“The user is not invisible, the service is invisible”: mobilization of professionals providing care to people with stomas and the fissures produced

Abstract

This study aimed to understand the interprofessional team's perspective of the social visibility of the Specialized Care Service for People with Stoma, focusing on the actions of the Awareness Week of People with Stoma. This is a qualitative study based on Health Sociology and Émile Durkheim's concepts of social and moral facts. The research locus was the Stoma Care Service in Belém, Pará, Brazil, involving 17 professionals. Data collection included semi-structured interviews, direct observation, and field notes, analyzed using Reflexive Thematic Analysis. The service was described as invisible and stigmatized, revealing public unawareness of its function, prompting professionals to join efforts to increase visibility strategies. The exhibition, the assembly at the City Council, and the awareness walk served as showcases with the potential to increase social engagement and reduce stigma; however, further dissemination is still needed. “Fissures” in care were identified, highlighting the importance of strategies such as tele-consultations and the ideal of service expansion. Although invisible to society, the service is essential. It is advocated that mobilizations for visibility beyond the Awareness Week of People with Stoma are crucial to raising public awareness while simultaneously strengthening the political ideals of users.

Keywords:
Social engagement; Stoma; Social mobilization; Sociology of health; Social visibility

Resumo

O objetivo deste estudo foi compreender a perspectiva da equipe interprofissional sobre a visibilidade social do Serviço de Atenção Especializada às Pessoas com Estomia, com enfoque nas ações da Semana da Pessoa com Estomia. Trata-se de um estudo qualitativo, fundamentado na Sociologia na Saúde e nos fatos sociais e morais de Émile Durkheim. O lócus investigado foi o Serviço de Atenção à Pessoa com Estomia em Belém, Pará, Brasil, com 17 profissionais. A coleta incluiu entrevistas semiestruturadas, observação direta e notas de campo, analisadas por meio da Análise Temática Reflexiva. O serviço foi descrito como invisível e estigmatizado, revelando desconhecimento público sobre sua função, o que conclama os profissionais a se unirem em torno de estratégias de visibilidade. A exposição, a assembleia na Câmara dos Vereadores e a caminhada são vitrines que mostram potencial para aumentar o engajamento social e reduzir o estigma; no entanto, ainda há necessidade de maior divulgação. Identificaram-se “fissuras” no atendimento, ressaltando a importância de estratégias como teleconsultas e o ideal de ampliação. Embora invisível para a sociedade, o serviço é essencial. Advoga-se que mobilizações para a visibilidade além da Semana dos Estomizados são fundamentais para sensibilizar a população, fortalecendo simultaneamente o ideal político dos usuários.

Palavras-chave:
Engajamento social; Estomia; Mobilização social; Sociologia na saúde; Visibilidade social

Introduction

People with elimination stomas have undergone surgical treatment on the bladder or intestines, requiring them to discharge their physiological waste into a collection device commonly referred to as a “bag”. Cancer, abdominal or pelvic trauma, inflammatory bowel disease, diverticulitis, incontinence, and various other medical conditions may, in some cases, require stoma surgery, which can occur at any age and does not reduce life expectancy (Burgess-Stocks et al., 2022).

With the legal requirement to establish a Network of Care for People with Stomas in Brazil, Ordinance number 400, dated November 16, 2009, was created. It recognizes the right to specialized care provided by an interprofessional team, as well as the free provision of equipment and accessories by the Unified Health System (SUS), thereby guaranteeing these individuals full citizenship status (Brasil, 2009). However, this service has faced periods of material shortages, in contradiction to Ordinance 1,526, issued on October 11, 2023, which regulates the Network of Care for People with Disabilities (NCPD) and emphasizes the distribution of Assistive Technology (Brazil, 2023).

Such regulations underscore the importance of social engagement among people with disabilities. This study focuses on the National Stomized People Day, celebrated on November 16, as established by Law number 11,506, of July 19, 2007 (Brasil, 2007). This date was chosen in reference to the founding of the Brazilian Association of Stomized people (ABRASO) in 1985. Accordingly, it has become common for health services that provide this type of care to organize a week of related activities, bringing together users, families, supporters, companies, and professionals in programs that raise social awareness and visibility for the cause within civil society (Brasil, 2007).

For health services to achieve greater visibility, following the assumption of physical and social rehabilitation, Bauman (2022) argues that it is essential to build an ethical-political community - one that goes beyond a community centered solely on (clinical) problems. However, this goal is negatively affected by the lack of awareness among the working class regarding their right to social control and participation in the SUS. (Miwa; Ventura, 2020).

As a theoretical perspective, the concepts of moral fact and social fact contribute to understanding the social view of groups and the way in which the collective mobilizes within a permanent structure that socially - rather than merely emotionally - entangles individuals’ actions toward solidarity and the functioning of social units and “corporations” (Durkheim, 2019; Vares, 2016). In this sense, by bringing Émile Durkheim into the discussion, it is asserted that the interprofessional team experiences these discrepancies, which makes it relevant to investigate what the author calls Professional Morality. This concept is a special focus within the Sociology of Health, as it is often concealed by common social morality. Such morality is diffuse and does not exert sufficient control over individual actions, thus remaining a scarcely explored topic (Dew, 2007).

In light of this, the research question formulated was: What is the social view of the interprofessional team at the secondary level regarding specialized care and the fissures produced during the Awareness Week of People with Stoma? The objective, therefore, was to understand the perspective of the interprofessional team on the social visibility of the Specialized Care Service for People with Stomas, focusing on the actions carried out during the Awareness Week of People with Stoma.

Methodology

This qualitative study was theoretically anchored in Sociology in Health. Organic Public Sociology advocates for a connection with participants through transformative circumstances and a dialogical relationship with the researcher, who adjusts the research agenda according to the interests of these participants (Braga, 2011).

Durkheim’s sociology (2009, 2019), when applied to Public Health, although functionalist, allows penetration into the microsocial level to explain ideals, playing a role in the moral regulation of contemporary individualistic - and, it may be added, disintegrative - tendencies. In this sense, a characteristic of the interpretation of Moral Facts is the proposal to judge such facts from an idealized standpoint, contrasting what is advocated in health policies with social reality.

Moral acts are tied to goodness and duty; morality begins precisely at the point of connection with the group - something interindividual. Social Facts, in turn, refer to collective ideals unconsciously originating from the coercive power of society, which generate ways of being and thinking, regardless of the individual. The explanation of these facts generally prioritizes the analysis of their functions within the organization of the group (Durkheim, 2009, 2012; Magnelli; Gomes; Jayme, 2018).

The social fact, as a norm, undergoes a process of internalization, being endowed with regularity and explicability. It is, therefore, an element inherent to certain groups and a field of study concerning social solidarity. The moral fact, in turn, refers to the attempt to account for normative customs and social constraints. However, with the shift in sociology toward the subjective pole of morality, attention has turned to explaining the relationship between individuals and collective values, as well as feelings of moral obligation (Karsenti, 2012; Vares, 2016).

The study was conducted in the city of Belém, Pará, Brazil. The research locus was the Ostomy Care Service (SAPE), linked to the Pará State Department of Public Health (SESPA), Level I, which serves 2,753 users by providing interprofessional care and material supplies. Other sources of data included photographic records, notes on a public exhibition in a shopping mall, and notes from a plenary session at the City Council held on November 16, 2023, to commemorate Ostomate Week. It is noteworthy that all professionals were present on these occasions. Data collection took place during the second semester of 2023.

Sampling was purposive, involving the deliberate selection of respondents (Polit & Beck, 2019), consisting of morning and afternoon shift workers (nurses, nursing technicians, social workers, nutritionists, a psychologist, administrative staff, and the coordinator), as well as a representative from a company that provides home follow-up services. However, one professional declined to participate for personal reasons, so the final sample comprised 17 professionals.

Negotiation included presenting the study to the coordination team, and the interviews were conducted by the first author (a nurse), who experienced daily life at the service and interacted regularly with users and their families, especially in the waiting room. The interviews were conducted in a private room, at scheduled times, when participants were available to speak.

The semi-structured script included the following open-ended questions: How do you perceive this service? What is the greatest challenge in your role? How have you managed to overcome these challenges? How does the public administration view this service? How do you perceive activities such as the exhibition, the session at the City Council, and the awareness walk? The interviews were audio-recorded using a Sony Px240 Digital Recorder, converted to MP3 format, totaling 5 hours and 4 minutes.

In sociological research, direct observation is an essential technique (Paugam, 2015), complemented by diary notes on the “collection of situations,” expressions, and meanings produced after turning off the recorder, as well as notes mainly taken in the waiting room. The researcher’s proximity and non-threatening stance facilitated the gathering of observational data and information shared outside the formal interview context. The notes were organized into three categories: descriptive (general aspects of care and service flow), reflective, and selective (as needed for each informant). For data integration, explicit triangulation was employed (Flick, 2009), connecting field notes with the transcribed interviews.

The data collection respected the principle of data sufficiency, acknowledging that the experiential universe of each respondent cannot be saturated. Thus, analytical rigor sufficiency was prioritized as the criterion for interruption. While the saturation criterion is based on the number of participants and seeks to capture experiences that can be summarized within a limited set of respondents, the sufficiency paradigm recognizes that data are constructed pari passu with the social nature of the phenomenon. This criterion allows for specific emergences in each qualitative study, values experiential uniqueness, and emphasizes the interpretive process (LaDonna; Artino Jr.; Balmer, 2021).

For the transcription of the interviews into Microsoft Word files, the Transkriptor software was used. After automatic transcription, each statement was carefully reviewed to correct words that artificial intelligence had misspelled or omitted. In this process, preliminary codes were generated unsystematically. For participant identification, the nomenclature “P” (1, 2, 3... up to 16) was used for Professionals, and “CR” for Company Representative; the triangulation of notes was indicated by curly brackets - { }.

After reading the files of each statement, all were compiled into a single Microsoft Word document (Matrix). Subsequently, a systematic manual coding process was developed, based on the Reflexive Inductive Thematic Analysis (TA), following its six stages (Braun & Clarke, 2019). Similar codes were grouped and organized into new documents. Then, an analytical map was constructed, and finally, the codes expressing facts prompted by social coercion were clustered into themes (Figure 1), according to degrees of similarity. The TA is theoretically flexible, and, in this sense, the epistemological assumptions of Social and Moral Facts were used as the foundation.

Figure 1
Codes and themes

The procedures followed Resolution number 510, dated April 7, 2016, of the National Research Ethics Commission (Conep). Participants signed the Informed Consent Form (ICF).

Results

Visibility strategy to minimize stigmas regarding the Care Program for People with Stoma

The service carries the stigma of invisibility expressed in words like "invisible," "neglected," and "discriminated against". It's a recognized social fact, both in terms of public ignorance and gaps in training. Even so, P7 considered the service "special".

More external awareness - I think it’s a service that could still expand a lot, to become known by the entire population (P4).

It’s still very discriminated against. People have no idea what this really is (P5). {Field note, P5 - After the recorder was turned off: P5 told a story in which a friend, a nursing technician, asked her: “Where do you work?” “At the stoma care service”. “Where’s that?” “Wow, you work with poop?” P5 reflected that it was a professional who said that.}

It’s a special service because there’s very little training in this area during college. It’s a field that, from what I observe, is much neglected in nursing education -one in which we have a lot of access and activity (P7).

Society doesn’t even know it exists {she makes a disappointed face}. People only find out when they need it, then they go looking for it. I think 90% of society doesn’t know it, and that leads to discrimination (P14).

They don’t even know what the service is; if you talk to a user or a family member, they might be able to say something new. But if you go, say, to cardiology and ask: “What do you think about stomized patients?” They’ll look at you and say: “What’s an stomized person?” The user isn’t invisible -the service is invisible. (P15).

Given this unfavorable scenario, greater publicity for the service is essential to ensure social visibility. For P16, it was surprising that a researcher wanted to study the site.

There is a group of people who come here without having anyone to guide them. After the activities carried out the year before last, the service became more widely known, because in the past people didn’t even know there was a place that provided supplies (P3).

{Field note P16 - After the recorder was turned off: P16 asked me how I found the service and what made me think of researching it, given that studies at this location are rare}.

The visibility strategy works as a showcase for the cause and for reality, as highlighted in one of the excerpts: “People, any one of us can have a stoma”.

When I started, it wasn’t much publicized - we weren’t seen, there were very few of us. So people were afraid to go out on the street, afraid that the pouch might open and they wouldn’t know how to change it. Today, what I notice - with the work of the companies, the media coverage, and this active search for information - the internet has helped us a lot. People now come in saying things like, “In a week, when I’m feeling better, can I already go swimming at the beach?” You should! “Can I go back to school?” You can! (P9).

It’s a great showcase {regarding the activities}, allowing people to get to know the service and also serving as a form of engagement for users. I don’t know if it’s the best strategy. Since we’re still at the beginning - this is only the second year all of this has been happening - we don’t have many benchmarks to evaluate it, but I understand that this is a major showcase for engagement, not only for us but for others who can also fight for the cause, who can be multipliers. To expose this situation - that any of us could become an stomized person... When I became aware of that, I said, “People, any one of us could become an stomized person!” [...] I put myself in their place: What would it be like for me to wear a colostomy bag? (Synthesis of P10 and P13).

Most people don’t even know about it, they have never heard of it; we must spread information so that it’s something people understand, know how to deal with, and that reduces prejudice and stigmatization (P11).

I’m not wishing for celebrities to have stomas, but that’s what brings visibility. The service is becoming more and more visible. The ordinance was created because of the vice president [Vice President José de Alencar had to undergo a colostomy], and now there’s Luciano Zafir, Preta Gil... That makes people alert: “Why did that happen?”; “What’s going on?”; “I need to see a physician.” When you go on a walk, people ask, “But what are the causes that could lead me there?” And you {the professional} say, “Intestinal cancer, bladder cancer, appendicitis,” and because of that, they get tested. The stomized person is very invisible. (Synthesis P15 and P16).

These actions are now in their second edition, and the expansion of this “outward movement” favors engagement and media coverage.

There should be more publicity in the press, because it's such a restricted thing, exclusive to here. Many people come here, have already used the bag and materials they purchased for a year, and they didn't know it there was here. There are professionals who work at the hospital and don't know about it. (P12).

Deponent P14 spoke about the need for “some more real things” in the promotion, highlighting that the unfeasibility is expressed even in the location of the service: at the end of the corridor.

Lack of publicity. There should be a walk not just once a year, but at least twice - once in the first semester and once in the second. Not only in the mall {exhibit}, but in places where there are many people. For example, here at Praça da República, there are some people who live here - people experiencing homelessness - who also need to be seen. I believe it should be in places like this. If you ask ten people here on the street, no one knows that this work exists here! No one even knows this place exists! (P14) - {Note P14 - After the recorder was turned off, regarding the location of the service: “Gee, at the end of the hallway - it should be out front, showing everyone this service”}.

This culminated in another concept - Fissures - that the service has been producing positive results. These fissures also seek to demystify perceptions about public service and having a stoma, citing some media personalities who have one.

Visibility of the service. Because, you see, I always say that people from outside, who don’t know, say: “Public servants are lazy. Public servants don’t like their jobs.” And when we go out to show our work, we’re showing that this is not the reality. I won’t say that everyone is 100%, no. We know that in some places it’s not like that, but anywhere you go, there are those who love what they do and those who don’t. These mobilizations make people see one another (P9).

If you think about it, there are so many people who don’t know what this is. Last week, I was exhibiting our service at Pátio Belém {shopping mall}. People would come up and find it amazing! Some arrived asking if it was a craft fair. Others asked if the little bag was for a headache {starts laughing}. It’s normal - it’s not publicized, such a wonderful service like this. There needs to be more outreach, not only locally and statewide, but also at the federal level. There isn’t any (P12).

We are achieving our goal! For our service, it was a huge step forward because we were seen - we had an exhibition. Can you imagine that this came from our service? It’s little? Yes. But since we didn’t have anything before, today we’ve made it. Look at the walk - it’s the service’s second walk, and it’s so emotional {she gets excited}. When we have these end-of-year activities, they love to come, they want to be present, and thank God we’re managing to achieve this - seeking outside visibility to see if we can appear in the newspaper (P15).

Fissures are openings created by mobilizations. They represent a moral fact, evidencing the professional commitment to ensuring that the service is not limited to the mere dispensing of materials as the sole function of secondary education, but also assumes the role of a supported self-care network. Thus, instead of simply distributing equipment, workers seek to promote social rehabilitation (or at least the beginning of it), which creates fissures.

However, this terrain of extramural social mobilization is steep and sometimes even involves the Public Prosecutor's Office.

We held a gathering last year for the first walk. Now, we’re going to hold the second walk - {Field note: P6 showed me the project for the second Week of People with Stoma. With enthusiasm, she told me that the project was written by the team, and that there would be a photo exhibition at the city’s shopping mall, located on a street in downtown Belém, a walk in the Utinga State Park, and an Assembly at the City Council}. In the first project, we went to nursing schools, but my idea was to go to the regional hospitals. There, we have colleagues who are receiving patients who have no idea how to change a bag... When we start to take action, the Public Prosecutor’s Office shows up, and we have to stop and respond to documents (P6).

After many years of care, P9 has observed that prejudices regarding stomas are being overcome, although, for some, “using a bag is a crime”.

It used to be a taboo. What I’ve observed is this: before, when a patient arrived here, the first thing I would ask was, “And what about the noise from the bag?” - because they release gas - “Oh, I’m embarrassed, I’m afraid!” Nowadays, when they arrive and start releasing gas and making noise, no one feels embarrassed. So, for me, that’s very important. Before, our stomized patients would mostly stay at home. Today, they go out. It’s like tuberculosis patients centuries ago - they were isolated, and today they are not. Over time, we’ve noticed that people are less afraid to sit next to an stomized patient, because they used to think, “It’s poop, it’s urine, it’s going to smell”. Thy’ve discovered that’s not the case. However, for many, wearing a bag is still seen as a crime (P9).

The company representative reported the feedback from the users they monitored, highlighting that, when they are treated in the secondary service, they begin to see the SUS in a different way.

It's Rehabilitation. The professionals have extensive experience treating psychopathology. Most of the patients I hear report that they are very well received. When they arrive at the service and see a receptive, helpful team, their mindset changes regarding the SUS (Brazilian Unified Health System) (CR).

Given the fact that they go beyond their capacity to serve the public - sometimes more than 50 people in each shift - the need for therapeutic listening was expressed.

A specific psychology team, professional, uh-huh, I think there should be one here. To provide support for the professionals - we think a lot about the family, we think a lot about the stomized person, but we don’t think about the professionals who are providing care, because we also suffer. It depends on each person, and I try to speak in the best way possible, but there are others who take things personally and become sadder; they already have their own personal problems, which add up to the issues here... If we worked on this psychological side, if we’re giving 80%, we would start giving 100%. So, when we’re well, the care we provide is better (P15).

Care fissures in health education and professional training to expand care

Based on the moral fact of fissures, as previously determined, it unfolds into three aspects: (1) Care fissures; (2) Fissures regarding health education; and (3) Fissures regarding professional training, encouraging the ideal of expansion. Tele-consultations, albeit timidly, are care fissures.

It was a remote nursing consultation, tele-consultations, which didn’t exist before, but since I joined the service, I’ve been trying to implement them, since a large part of the patients come from the countryside. Many times, they don’t come in person, like those who are still at home recovering from surgery. When a patient like that comes without a prior evaluation by a nurse, we end up opting for a video call, and we can see things quite well. We’ve already thought about it - how could we provide online care? If we had a room where we could give guidance and everything: “You could actually conduct this online care for the patients, since we have these questions” (synthesis of P6 and P7).

Fissures in education occur occasionally and, sometimes, with the help of equipment companies.

We need to provide training here with them too. Wow! Not from companies. I do the waiting room. Then I use brochures, I get them in the first regional office, and I do it. Often, it's that nice thing when they ask the question, and along with that, we start to explain more about the pathology and nutrition (Synthesis of P6 and P12).

The ideal of enlargement was constantly mentioned, especially by P6.

The service was invited to give a presentation in São Paulo - it was for the North and Northeast regions - and I gave a presentation. There was a lot of exchange of experiences, and one of those exchanges strengthened even more my desire since I started working here. We had a very interesting experience there involving changing stoma bags. They put on bags filled with yogurt and chocolate, filled them up and applied them on us. We had to wear the bag, then clean, wash, and change it ourselves. There were experiences like that which made us feel how necessary this is - imagine for them, people who don’t have any support. They’re afraid to touch it, the family doesn’t even want to get close, because they’ll only understand what it’s like if we go there and see it ourselves at home. We could start with this project, creating a hub, starting now to make choices, to actively review patient records, and begin... (P6).

Still regarding the social vision of engaged public employees, it was expressed that this service is not a mere dispensing of materials.

They see the service as a network that ensures continuity of care, where they can seek help, be well attended to, and receive guidance. Truly a point of reference, because it’s not just about dispensing; in many places, it’s only dispensing: a person who has no relationship with these individuals. At the URE, it is a network of relationships. And the feedback I have from these people is that they see the service as a support to continue their care and education (CR).

They see it as a light, a doorway to facing an adverse situation, which affects not only the user but also the people around them, who must cope with this new reality (P8).

Notes on progress and the outline of an analytical guide: fissures as a moral fact in the face of “lack of assistance”

A selection of some notes and statements from participants reports challenges, judicialization and situations of lack of assistance.

They need to be aware of what they should seek and what their rights are; they cannot be left without the equipment and must know which place to go: the Public Defender’s Office or the Prosecutor’s Office. Unfortunately, it is a fact that there is a lack (P1).

{Field note on 16/11/2023 - Belém City Council: A nursing representative said that the service is not just the dispensing of equipment. She mentioned that a person with a stoma goes out with his family for an outing and has no bathroom to perform proper hygiene. Thus, she urged the Legislative Branch to conduct a survey of what is being done. A public servant linked to the Public Defender’s Office later stated that cases of “lack of assistance” reach the courts due to difficulties with the number of bags.}

However, CR emphasized how the service stands out in relation to other hubs in Brazil.

Sometimes, there is a period of instability related to access to materials, but that's more recent. But overall, the service has a very wide range of materials. We have pediatric and adult lines, one-piece and two-piece bags. It's a variety of resins and technologies. The range of adjuvants is enormous. I've had the opportunity to visit several centers in Brazil, and I can say that ours is like that: in terms of variety, it's one of the ones with the most access (CR).

Extramural activities and initiatives with a more holistic approach were noticed by the researcher, demonstrating that even the program's ambiance contributes to this analysis.

{Field note P2 - Talks about the first plenary session that was yet to take place, which I attended on November 16, 2023. She reflected on how Belém is behind Fortaleza and needs identification cards that guarantee transportation passes for people with stomas, about the importance of social engagement, and the fear that materials and resources might stop arriving.}

{Field note on November 15, 2023, and corresponding Figure 2 - The exhibition took place in the basement of the Pátio Belém shopping mall, located in the Batista Campos neighborhood. The team engaged with the public using folders and banners, and companies helped decorate the tables, placing equipment and accessories. The service also presented stoma mannequins. The service’s coordination team made personalized shirts.}

{Field note in December 2023 - The service is decorated for festive occasions such as the June Festival, the Círio, and Christmas. Ribbons, lights, ornaments, and wreaths are observed. This locus stands out from the rest of the building, having its own distinctive features and a more cohesive team with its own coordination. The service seeks fissures to make itself seen.}

Figure 2
Assembly related to the exhibition in a shopping mall

The State was mentioned as a “machine”, interested in keeping people active within its productive regime, even without considering the “bare and raw” reality of these populations.

A patient who is well cared for, well guided, and well served by the government is an active person. So, they return to production, they return to participating in the network, the machine, the State. The State has an interest in keeping this machine of active people, their productive activities, alive. If this approach were present, they might see earlier rehabilitation; they see it as relevant, but not with the true importance of the service. They don't have access to this bare and raw reality (CR).

A professional gives referrals to the Association (Figure 3).

I referral it; today, the association is that person's voice in the political arena. So, you need to be connected to the association and attend meetings. I provide contact information during the first consultation, and the contact information is already provided, both for the center and the association (CR).

Figure 3
Association of Stomized People of Pará (ASPA)

Discussion

The dispensing character must be set aside, and the confronting fissures of social individualization and technocracy, made evident during the Awareness Week of People with Stoma, must be expanded. In Durkheim’s (2019) conception, the lack of confrontation of capitalist economic dictates is often accompanied by moral decay, which, in this case, is reflected in a decline in the longitudinal continuity of care.

Regarding Theme 1, which addresses the invisibility of people with stoma, there are theoretical frameworks that explain this condition. Hirano (2019) argues that the social markers of difference must also consider the study of disabilities. Drawing on Hirano’s (2019) classification of racial (phenotypic), cultural (language and habit), and identity (clothing and insignia) markers, this study focused on “insignia,” understood as accessories or garments bearing an identity or religious emblem, often associated with raciality. However, we interpret the insignia as being precisely the collection equipment - a marker of difference and of prejudice-as professional P5 states when noting that others see the service as merely dealing with feces rather than with people with disabilities.

The moral consciousness of the workers presents two aspects: Objective - the pursuit of visibility before the non-stomized population and the State through these fissures; and Subjective - the fissures humanize Secondary Care. Thus, such fissures represent a moral fact that gathers other social facts such as invisibility. The session constituted a moral activity, bringing together individuals interested in collective life and in achieving a higher purpose. According to Durkheim... (2009, p. 69):

The interest of others, we had said, could not have more intrinsic moral value than my own interest. However, to the extent that the other participates in the life of the group, to the extent that he is a member of the collectivity to which we are linked, in our eyes he takes on something of the same dignity and we are inclined to love and desire him. [...] to depend on the social ideal; nevertheless, there is a bit of that ideal in each of us.

A fact that arises from invisibility is that the service seeks to claim its own space. Reinforcing Hirano’s (2019) thesis, precedents were found in Nascimento (2022), who introduces the concept of public invisibility. Although Nascimento (2022) applied this concept to address operational workers, he uses it to demarcate veiled forms of separation among people, generating social exclusion and humiliation. Such forms of reproducing ableism toward people with stomas have a chain impact on both the specialized service and the team’s perspectives, who concretely perceive the need to publicize their work.

In Theme 2, the interpretation of the fissures shows that engagement initiatives depend not only on workers but also on users, the structure/flows of the State, and class struggle. This aspiration for the greater good fits into the professional morality that resembles what Durkheim (2009, 2019) calls a Moral Fact. The greater the group’s awareness and organization, the greater the development of moral aspects within the service, which manifest concretely in the participants’ statements. This professional morality, according to Durkheim (2019), adapts according to its agents, and because it is a kind of morality that not all civil society can perceive, it escapes public opinion and general morality. Nevertheless, it was observed that the workers - people without the emblem marking difference - embrace this cause as their own.

Relating the study’s theoretical perspectives, the Durkheim moral fact is not limited to duty and obligation (as in the case of these workers) but also involves the desirability of mobilization acts and the sui generis pleasure of fulfilling this moral duty, linking the fact to the individual effort of the agents (Magnelli; Gomes; Jayme, 2018). Therefore, even in the face of limited structural and personnel capacity, they make tele-consultations and education possible, recognizing what is good and desirable for the service’s expansion - a moral marker in care provision. For the State’s agencies to enable visibility, social cohesion, and promote structural changes, it is necessary for their managers to be integrated into the mobilizations within the Health Network.

However, social engagement still needs to generate consistent achievements, such as implementing the identification card for people with stoma in the Belém center and increasing social awareness. Action planning and media exposure could help build structured engagement processes. According to Henriques and Mafra (2006), individuals’ efforts deserve to be publicized, and the results and progress measured. Such management of social actions would enable local and regional adaptations of public policies, the politicization of users, and the strengthening of social communication.

The dynamics of non-confrontation and demobilization favor the neoliberal state, which feels at ease withdrawing rights while securing monopolies and private apparatuses of control over bodies (Fontes, 2017). When considering macro-social achievements, one must also take into account the historical micro-social accomplishments that pave the way for the recognition of rights, the adherence of the masses, and the capacity to engage in dialogue with the dominant classes, which (unfortunately) are the ones who ensure such rights.

In Theme 3, of an explanatory nature, the field notes indicate that dynamics of power depend on political life. Dreifuss (1993) argues that associative articulations possess a regulatory character over their participants, granting them a mobilizing aspect. Such mobilizations, led by professionals, share challenges with the community in the pursuit or expression of solutions. In Public Health, mobilizations manifest through health campaigns, events aimed at raising awareness about risks and/or promoting health, as well as participation in program goals, as highlighted by the Network for Combating Obesity and Chronic Diseases in Minas Gerais - RENOB-MG (2023).

Social control, which represents the target image of participation in the SUS, will be realized when the municipal structure allows for greater proximity between urban and rural actors within the mesosphere, enabling institutional contestation and fostering interpersonal relations that encourage civic engagement. This includes popular pressure on public administration for better outcomes, performance management systems to foster engagement in social control, and, often, concrete data that allow for monitoring of municipal popular participation (Sabioni et al., 2016).

The public form of the State, which aggregates institutions and ensures the reproduction of social life, must encourage social control. Magnelli, Gomes, and Jayme (2018) state that Durkheim recognized the inescapable nature of conflicts but did not analyze them in depth, which drew Marxist criticism in the 20^th century for his structuralist bias. However, during the preparation of this study, on August 1, 2024, a protest covered by the media took place in front of SESPA (SBT Pará, 2024), following repeated individual legal actions. Reports included accounts of despair, skin injuries, loss of dignity, and embarrassment faced by people with stoma who had not received the necessary supplies since December 2023. This social protest, led by the Stomized People Association of Pará - which has existed for 31 years - highlights the urgency of the issue. It can be inferred that the service standards must not be reduced, ensuring the provision of up to 30 drainable bags per month, as well as skin protection products such as remover or cleansing wipes, protective barrier paste, belts, and protective barrier spray (Brazil, 2021).

According to Bottomore (1976), dissent plays a positive role by promoting change and functioning as a driving force of relationships and organic solidarity, as seen in protests denouncing the inhumanity of neglect. Following this, Bauman (2022) warns of the risks that mobilizations such as the Week of People with Stoma may become mere “Aesthetic Communities” or, jokingly, “carnivalesque communities,” which focus on occasional events without achieving concrete goals or real impact.

This extension of the body - represented using the collection device - creates a range of contexts, repertoires, and prejudices experienced both by the users (stakeholders) and by the service itself (rendered invisible). Accordingly, the handbook Knowing and Applying Social Mobilization emphasizes the importance of social marketing, ensuring that civil society builds awareness around a specific issue and actively engages in micro-social processes (RENOB-MG, 2023). To establish a social mobilization plan, several stages are essential: defining the cause to fight for; identifying the target audience (more broadly) or individuals and their pains; setting tangible goals; determining communication channels; forming a team with diverse skills; identifying partners; and creating an activity plan.

Bringing together media outlets is a necessity, yet the lack of outreach beyond commemorative dates is felt. The Week of People with Stoma seems to represent the main “human” connection for respondents - among stoma individuals, their families, and the political sphere itself. However, this finding is concerning, as this mobilization occurs only once a year.

It can be inferred that capitalism has obscured notions of collectivity, hindering the development of institutional mechanisms for engagement. Although this role should be assumed by the appropriate authorities, in practice it falls upon the professionals and users at the frontlines of the system. Even the low receptivity toward social mobilization can be interpreted as a strategy of neoliberal government (Miwa; Ventura, 2020). As an international alternative, communities of practice have been used as models of social engagement within caregiving practice and the public sphere. These communities bring together various actors - such as health professionals, instructors, caregivers of older adults, community agents, and volunteers - beyond specific diseases and health conditions, catalyzing the struggle for rights (Lazarus et al., 2023).

A limitation of this study was its micro-social scope, given the impossibility of interviewing managers, procurement professionals, and other mesospheric actors within SESPA. Nevertheless, the research contributes both to demonstrating the human dimension of the relationships within this program - aimed at social reintegration - and to highlighting the strength of associations, or “corporations” in the Durkheim sense, which draw isolated individuals into political life.

Final considerations

This research, which aimed to understand the interprofessional team’s perspective on the social visibility of the Specialized Care Service for People with Stomas, focusing on the actions of Awareness Week of People with Stoma, found that although mobilization occurs only during this period, it is legitimate, deserves expansion, and highlights the social markers of difference. Such actions aim to bring the service out of invisibility, functioning as “showcases” that expose the reality that anyone may one day need a stoma; they encourage the pursuit of early diagnosis; bring visibility to the political cause; and denounce periods of shortage of medical supplies.

Raising public awareness of this complex and necessary issue - alongside the magnitude of Brazil’s Unified Health System (SUS) - occurs through the mobilization of users with disabilities, healthcare professionals (not only at the secondary level), political-state agents, and civil society, thereby confronting the limitations of the actions analyzed. The public authorities must be held accountable for: expanding access to equipment and adjuvants; implementing training for colostomy irrigation; and performing stoma reversals in hospitals, in accordance with the National Guidelines for Health Care of People with Stomas. Future studies are encouraged to conduct exploratory research on the procurement of equipment such as Orthoses, Prostheses, and Special Materials (OPME) that make up the SESPA’s inventory, as well as action research that identifies and triggers moral and social issues among stoma individuals participating in mobilizations.

In the current context, neoliberalism has led to the loss of identity in public policies, especially those concerning minorities such as stoma individuals, who do not consume but require resources. Nevertheless, it was observed that public service professionals are indeed ethical and moral. The interviewees understand that the service remains invisible in the eyes of civil society and even within the Healthcare Network itself, yet the users will never be invisible. The State must promote social rehabilitation in a realistic way - not merely out of interest in restoring users’ productive capacity, but also by extending subjectivities into the political sphere. The bureaucracy of procurement processes must not be elevated above social classes or individuals, nor above organic solidarity.

Beyond the theoretical-political aspects of engagement involved in constituting the term “Fissures” as a moral fact, there are ongoing attempts to implement tele-consultations and a demand for program expansion, both of which require investment from SESPA. Considering the vast territorial extension of the state of Pará, such an initiative would serve those unable to travel to the capital. Henceforth, to criticize the network and its often-incomprehensible procurement processes means strengthening the National Care Policy - something different from criticizing the point of service that produces subjectivities and communicates to society: Our service is becoming increasingly visible!¹

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• All research data are available in this text.
• 1
  A.J.S. Correa Júnior, P.E.G. Prates, M.E. de Santana, C.M.S. Paraizo-Horvath, J. C. Aguiar and H.M. Sonobe: conception and design, analysis and interpretation of data; writing of the article, relevant critical review of the intellectual content; final approval of the version to be published; responsible for all aspects of the work in ensuring the accuracy and integrity of any part of the work.

• Editor:
  Breno de Oliveira Ferreira

Data availability

All research data are available in this text.

Publication Dates

• Publication in this collection
  19 Dec 2025
• Date of issue
  2025

History

• Received
  28 Oct 2024
• Reviewed
  10 June 2025
• Accepted
  26 June 2025