Social participation in leprosy control: a challenge for health services


Fabiana Nascimento LopesI; Francisco Carlos Félix LanaII

I M.Sc. in Nursing from the Graduate Program in Nursing at the Nursing School of the Federal University of Minas Gerais. Member of the Nucleus for the Study and Research on Leprosy. Belo Horizonte, Minas Gerais, Brazil. E-mail:
II Ph.D. in Nursing. Associate Professor IV in the Mother-Child and Public Health Nursing of the Department at the Nursing School of the Federal University of Minas Gerais. Coordinator to the. Nucleus for the Study and Research on Leprosy. Belo Horizonte, Minas Gerais, Brazil. E-mail:




The aim of this qualitative study was to examine the process of health service intervention in leprosy control as seen by local health policy council members and community leaders. The study was conducted in August 2013 in the municipality of Almenara, Minas Gerais, Brazil. Data were collected from 10 health policy counsellors and seven community leaders using a semi-structured questionnaire. Data were analysed according to Laville and Dione's qualitative approach. Neither the community leaders nor the health policy counsellors identified leprosy-related measures by health services in the municipality, and took no part, individually or as a group, in leprosy control activities. It was concluded that health services in Almenara are not capable of promoting social participation in leprosy control as required by the National Leprosy Control Programme.

Keywords: Leprosy; prevention & control; health education; consumer participation.




The National Program for Leprosy Control (PNCH) provides that health education practices in disease control should be in accordance with the National Policy for Health Promotion. It should include total care, stimulus to both self-exam and investigation of personal contacts in the house, as well as guidance and support to self-care, prevention and treatment of physical disabilities, and psychological support.1 Those activities are under the range of the three governmental spheres, which must prospect partners with institutions and social entities to develop and disseminate knowledge on leprosy as well as develop a total care net for patients and their families.1

From this stand, formulating a health program project involves not just the development of sanitary awareness capable of reversing population health profiles, but also the formulation of a proposal for increasing social participation as a result of a more democratic vein about public policies. 2

PNCH provides that health education actions should be articulated to social mobilization, in order to engage the different social actors in its formulation, conduction, and evaluation1. In the case of leprosy, PNCH communication is vertical and broken, and campaigns which anchor their actions in educational material prevail over active horizontal participation. A gap is likely to open between production and institutionalization of new intervention methods as well as between that and the discussion of its characterization 3.

Given that context, this paper aims at analysing health care intervention processes regarding leprosy control from health counsellors' and community leaders' perspectives. This article is part of a major project entitled Perspectives from subjects engaged in social movements on leprosy and leprosy control within an endemic area, developed by the Nucleus for the Study and Research on Leprosy. (NEPHANS), of the Nursing School at the Federal University of Minas Gerais.



The PNCH aims at guiding health care practice on several levels of attention by means of strengthening epidemiologic surveillance actions, health promotion, on the basis of permanent education and of total care to those affected by the disease.1

Decentralization of health actions for primary attention (AB) favored higher access to health services by users. Change in health care models has brought about new possibilities to health attention, especially related to change in the health care paradigm, characterized by the replacement of medical specialization by a centralized health surveillance model, with emphasis on the subject and the family4.

Total care to those affected by leprosy requires multidisciplinary team organization within the Single Health System on AB, and on middle and high complexity so that assistance to specific demands for each case can be met by principles of equity and integrity.5 Democratization of AB actions includes social participation and engagement in the control of diseases affecting the population. The formation of social teams organized around its ideals can generate essential changes in the development of social well-being anchored in collective awareness and engagement.6

Nowadays, citizens are absent from the political scene, a fact that can also be observed in the health care practice. That can signal to residues from a health model based on normative and coercive action discourses,6,7 stemming from an oppressive past, which constrained participation and which is still holding to date, accounting for restricted social participation.7,8



Qualitative approach is used for taking meanings and intentionality as essential to acts and to social relations and structures.9

This study was conducted in the city of Almenara, upstate Minas Gerais, which integrates cluster 6 in connection to other cities in the state of Minas Gerais, Espírito Santo, and Bahia. City Health Counselors (CMS) and community leaders (LC) were elected research subjects, on account of their strategic status within the city.

Eligibility observed membership with the Municipal Health Council (CMS) and /or registration with one of the social movements in Almenara. For data collection, 11 title-holders at CMS, and 8 LC were invited; that is, the universe of the present counselors at CMS and that of the registered institutions with the city. The LC were identified with resort to both the social institutions records and the invitation to participation was given to the chairman of the institution. This way, nineteen subjects were elected for the study and seventeen actually participated, seven of which were LC and ten were CMS. One LC declined as well as one CMS, who was out of town during data collection.

Data collection was conducted by the investigator herself by means of a semi structured script. Interviews were recorded with participant's consent, and were immediately transcribed. To ensure anonymity, subjects were identified by the social movement they belonged and to the order interviews were held, as for example: CMS-1 (Municipal health counselor-1).

Data obtained were treated on the basis of Laville e Dionne, qualitative analysis.10 Data treatment ensured development of two analysis units: health service and leprosy: what are they doing? and social participation in leprosy control: a challenge.



Results are broken down according to the two outgoing analysis units in the study, as follows:

Health service and leprosy: what are they doing?

PNCH actions in the city of Almenara have been decentralized to AB since 2005. The city shows a leprosy care model merging the decentralized model, assisting the population covered by the Family Health Strategy (ESF), and the centralized one, conducted by the medical specializations center, the municipal reference to Leprosy care, which assists the part of the population not covered by the ESF (approximately 35%).11

When questioned about the leprosy-related work conducted by the health service, a few of the subjects in the study stated they could not address the theme because they ignored how the service has worked on the disease in the city. The municipal health counselors were among those.

When describing the work developed by the health service, instead of approaching actions taken, the interviewees named the weaknesses, such as high turnover, and lack of interest by professionals, late diagnosis, and difficulty obtaining financial resources.

I think here in Almenara [...] there is lack of physicians and those who are around don't like to see that disease, it's still a very poor job, it's got to be a job really interested in the patient's issue, that of the disease, prevention, guidance, and information around the communities, because that is still lacking. (LC-3)

Weaknesses in PNCH action integration on AB does not generally result from the proposals set up by the Health Ministry, but from the insufficiency of municipal management of ESF, mirrored in feeble work relations, frail labor links, and difficulties with placement of medical professionals, among other aspects. 12,13.

To others, engagement in leprosy control depends on health professionals' will to work on the disease with the population because not often is the disease regarded as priority for the health service.

I think today they are more highly concerned with something else, they are not concerned whether or not one is affected by Leprosy, or whether one is having a diagnosis, a Leprosy test; they are more interested in blood pressure, heart problems[...] (LC–1)

Health managers must have higher commitment to defining leprosy control actions, regarding it as a priority in the city. When management makes a priority commitment to facing the disease, the health scene can change, with higher detection rates, early treatment, and social participation in the actions developed. 14 Lack of priority engagement of a few diseases portrays part of the crisis in the health sector in Brazil, with utter disrespect to citizens' rights15. However, that must not account for poor quality care resulting from lack of commitment by professional with users. 14,15

Main actions identified by the interviewees are those which give the theme higher visibility, like the use of banners and dissemination campaigns; on the other hand, diagnosis, treatment, patient's follow-up, and actions of lesser visibility were not identified.

No, what I can see is quite a few little signs at the health units [...] which address the disease, what it is, how to identify it [...] signs are what can be seen most, now this kind of program demonstration, automobile rides, TV, radio announcements nothing like that can I see. (CMS–10)

The link the participants made between the actions conducted by the health service and the use of banners, signs, and flyers can be accounted for on the basis of the wide use of those resources to inform about the disease16. Signs and flyers have an educational nature, especially when it comes to the relation between health professionals and population, but they are often used in instrumental and vertical ways with the people, with no interaction between the parts16,17.

The use of signs and flyers as a way to publicize the disease and to bring information to the population was evaluated by participants as insufficient because an expressive part of the people who are assisted at the health centers are not into reading and show low schooling.

I evaluate it as inefficient. Because the way to show the disease is just a visual one, I look at it [...] and must read on and the thing is we don't have a literate society, with reading habits [...] it's poor people, with poor reading habits, he comes into the health unit, he's not gonna read the sign […] this way there is no way to reach the target, to pass on information [...] (CMS –10)

The use of signs is regarded as part of the health services waays, because signs are meant to mobilize the public. However, not always are they read by those who are assisted at the units17. Educational actions can help develop awareness and stand against ignorance or misinformation about leprosy.18,19 When taken in small groups of people, they help interaction, reflection, and development of new skills and knowledge.18 Health care must be developed upon the relation between health professionals, family, and patients and on information exchange, as a way to foster improvement of health conditions and quality of living20.

Difficulty in the development of prevention, publicizing, and leprosy control actions daily, whether at health units or whether with the population, becomes more evident when participants point to the need for working on the disease within health services; for identifying priority regions for control in the city; and for engaging health professionals and social institutions more strongly, actions already provided for at the PNCH.

[...]then I think we could work further in prevention and spot areas in the city with highest prevalence rates and double check whether that is interrelated, whether we can offset the disease in strategic points in the city[...] (CMS–10)

The present health system in the country fails to promote stronger interaction with its social environment.6,7 The search for understanding the real health needs of the population and their social (re) production profile helps understand how there is subject insertion in social context and makes it possible to highlight its health and survival possibilities.18

In the case of leprosy, main challenges in disease control aim both at keeping up quality in services and at ensuring universal opportunities for diagnosis of those affected by the disease, irrespective of where they live21, as well as treatment by competent professionals who could take care not only of the anatopathological aspects but also the psycho social effects of the disease.22

Difficulties health services at Alemara are coping with in disease control favored the interviewees' considering the resumption of the centralized assistance model for leprosy, as it can be strategic to improving access to diagnosis, treatment, and family assistance.

I believe the work on Leprosy had to be ruled by prevention concerns [...], there should be a pole within the community where everybody would go through, would receive guidance, instruction […], would invite a dermatologist or a specialist [...] and could bring them into the city to work within the community[...] (LC–3)

Those aspects point to the need for strategies which might strengthen AB in leprosy control.23 Assistance decentralization of the cases to AB must be regarded as an important action, but not the only one, since a set of regional, cultural, educational, social, economic, geographic, and political factors must be taken into account in formulating strategies.1,24 Actions for diagnosis, treatment, and spread control must be taken at AB, but follow-up of intercurrences, as well as treatment, prevention, and rehabilitation of disabilities must remain centralized. 24

Difficulties and weaknesses could be observed so that actions toward decentralization in service in leprosy cases happen in fact. To overcome those shortcomings, the engagement of health professionals, managers, community, and social movements, in addition to political will, is believed to be necessary to the actions proposed by the PNCH.

Social participation in leprosy control: a challenge

Social control stands as one of the ways for social participation in health. It is related to immediate participation of community in public management, by means of social appropriation of tools for planning, follow-up, and analysis of actions and services. 21 Social control results from democracy consolidation, which widens up the public sphere.25,26 From this stand, the exercise of social control is dependent on participant democracy as well as on participation channels.26

Social participation has been neither exercised nor stimulated consistently and consequently in the country. However, it is as important to overcome hindrances in the way to effective participation as it is to highlight advances identified toward possible changes in health policy, considering users of health services as subjects committed to promoting changes.6

When asked about discussions on leprosy in social movements they take part in, most participants in this study reported the disease has never been on their agenda. Lack of discussion was accounted for on the basis of the non-commitment to leprosy-related issues, to the approach to health issues as a whole, and to the focus on professional category-related issues, among others.

Not really, because we struggle for health as a whole, not for situations or for the disease, our role is to fight for health[...] (CMS-4)

Not really, because we look at category-related issues, like salary issues [...] (LC–7

Lack of political engagement from society as well as lack of political actions engaging citizens more strongly are evidence of the dissolution of the democracy ideal,7,26 as expressed in the Citizens' Constitution.26 Therefore, means to engage community, especially social movements in the control of leprosy and other diseases, must be sought so that will to participate can be made real in actions.

As for actions to fight leprosy, they also reported social movements they took part in never had publicizing actions for disease control, except for the representative of the Children's Pastoral.

No, I'm not saying that they made things happen or participated, because there was no participation. (CMS–5)

The same happened when subjects were questioned whether they had already had any individual form of leprosy-related activity. A large part reported they hadn't, except for the health professionals participating in the study and for the representative of the Children's Pastoral.

Not really, because I've never been invited or told about it. (LC–2)

Development of effective democratic practices can strengthen social control, but it must be underlined that participation is neither a form of contents that can be passed on nor is it conveyed by sheer training. It results from mentalities and behavior to be developed by critical thinking and by citizens'maturing.27 Even after all the engagement in the consolidation of a modern vision of social participation, the frame for social and political reconfiguration has not yet reached sustainable advances concerning civil, political, and social rights. 7

Social engagement in community actions depends on will to engage rather than on development of skills. 27 However, the development of educational actions is believed to move people into engaging into community issues.

Lack of commitment or even lack of understanding of their function with the CMS becomes more pointed in the account one of the participating counselors gave for his non commitment to health actions, by which his inside counseling status excluded activities outside the meetings.

Not really either, we've always been an inside counselor [...] what we most looked forward to was to go out, be free, supervise, pay visits, but were never allowed that privilege, we act a lot more on passing issues [...] but when time comes when you wish you could work together to solve those problems you're nobody[...] (CMS – 2)

The participant's speech points to a mistaken personal stand on his position as a health counselor. To ensure counselors' enforcement of instructions provided for in Resolution nº333/03 (with provisions for job description of health counselors), they must have technical skills, not often shown, which can compromise their effective participation. 28

Counselors are important tools in breaking with traditional management, in the sense that decisions are made in democratic and transparent ways, by means of participative processes. 29 But to make that happen, counselors must be aware of their social responsibilities and must improve their action on ethical and citizenship grounds. 29

Actions by health counselors in the public and democratic realm proves debatable, given the gaps identified between social movements, population, and social control institutionalization which, not seldom, have no other than paper existence7.

Like research elsewhere,30 in face of the goals set up by the World Health Organization, leprosy control was found to challenge health services in endemic places. That challenge refers to the organization of local services for mobilization and for coping with the disease, that is, in face of an extensive incubation period, discrimination, high prevalence rates, among others. 30



On conclusion, health service at Almenara has failed to promote social participation in leprosy control, according to provisions by the PNCH. Health managers and professionals have shown difficulty working on the disease in the community as well as engaging social institutions in disease control. Study participants clearly stated there is no social participation in leprosy control and that strategies in use fail to cause changes among the population.

New investigations prove necessary to disclose the ways health services in Almenara work on leprosy information and scientific knowledge with the population so that failures in communication and publicizing the disease can be more clearly accounted for. Investment must be made in research meant to explore inter relations between social participation, communication, and continuing education on leprosy control actions in endemic areas.

Limitations to this study are related to the municipal and regional places it was conducted, as well as to the reduced number of participants. It must be highlighted, however, that the outline produced ensured evidence of intervention process in the city for leprosy control.



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