci, 2019). Some expectations and recommendations raised by authors who study dental access for PwD in the liberal model highlight the need to centralize care in PHC, in an effective, efficient, safe, and user-focused way (Edelstein, 2007).
A permanent threat to the rights of PwD concerns neoliberal reforms. They have profoundly changed health systems around the world, starting in the 1970s and, more recently, in 2008, with the global financial crisis, when several countries implemented structural adjustment programs impacting on various sectors, including health (Sakellariou; Rotarou, 2017). A direct effect of these health reforms was to increase inequality in access to services and widen socioeconomic inequalities. In this way, PwD can be particularly disadvantaged due to their growing health needs, which can reinforce their stigmatization (Gondlach et al., 2019 ; Sakellariou; Rotarou, 2017).
Final considerations
This review sought to produce a synthesis of the literature on researchers’ expectations/recommendations regarding dental care as a right to oral health for PwD. Distinct and common aspects were highlighted, showing that these recommendations have scopes and limits linked to the social protection model adopted in the countries where the studies were published. However, this analysis did not address the effect of health policies, especially oral health policies, on dental care for PwD, as, for example, a mechanism for reducing inequalities in access to health care in countries with the same or different social protection models. Possible areas of shading that exist between different mixed models, characterized by the diversity of arrangements between private entities under varying degrees of regulation by the public entity (social organizations, public-private partnerships), were not considered either, suggesting the need for studies along these lines. Although science has the role of subsidizing structural changes, it is not always considered, given that the decision is subject to multiple determinations of the political-social context and the different conjunctures of each moment. Another limitation concerns the non-inclusion of gray literature, such as laws and normative acts that guide dental care for PwD in countries with different social protection models.
Based on this review, we conclude that expanding access is a need shared by all the studies included, regardless of the social protection model adopted. In the liberal model, the main expectations and recommendations were to ensure civil rights and reorganize the oral health care model. The conservative model highlighted the need for professional qualifications for oral health workers, systematic and free dental care, integration between services, multi-professional work, and provision of funding for actions. The social democratic model called for the qualification of infrastructure and the workforce, as well as systemic coordination between care levels. A complex and sometimes contradictory scenario of proposals was observed, subject to indications with little potential to change the quality of the response, especially if the contemporary challenges arising from the economic crises and the welfare state are not taken into account, which imply serious constraints on social protection models and the rights of PwD.
1 This work was financed by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) - Brazil - Financing Code 001.
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Abstract
Knowing and synthesizing expectations and recommendations on dental care as a right to oral health for people with disabilities (PwD) is essential to assist decision-makers. An integrative review was carried out, searching PubMed, Embase, LILACS, and VHL databases for articles published up to August 30, 2021. Term mining techniques were used via the Rayyan platform. Content analysis was based on welfare state theory. Sixteen articles were included. Expanding access was a need shared by all studies. The main expectations and recommendations were guaranteeing civil rights and reorienting the oral health care model (in the countries of liberal model); the need for professional qualification, systematic and free dental care, integration between services, multidisciplinary work and guaranteed financing (conservative model); qualification of infrastructure and workforce; and systemic articulation between care levels (social democratic model). We observed a complex and sometimes contradictory scenario of proposals, subject to indications with little potential for change, especially if we ignore contemporary challenges arising from economic crises and the welfare State that imply serious constraints to the models of social protection and the rights of PwD.