THE MEANING OF WORK FOR MEN WITH SICKLE-CELL ANEMIA AND ULCERS

EL SENTIDO DEL TRABAJO PARA HOMBRES CON ANEMIA FALCIFORME Y ÚLCERAS FALCÉMICAS

ABSTRACT

Objective:

to analyze the meaning of work for men with sickle-cell anemia and ulcers and to discuss the challenges they face to remain in the world of work.

Method:

a qualitative and descriptive study developed in two settings: an outpatient service specialized in dressings of a large-sized hospital and a Stomatherapy Nursing clinic, both linked to a public university from Rio de Janeiro, Brazil. Data collection took place from August to November 2018 by means of semi-structured interviews with 20 men who had sickle-cell ulcers. Lexical data analysis was performed in the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires software.

Results:

the physical, social and psychological hardships caused by the wounds in men who are active in the world of work were verified. In addition to that, it was found that work is of important value for men, in addition to considering it as a shelter to deal with the pain imposed by the wounds.

Conclusion:

work represents usefulness and satisfaction, as it makes it possible to materially provide for men and their families and it reasserts their virility and their dominance in the family and social contexts, in addition to making them feel useful and productive. However, on the other hand, it also produces distress when these men need to stay at work with pain, tiredness, shame and frustration arising from a disease and an injury that alter their body image and productivity, in addition to generating feelings of disgust in their professional collective.

DESCRIPTORS:
Sickle-cell disease; Leg ulcers; Work; Men; Workload

RESUMEN

Objetivo:

analizar el sentido del trabajo para hombres con anemia falciforme y úlceras falcémicas y debatir los desafíos que afrontan para mantenerse activos en el mundo del trabajo.

Método:

estudio cualitativo y descriptivo desarrollado en dos escenarios: un servicio ambulatorio especializado en vendajes de un hospital de gran magnitud y una clínica de Enfermería especializada en Estomaterapia, ambos vinculados a una universidad pública do Río de Janeiro, Brasil. La recolección de datos tuvo lugar entre agosto y noviembre de 2019 por medio de entrevistas semiestructuradas realizadas con 20 hombres que tenían úlceras falcémicas. El análisis lexical de los datos se realizó sobre la base del programa software Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires.

Resultados:

se verificaron los inconvenientes físicos, sociales y psicológicos que causan las heridas en los hombres activos en el mundo del trabajo. También se verificó que el trabajo representa un valor importante para los hombres, además de ser visto como un refugio para lidiar con el dolor generado por la herida.

Conclusión:

el trabajo representa utilidad y satisfacción, ya que permite cubrir las necesidades materiales de los hombres y de sus familias, reafirma su virilidad y su dominio en los contextos familiar y social, y los hace sentir útiles y productivos. Sin embargo, contradictoriamente, también genera sufrimiento porque estos hombres deben permanecer en el trabajo con dolor, cansancio, vergüenza y frustración como resultado de una enfermedad y de una lesión que alteran su imagen corporal y su productividad, además de generar un sentimiento de rechazo en su colectivo profesional.

DESCRIPTORES:
Anemia falciforme; Úlceras en las piernas; Trabajo; Hombres; Carga de trabajo

RESUMO

Objetivo:

analisar o sentido do trabalho para homens com anemia falciforme e úlceras falcêmicas e discutir os desafios que eles enfrentam para manterem-se no mundo do trabalho.

Método:

estudo qualitativo e descritivo, desenvolvido em dois cenários, um ambulatório de curativos de um hospital de grande porte e uma clínica de enfermagem em estomaterapia, ambos vinculados a uma universidade pública do Rio de Janeiro, Brasil. A coleta de dados ocorreu de agosto a novembro de 2019, por meio de entrevista semiestruturada, com 20 homens com úlceras falcêmicas. A análise lexical dos dados foi realizada a partir do software Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires.

Resultados:

verificou-se a penosidade física, social e psicológica que a ferida origina nos homens que atuam no mundo do trabalho. Além disso, constatou-se que o trabalho representa um valor importante para o homem, além de ser visto como refúgio para lidar com a dor imposta pela ferida.

Conclusão:

o trabalho representa utilidade e satisfação, pois possibilita prover materialmente o homem e suas famílias, reafirma sua virilidade e seu domínio nos contextos familiar e social, o faz sentir-se útil e produtivo. Mas, contraditoriamente, também produz sofrimento quando esses homens precisam se manter no trabalho com dor, cansaço, vergonha e frustração decorrentes de uma doença e de uma lesão que altera sua imagem corporal e sua produtividade, além de gerar sentimento de repulsa no seu coletivo profissional.

DESCRITORES:
Doença falciforme; Úlceras de pernas; Trabalho; Homens; Carga de trabalho

INTRODUCTION

The object of this study is the meaning of work for men with sickle-cell anemia and ulcers. In our case, the definition of the term “meaning” involves the individual's affective structure, which is originated from the union of three components: meaning, orientation and coherence. From the work perspective, it is inferred that its meaning is perceived and influenced by socialization, by the experiences in the world of work, by personality aspects and by broader socioeconomic factors. In addition to that, it is considered that the meaning of work comes from historicity; in other words, it is linked to the time lived, to cultural aspects, and to the way of relating to and understanding the world1^-2.

Work in contemporary society is of fundamental importance and central in people's lives, not only because it allows for financial livelihood, but also because of psychosocial aspects such as satisfaction, appreciation, social involvement, affective attachment and usefulness. In addition, work has repercussions on the construction of personal identity3.

From the perspective of sickle-cell disease (SCD) and sickle-cell ulcers (SCUs), it is known that any man with these pathologies faces numerous difficulties inserting or maintaining himself in the world of work. The presence of a chronic disease associated with altered self-image makes men more vulnerable, bringing about consequences to development of their work activities, which has repercussions on their meaning of work4^-5.

SCD is defined as an autosomal recessive genetic disorder that affects the shape and function of red blood cells, leading to a range of systemic complications and exerting a significant impact on people's lives. In this pathology, red blood cells undergo format changes, assuming an aspect of a scythe or croissant. As a result, they become denser and lose their ability to shape themselves to flow through microvascularization, which leads to ischemia, tissue damage, hemolytic anemia, vaso-occlusion and inflammation. This blockage of circulation and, consequently, the impediment of oxygenation to various organs, is the cause of the complications resulting from SCD6^-7.

One of its most recurrent complications is the development of SCUs, also called leg or chronic ulcers. SCUs are cutaneous manifestations commonly located on the lower limbs, areas with little subcutaneous tissue, and they appear either after small traumas or spontaneously, due to tissue hypoxia caused by vaso-occlusive crises6.

These ulcerations more frequently affect people of productive age, with a prevalence of 8% to 10% in homozygous patients, and an incidence above 50% is registered in individuals from tropical areas8. They can lead to disability in men and normally appear after the second decade of life, accompanied by intense, chronic and continuous pain and high predisposition to infection5^-6.

In addition to pain, leg ulcers very frequently present exudation and a fetid odor, negatively compromising the individual's everyday life, with changes in clothing and habits to avoid exposure of the dressing. Thus, important socializing spaces and activities such as education, sports, leisure and work can be impaired or abandoned, having implications on psychosocial and economic development9.

Studies carried out in patients with leg ulcers in public outpatient services from Niterói and in aged patients treated in a wound outpatient clinic and in the polyclinic from Rio de Janeiro have shown that these patients' well-being can be affected precisely by the repercussions caused by the presence of SCUs and, furthermore, it was highlighted that it has consequences in the work environment10^-11.

From a gender perspective, it is noted that there is a hegemonic model of masculinity impregnated in society, in which ideal men should be strong, invulnerable and home providers, being culturally shaped to reject some health promotion and disease prevention practices. Because of this, men are more exposed to risk factors and are less prone to adopting health care measures, seeking assistance mainly on an emergency basis12.

In this sense, men with SCUs suffer impacts in their lives and mainly in the world of work, where they need to keep their jobs and where their vulnerabilities are concealed. Consequently, these individuals are affected both by the disease stigma and by the social context in which they are inserted9.

Nurses' presence and contribution are essential in primary care and the assistance provided to people with SCD and should be efficient and effective in education and health, as well as in the assistance process, mainly because they represent the link between the patient/family and the health team members. This confers them a key position, especially when they resort to educational technology to assist in care provision, enabling comprehensive assistance that is properly directed to the specificities of each person affected by SCUs.

It is relevant to deepen discussions about the meaning of work for men with SCUs because this involves topics that are little developed in Nursing training, especially SCD and male gender issues. In addition to that, it is emphasized that deepening these discussions will contribute to the assistance practice of professionals who care for patients with wounds, such as lower limb ulcers. It will also help to highlight the importance of comprehensive care for these men, as they should not be seen only because of the disease, but in their entirety as social and individual beings. In addition, it will contribute to knowledge production, as the theme that involves the object of this study is still incipient in terms of publication in scientific journals.

Considering the importance of work in the contemporary world, and also that people with SCD present clinical manifestations that impose limitations for work maintenance, the following research question was formulated: which is the meaning of work for men with SCUs, given the difficulties and practicalities they perceive for remaining in the world of work?

Given this problem, the following are presented as objectives of this study: to analyze the meaning of work for men with sickle-cell anemia and ulcers and to discuss the challenges they face to remain in the world of work.

METHOD

This is a qualitative and descriptive study that met the recommendations set forth in the Consolidated Criteria for Reporting Qualitative Research (COREQ)13. It was developed in two settings: an outpatient service specialized in dressings of a large-sized hospital and a tomatherapy Nursing clinic located in a specialized polyclinic, both linked to the health complex of a public university from the city of Rio de Janeiro.

The outpatient service specialized in dressings has three boxes for performing procedures related to stomatherapy care. The team consists of two stomatherapy nurses and a nursing technician, also receiving graduate students in Stomatherapy, thus configuring itself as an internship locus of the Nursing School linked to the university. The Stomatherapy Nursing clinic has four offices: two for specialized care of people with skin lesions, one for individuals with anal and urinary incontinence, and another for people with stomas. The team working in this locus consists of five stomatherapy nurses, one nursing technician and a technical-administrative employee.

The stomatherapy nurses of the aforementioned loci provide care to people with SCUs and promote education in health to stimulate and provide well-being by involving the patients and their families/caregivers in the care process. Such actions are performed by means of the articulation between technical-scientific actions and knowledge and resources made available by the institution during the assistance provided.

The study participants were men with SCUs treated in the aforementioned campi. The following inclusion criteria were established: (i) men with SCUs that developed the injuries while working; and (ii) men aged between 18 and 60 years old. The exclusion criteria were as follows: (i) men who developed the injuries in the retirement phase, (ii) men with some cognitive deficit, and (iii) men with a permanent limitation to work.

To determine the number of participants, it was taken into account that the number of participants in qualitative research should reflect, in quantity and intensity, the multiple dimensions of the phenomenon and interactions throughout the process, thus enabling apprehension of the study object14.

Data collection was conducted from August to November 2019 by means of individual interviews of the semi-structured type and lasting a mean of 60 minutes. The interview script had two parts: the first one included closed questions about the participants' socioeconomic and work characterization, in addition to the clinical aspects related to the injury; the second part had four open questions related to the study object, namely: a) Talk about what it is like to have a leg wound for a long time; b) Repercussions of the wound on work; c) How do you see your work?; and d) How do health professionals, especially nurses, can help you fight against your disease?

The data referring to the participants' characterization were organized, tabulated and analyzed in the Statistical Package for the Social Sciences(SPSS) software program, version 20.0. The data from the interview script were transcribed and organized in a single file to be later treated in the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires(Iramuteq) software, version 7.2, which allows for a lexical data analysis.

Among the advantages of using Iramuteq are the data processing speed, the possibility of using various analyses on the texts and data reliability, by resorting statistical support15. However, it is worth pointing out that the software does not replace or perform the work of the researcher, who, in possession of the results presented by the program, should make inferences and interpret them, trying to turn them into meaningful and valid units.

Iramuteq has five possibilities for data treatment: (i) statistical (lexicographic) analyses; (ii) specificity and factor matching analysis; (iii) Descending Hierarchical Classification (DHC), also known as Reinert's method; (iv) similarity analysis, and (v) word cloud16.

For the purposes of this study, it was initially decided to use lexical analysis through DHC and, subsequently, to process the word cloud. DHC used correlation logic to present a hierarchical class scheme based on the text segments; in other words, the text (from each interview) was processed to identify the vocabulary classes, allowing the researcher to infer the idea that a class conveys17.

Thus, DHC was carried out to verify the meaning of work for men with sickle-cell anemia and SCUs, as well as the challenges they face in the world of work. The researchers interpreted the classes generated based on the findings from the literature, and they sought to consolidate the main arguments in the interviewees' statements.

In turn, the cloud of words referring to each class contributed a graphical representation of the words according to their occurrence frequency in the texts. Thus, the words with a larger size appeared more times in the classes analyzed, and the smaller words did so less frequently16. It is worth noting that robustness of the analysis took into account the words that presented Pearson's chi-square values above 3.84 and the statistical significance given by p<0.0001.

In the current study, two classes were analyzed, exploring their text segments, and, from these, the word clouds processed sought to support the lexical analysis, by displaying the most frequent words in these contexts. It is noted that, preserving the particularities of each approach, both DHC and content analysis start from similar principles: the elaboration of classes based on the principle of mutual exclusion; the guarantee of class and theme homogeneity; and the appreciation of objectivity in the description of the results. For this reason, the method is frequently used with the objective of identifying the themes that comprise a set of texts15.

The study was submitted to and approved by the Research Ethics Committee belonging to Universidade do Estado do Rio de Janeiro and followed all the pre-established principles and guidelines established by Resolution No. 466/2012 of the National Health Council, which regulates research involving human beings. The participants' anonymity was ensured by creating a code generated after the consent process. In this sense, the letter “I” for interview was used, accompanied by a cardinal number, when represented the order in which the interviews were conducted (for example: I1, I2... I20).

RESULTS

The results were initially organized to briefly describe the participants' sociodemographic characteristics and, subsequently, the presentation of the results coming from the DHC and the word clouds were organized.

The study participants were 20 (100%) men with SCUs, with a mean age of 42.25 years old and mostly married (n=12/60%, Standard Deviation=13.29). Of the total number of participants, 13 (65%) self-identified as black-skinned, 17 (85%) earned family incomes of one to three minimum wages, and all (100%) stated professing some religion. Regarding the participants' schooling levels, 11 (55%) stated having incomplete Elementary School, five (25%) indicated complete Elementary School or incomplete High School, two (10%) stated that they had attended High School or incomplete Higher Education, and only two (10%) had complete Higher Education.

With the word cloud analysis in hand and the appreciation of the text segments of the two classes generated by DHC, it was possible to name such classes, as follows: i) Men with sickle-cell ulcers and the relationship with work; and ii) The meaning of work for men with sickle-cell ulcers.

Men with sickle-cell ulcers and the relationship with work

This class included 46 text segments, classified for the analysis related to the impact of work on men with sickle-cell ulcers. The word cloud identified the following most recurrent terms: wound, stay, pain, disease, house, person, feel, life and work (v). By analyzing the text segments in which these terms appeared, it was possible to verify the physical, social and psychological hardships imposed by the wounds for men in the world of work. The word cloud is shown below in order to characterize occurrence of the terms (Figure 1).

Figure 1 -
Word cloud. Rio de Janeiro (RJ), Brazil, 2022.

In men, chronic wounds generate feelings of insecurity related to the work activity, as they represent a critical and undesirable event. In this sense, it was verified that the participants continued working even in the face of difficult situations, such as presence of pain and tiredness and/or a heavy sensation in the legs. However, reports were identified about the importance of work in personal life, including for the psychological relief of the clinical symptoms of the disease, even if there is work overload.

Work shows me that I can keep doing things just like any other person, even if with effort. My job requires staying in a standing position and walking a lot. But it's what keeps my head busy and it also makes me feel useful(I11).

I see my work as a way to allow me to have independence to undergo treatment, to relate to other people, to be a normal person, and to give myself autonomy. Work gives me the chance to take care of myself, it offers me the opportunity to find my place in society, in my community, to be someone. I try to forget the pain this wound causes me and I don't give up(I18).

Work is of important value for men, in addition to considering it as a shelter to deal with the pain generated by the wounds. Consequently, it is evident that work exerts a considerable influence on the participants in terms of personal satisfaction, socialization and productivity.

No matter the pain I feel, I go out to work. There's no other way! But I like what I do, it's good for me. I keep my mind busy! (I07).

I like my job. Meeting people. I think about things other than the wound or the disease when I'm working. It's good for me! (I05).

Chronic wounds and their complications can become a work impediment and often derive in difficulties maintaining an employment contract. In this perspective, there are reports about early retirement and about the need to precariously stay active in the world of work. Under many circumstances, there is even the need to conceal the injury from the employers or co-workers.

I retire; but as I earn very little money, I keep working, doing odd jobs, not to mention that I have sickle-cell disease and a wound in my leg. Thus, I go about bearing my pain, even in a crisis I have to smile at people, even in pain I go, because if I don’t, I earn no money. When pain is very intense, I go to the bathroom to sit down, I cry out of pain many times. Everything hidden, because nobody knows about my wound(I04).

I took leaves and went back to work many times, until they retired me. I see my odd jobs today as something that's good for me. But I prefer not to talk about my disease and wound. I hide them(I20).

The meaning of work for men with sickle-cell ulcers

This class included 32 text segments that reveal the difficulties and practicalities for men with sickle-cell disease and ulcers to remain in the world of work. By means of the word cloud (Figure 2) it was possible to identify the recurrence of some terms, such as no, disease, wound, feel, house and leg. In this way, the text segments revealed men's concern to perform work activities due to the presence of SCUs, as well as the meaning of work for these participants.

Figure 2 -
Word cloud. Rio de Janeiro (RJ), Brazil, 2022.

The presence of SCUs imposes difficulties to remain in the world of work. Thus, it was possible to identify in the text segments the need for adaptation of the workload or even regulation of the hours in which they develop their work activities, due to the symptoms caused by the disease, especially pain and urgency in treating the wounds.

After I retired, I go out to work when pain allows me to. Sometimes pain is so intense that I can't stay still, standing up. This is only possible because I'm a freelancer. I make my own schedule(I07).

Today I sell recycled aluminum to help at home, I collect tin cans on the street. I wander the whole day, but some days the pain is so intense that I can't get out of bed. I go out to work when pain and the wound allow me to(I01).

However, work goes beyond material life sustainment, as it can be asserted that it is a preponderant condition for human fulfillment. In addition to that, it is a way to externalize the inventive and creative capacity. Thus, it was verified that the participants see work as a means of contributing to reducing psychological distress and promoting socialization, as evidenced in the text segments presented below:

My job is everything for me! I earn money, I play, I talk to people, I have fun, I feel important. I really like my job! I say it myself: it's my job! It's in it that I forget, try to forget my anguish and my disease(I05).

My job gives me pleasure, money, it makes me feel important, I relate to people, I meet people and I even forget about the wound. I met my wife at work(I19).

Even in the face of all these positive points, especially in mitigating the psychological distress caused by the act of working, it was still possible to identify that work requires these men to adapt to the limitations imposed by the type of job and the presence of wounds to remain active in work.

Now I work in security. I do patrolling. To balance out this problem in circulation in the legs, I walk, sit, wear elastic stockings, move my legs, put my legs up. I take care of myself(I08).

I do my odd jobs, lightly, in the type of service that I can with my wound. Without physical effort. I don't put on weight or stay standing up for a long time, I run away from heat. And then even my mood improves(I14).

In summary, it can be seen that the limitations caused by the disease in relation to work activities are very present in the everyday lives of these working men and, even in the midst of these difficulties, it is noticeable that, in addition to ensuring material support, work is a way to generate satisfaction and is directly related to dignity in life, making those affected by the disease feel useful.

DISCUSSION

Work is seen as a source of livelihood and as a facilitator of social relations and of the formation of each person's identity. The work activity has central importance in terms of guaranteeing material subsistence, as well as in the construction and reconstruction of human beings' subjectivity, in addition to referencing their social position. It is full of meanings that exert impacts on identity and on the definition of life norms, with a need for personal development to constitute the social environment2.

An important aspect that emerged in the text segments was the issue of feeling useful for the fact of being inserted in the world of work, as work is considered a substantial issue for the individual, in addition to having several meanings for the participants and being a preponderant condition for human fulfillment18.

However, work can be sickening in some situations, mainly because of certain physical characteristics, as in the case of SCUs. SCUs are one of the most recurrent complications developed by individuals with SCD19 and requires a differentiated look20. This fact can be confirmed in some countries, where the frequency of SCU occurrence is from 30% to 40%, with the American continent evidencing from 8% to 10% of individuals with at least one lesion during their lives21. In addition to that, ulcers can relapse, with variations and worsening, depending on individual factors and on the specificities of the SCUs. Therefore, they require adequate prevention and treatment22.

The presence of ulceration, frequently associated with severe pain, compromises well-being, resulting in emotional, social and professional problems, as the ulceration often limits the individual, leading to social and work withdrawal due to its chronicity. In addition to that, this leads to feelings of uselessness due to the inability to cope with the social, cultural and economic demands of the family unit23.

Despite these limitations, many men feel the need for insertion into the world of work, due to financial or gender issues, or even for personal satisfaction. Thus, work is considered as a type of shelter to deal with the pain generated by the wound, as the presence of a chronic wound requires constant emotional coping, such as manifestations of sadness, crying, disability, discomfort, shame, insecurity, change in interpersonal relationships, anxiety and depression24.

In addition to that, people's insertion and place in the social environment are determined by lifestyle and health conditions. Their own behavior is influenced by their health/disease status, interfering in their everyday lives, as there is a need to adapt to the limitations imposed by the work hour load. This need to regulate the time to develop work activities according to the disease and its care also goes through the obligation of those affected by the injury to work to ensure the indispensable minimum for the material needs and to pay for the treatment, either of the wound and/or of SCD24^-25.

The male position is seen as virile in the social context and this requires men to play a role as providers for the family, which denotes a gender issue. Therefore, there are certain barriers, both social and cultural, which translate that men are characterized as strong beings, as they cannot show weakness or insecurity. One consequence of this view is the low demand for health services, which makes them more vulnerable26.

Thus, it can be seen that, in this context, there is a socially-originated imposition that harms these men since, even if they are sick, in pain and with limited mobility, they feel pressured to remain active at work. As a result, they do not seek treatment and it is frequent for them to resort to medications bought in pharmacies by indication of the clerks; other strategies are also perceived, such as religion, to mitigate the manifestations of the disease, thus worsening the clinical condition27.

It is known that work is not only a means of guaranteeing material support in a capitalist society. It represents social status and contributes to a feeling of usefulness and belonging to a group; however, in the presence of pain and other limiting manifestations, remaining active at work is not a positive thing23.

A relevant point to be highlighted is that most individuals with SCD have low schooling levels, a factor that can be reflected in unemployment in adulthood, or in low wages. In addition to that, the current economic model in force - neoliberal - is exclusionary, as those who are not qualified have no place in the labor market. This situation causes labor informality or acceptance of jobs under precarious conditions and wages, impacting these people's well-being. The vulnerability of the socioeconomic condition caused by the presence of the disease can lead to psychological changes and hinder school and work attendance28.

In addition, SCUs expose people to a situation of vulnerability, as the socioeconomic conditions exert negative influences on evolution of the pathology and hinder treatment. Thus, there is a need to continue working precariously, even if they have a pension or social benefit, precisely to maintain their livelihood, as those affected by SCUs feel forced to supplement their income, help with the expenses related to the disease and pay for the family expenses24.

It is emphasized that work precarization represents a labor situation that is distinct in its dimensions, predominantly characterized by lack of control over tasks, unprotection and low remunerations for workers, leading to harms to their health and, on several occasions, to the work task performed. In other words, it implies absence or reduction of worker's rights and guarantees29.

Thus, it is believed that it is crucial to encourage and support people with SCUs in order to minimize the difficulties faced with the disease, as any individual without social, economic and family support tends to present greater problems arising from the disease and greater difficulties to adjust to the domestic routine and to the world of work23.

A study limitation is fact that the data were collected in a micro-universe, especially in two care units from the metropolitan region of Rio de Janeiro. Therefore, the results may not be generalizable; in other words, they should be understood as an expression of a given economic, social, cultural and health context that mirrors the region in question.

However, these results allow redefining Nursing care for men with SCD and SCUs, in order to highlight the complexity that permeates the needs of this population. Thus, it is important to introduce elements from the world of work into Nursing anamnesis and history, so that, from this perspective, actions can be implemented to minimize the psychophysical distress resulting from the work experience.

The results also indicate the need to strengthen Nursing guidelines that promote health and prevent problems, mainly from the perspective of preventing injuries from recurring and limiting activities of daily living, especially those related to work. Furthermore, interdisciplinary action must be strengthened, as these men's health needs are multifaceted and complex; consequently, the need to add other knowledge and health practices is evident, in order to ensure the well-being of this population.

CONCLUSION

The meaning of work for men with sickle-cell disease and ulcers was found to be dialectical, as it represents something that keeps them productive and useful, in addition to allowing them to alleviate the psychosocial impact of the disease. However, on the other hand, it causes hardships due to the work demands, which increases the manifestations of the disease and the ulcers.

In this sense, work represents production and satisfaction, as it makes it possible to materially provide for men and their families, it reasserts their virility and dominance in the family and social contexts, and it makes them feel useful and productive. However, on the other hand, it also produces distress when these men need to stay at work with pain, tiredness, shame and frustration arising from a disease and an injury that alter their body image and productivity, in addition to generating feelings of disgust in their professional collective.

The challenges faced by men with sickle-cell disease and ulcers to remain in the world of work are countless, with the following standing out: (i) the stigma of the disease; (ii) the androcentric configuration of contemporary society, which instills in men the feeling of invulnerability and prevents them from exposing their fears and weaknesses, causing them to seek health care late in time; (iii) pain during the workday; (iv) at the same time, the need to conceal the leg injury; and (v) submission to precarious jobs in order to guarantee better material living conditions.

It is considered that care for the male population with sickle-cell disease and ulcers needs to be seen comprehensively and deeply and from an integral perspective of assistance, highlighting the social context in which men are inserted and the subjectivity that permeates these individuals, going beyond care focused on the physical dimension of human beings.

REFERENCES

• 1. Neves DR, Nascimento RP, Felix Junior MS, Silva FA, Andrade ROB. Sentido e significado do trabalho: uma análise dos artigos publicados em periódicos associados à Scientific Periodicals Electronic Library. Cad EBAPE BR [Internet]. 2018 [cited 2022 Jul 20];16(2):319-30. Available from: https://doi.org/10.1590/1679-395159388
  » https://doi.org/10.1590/1679-395159388
• 2. Bendassolli PF, Coelho-Lima F, Pinheiro RA, Gê PCS. The Meaning of Work during Short-term Unemployment. Psic Teo e Pesq [Internet]. 2016 [cited 2022 Jul 20];32(1):123-32. Available from: https://doi.org/10.1590/0102-37722016012674123132
  » https://doi.org/10.1590/0102-37722016012674123132
• 3. Vicentin PM, Tanaka TF, Camargo ML, Feijó MR, Goulart Junior E. A importância do trabalho na construção da identidade de pessoas com deficiência. R. Laborativa [Internet]. 2021 [cited 2022 Jul 20];10(1):118-43. Available from: https://ojs.unesp.br/index.php/rlaborativa/article/view/3386
  » https://ojs.unesp.br/index.php/rlaborativa/article/view/3386
• 4. Pires RP, Oliveira MC, Araújo LB, Oliveira JC, Alcântara TM. Impact of sickle cell disease on work activity. Rev Bras Med Trab [Internet]. 2022 [cited 2022 Jul 20];20(2):272-8. Available from: http://doi.org/10.47626/1679-4435-2022-641
  » http://doi.org/10.47626/1679-4435-2022-641
• 5. Sousa AR, Jesus AC, Andrade RC, Lopes TF, Jenerette CM, Carvalho ES, et al. Being a man with sickle cell disease: discourses about falling ill and self-care. Acta Paul Enferm [Internet]. 2021 [cited 2022 Jul 20];34:eAPE03384. Available from: http://doi.org/10.37689/acta-ape/2021AO03384
  » http://doi.org/10.37689/acta-ape/2021AO03384
• 6. Granja PD, Quintão SBM, Perondi F, Lima RBF, Martins CLM, Marques MA, et al. Úlcera de perna em pacientes com anemia falciforme. J Vasc Bras [Internet]. 2020 [cited 2022 Jul 20];19:e20200054. Available from: https://doi.org/10.1590/1677-5449.200054
  » https://doi.org/10.1590/1677-5449.200054
• 7. Kato GJ, Piel FB, Reid CD, Gaston MH, Ohene-Frempong K, Krishnamurti L, et al. Sickle cell disease. Nat Rev Dis Primers [Internet]. 2018 [cited 2022 Jul 20];4(18010). Available from: https://doi.org/10.1038/nrdp.2018.10
  » https://doi.org/10.1038/nrdp.2018.10
• 8. BorgesI EL, Spira JAO, Garcia TF. Recommendations for the management of leg ulcers in people with sickle cell disease. Rev Enferm UERJ [Internet]. 2020 [cited 2022 Jul 20];28:e50170. Available from: http://doi.org/10.12957/reuerj.2020.50170
  » http://doi.org/10.12957/reuerj.2020.50170
• 9. Bragion GKP, Costa CMS, Viana EC, Freitas NF. Social aspects of patients with leg ulcer in sickle cell disease: integrative review. RECOM [Internet]. 2017 [cited 2022 Jul 20];7:e1470. Available from: http://doi.org/10.19175/recom.v7i0.1470
  » http://doi.org/10.19175/recom.v7i0.1470
• 10. Sergio FR, Silveira IA, Oliveira BGRB. Clinical evaluation of patients with leg ulcers attended in outpatient clinic. Esc Anna Nery [Internet]. 2021 [cited 2022 Jul 20];25(1):e20200139. Available from: https://doi.org/10.1590/2177-9465-EAN-2020-0139
  » https://doi.org/10.1590/2177-9465-EAN-2020-0139
• 11. Tavares APC, Sá SPC, Oliveira BGRB, Sousa AI. Quality of life of elderly patients with leg ulcers. Esc Anna Nery [Internet]. 2017 [cited 2022 Jul 20];21(4):e20170134. Available from: https://doi.org/10.1590/2177-9465-EAN-2017-0134
  » https://doi.org/10.1590/2177-9465-EAN-2017-0134
• 12. Ruiz JM, Tilio R. Análise do discurso sobre gênero e cuidados em saúde de homens internados num hospital. Rev Psicol Polít [Internet]. 2020 [cited 2022 Jul 20];20(47):132-48. Available from: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1519-549X2020000100011
  » http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1519-549X2020000100011
• 13. Souza VRS, Marziale MHP, Silva GTR, Nascimento PL. Tradução e validação para a língua portuguesa e avaliação do guia COREQ. Acta Paul Enferm [Internet]. 2021 [cited 2022 Jul 20];34:eAPE02631. Available from: https://doi.org/10.37689/acta-ape/2021AO02631
  » https://doi.org/10.37689/acta-ape/2021AO02631
• 14. Minayo MCS, Costa PA. Fundamentos teóricos das técnicas de investigação qualitativa. Rev Lusófona Educ [Internet]. 2018 [cited 2022 Jul 20];40:11-25. Available from: https://www.redalyc.org/journal/349/34958005002/html/
  » https://www.redalyc.org/journal/349/34958005002/html/
• 15. Patias ND, Hohendorff JV. Critérios de qualidade para artigos de pesquisa qualitativa. Psicol Estud [Internet]. 2019 [cited 2022 Oct 28];24:e43536. Available from: https://doi.org/10.4025/psicolestud.v24i0.43536
  » https://doi.org/10.4025/psicolestud.v24i0.43536
• 16. Camargo BV, Justo AM. Tutorial para uso do software de análise textual Iramuteq [Internet]. Florianópolis: Universidade Federal de Santa Catarina; 2018 [cited 2022 Jul 20] 74 p. Available from: http://www.iramuteq.org/documentation/fichiers/tutoriel-portugais-22-11-2018
  » http://www.iramuteq.org/documentation/fichiers/tutoriel-portugais-22-11-2018
• 17. Salviati ME. Manual do Aplicativo Iramuteq (versão 0.7 Alpha 2 e R Versão 3.2.3): Compilação, organização e notas de Maria Elisabeth Salviati [Internet]. Planaltina; 2014 [cited 2022 Jul 20] 93 p. Available from: http://www.iramuteq.org/documentation/fichiers/manual-do-aplicativo-iramuteq-par-maria-elisabeth-salviati
  » http://www.iramuteq.org/documentation/fichiers/manual-do-aplicativo-iramuteq-par-maria-elisabeth-salviati
• 18. Martins RD, CeruttiI PS, Vaz ED, Gallon S. Sentidos do trabalho na percepção de pessoas que exercem trabalho comum. Cad Psicol Soc Trab [Internet]. 2018 [cited 2022 Jul 26];21(1):1-15. Available from: http://doi.org/10.11606/issn.1981-0490.v21i1p1-15
  » http://doi.org/10.11606/issn.1981-0490.v21i1p1-15
• 19. AlDallal SM. Mini review: leg ulcers - a secondary complication of sickle cell disease. Int J Gen Med [Internet]. 2019 [cited 2022 Jul 22];13(12):279-82. Available from: http://doi.org/10.2147/IJGM.S217369
  » http://doi.org/10.2147/IJGM.S217369
• 20. Brito LS, Morais AC, Suto CSS, Silva JC, Jenerette CM, Carvalho ESS. Sentimentos vivenciados por mães e crianças/adolescentes com doença falciforme no contexto da pandemia da COVID-19. Texto Contexto Enferm [Internet]. 2022 [cited 2022 Aug 17];31:e20210287. Available from: https://doi.org/10.1590/1980-265X-TCE-2021-0287pt
  » https://doi.org/10.1590/1980-265X-TCE-2021-0287pt
• 21. Umeh NI, Ajegba B, Buscetta AJ, Abdallah KE, Minniti CP, Bonham VL. The psychosocial impact of leg ulcers in patients with sickle cell disease: I don’t want them to know my little secret. PLoS One [Internet]. 2017 [cited 2022 Jul 25];12(10):e0186270. Available from: https://doi.org/10.1371/journal.pone.0186270
  » https://doi.org/10.1371/journal.pone.0186270
• 22. Monfort JB, Senet P. Leg ulcers in sickle-cell disease: treatment update. Adv Wound Care (New Rochelle) [Internet]. 2020 [cited 2022 Jul 25];9(6):348-56. Available from: https://pubmed.ncbi.nlm.nih.gov/32286203/
  » https://pubmed.ncbi.nlm.nih.gov/32286203/
• 23. Brito LS, Carvalho ESS, Cerqueira SS, Santos LM. From overprotection to stigma: family relations of people with leg ulcer and sickle cell disease. Rev Baiana Enferm [Internet]. 2021 [cited 2022 Jul 25];35:e37793. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/biblio-1149682
  » https://pesquisa.bvsalud.org/portal/resource/pt/biblio-1149682
• 24. Araújo WA, Assis WC, Vilela ABA, Boery RNSO, Rodrigues VP, Rocha RM. Significados de viver com ferida crônica: estudo de metassíntese. ESTIMA Braz J Enterostomal Ther [Internet]. 2020 [cited 2022 Jul 25];18:e2420. Available from: https://doi.org/10.30886/estima.v18.936_PT
  » https://doi.org/10.30886/estima.v18.936_PT
• 25. Amaral JL, Almeida NA, Santos PS, Oliveira PP, Lanza FM. Perfil sociodemográfico, econômico e de saúde de adultos com doença falciforme. Rev Rene. [Internet]. 2015 [cited 2022 Jul 25];16(3):296-305. Available from: https://doi.org/10.15253/2175-6783.2015000300002
  » https://doi.org/10.15253/2175-6783.2015000300002
• 26. Martins ERC, Medeiros AS, Oliveira KL, Fassarella LG, Moraes PC, Spíndola T. Vulnerability of young men and their health needs. Esc Anna Nery [Internet]. 2020 [cited 2022 Jul 25];24(1):e20190203. Available from: https://doi.org/10.1590/2177-9465-EAN-2019-0203
  » https://doi.org/10.1590/2177-9465-EAN-2019-0203
• 27. Issom D, Henriksen A, Woldaregay AZ, Rochat J, Lovis C, Hartvigsen G. Factors influencing motivation and engagement in mobile health among patients with sickle cell disease in pow-prevalence, high-income countries: qualitative exploration of patient requirements. JMIR Hum Factors [Internet]. 2020 [cited 2022 Jul 27];7(1):e14599. Available from: https://doi.org/10.2196/14599
  » https://doi.org/10.2196/14599
• 28. Coleman B, Ellis-Caird H, McGowan J, Benjamin MJ. How sickle cell disease patients experience, understand and explain their pain: an interpretative phenomenological analysis study. Br J Health Psychol [Internet]. 2016 [cited 2022 Jul 27];21(1):190-203. Available from: https://doi.org/10.1111/bjhp.12157
  » https://doi.org/10.1111/bjhp.12157
• 29. Souza NVDO, Pires AS, Gonçalves FGA, Tavares KFA, Baptista ATP, Bastos TMG. Formação em enfermagem e mundo do trabalho: percepções de egressos de enfermagem. Aquichan [Internet]. 2017 [cited 2022 Jul 28];17(2):204-16. Available from: https://doi.org/10.5294/aqui.2017.17.2.9
  » https://doi.org/10.5294/aqui.2017.17.2.9

NOTES

• ORIGIN OF THE ARTICLE

  Extracted from the thesis - The meaning of work for men with sickle-cell ulcers, presented at the Graduate Program in Nursing of Universidade do Estado do Rio de Janeiro, in 2021.

• APPROVAL OF ETHICS COMMITTEE IN RESEARCH

  Approved by the Ethics Committee in Research of the Universidade do Estado do Rio de Janeiro, under opinion No. 3,292,609/2019 and Certificate of Presentation for Ethical Appraisal No. 10523919.3.0000.5259.

Edited by

EDITORS

Associated Gisele Cristina Manfrini, Monica Motta Lino. Editor-in-chief: Elisiane Lorenzini

Publication Dates

• Publication in this collection
  06 Jan 2023
• Date of issue
  2022

History

• Received
  14 Sept 2022
• Accepted
  03 Nov 2022