INTRODUCTION

Human T-lymphotropic virus type 1 (HTLV 1) is transmitted through blood, vertical, and sexual contamination. Around 5 to 10% of the world’s population has the virus, with it being prevalent in Brazil in around 0.5 to 1% of the population(¹,²), and in some Brazilian states, such as Bahia, reaching 1.76% of the population(¹). There are four subtypes of the virus and type 1 is the one causing myelopathy, leading to neurological complications such as HTLV-1 Associated Myelopathy (HAM), progressing to neurological dysfunction of the lower urinary tract (LUTND). The latter is also known as neurogenic bladder, which may present symptoms of urinary incontinence (UI), overactive bladder, incomplete bladder emptying and urinary retention, leading to the need for clean intermittent bladder catheterization(¹,³). This study focuses on the symptoms of UI, which are broad and generic in people living with HTLV 1, being different from other urinary losses, since it can present several isolated or associated symptoms, making diagnosis and adequate management difficult, consequently requiring multiple therapeutic approaches.

The constant need to know how to deal with chronic health problems changes the individuals’ view of themselves, requiring them to take action to take care of themselves(⁴). In this regard, daily activities initiated and carried out for oneself with the purpose of maintaining life, health and well-being, pass through the perspective of self-care. These activities are learned according to cognitive knowledge, beliefs, values, habits, and practices exercised throughout life and which can be strengthened or impaired, depending on the professional guidance received and the collective culture in which the person finds him/herself inserted(⁴,⁵,⁶).

Self-care is defined by Dorothea Orem as a practice, a performance of activities that the individual carries out for their own benefit to maintain life, aiming at their health and well-being(⁷). Individuals who take care of themselves are the ones who have the capacity and power to carry out this action. By placing nursing in a position of responsibility for caring, these professionals are called by Orem “self-care agents” who also have powers and capabilities to provide assistance and encourage self-care(⁷).

Clinical practice and the literature show that self-care for women and men with UI and HTLV 1 has peculiarities, since several health demands, such as difficulty walking, myalgia, loss of sensitivity, sexual, intestinal and skin changes, are associated with urinary complaints. Therefore, self-care measures and interventions in self-care deficit, well-structured for this clientele, contribute to adherence to nursing actions(¹,⁷). The search for information about the facilities and difficulties encountered by women and men in promoting self-care is essential to identify which aspects of nursing care can be improved and what guidelines are necessary to implement more qualified assistance. The feedback of those who suffer and experience the disease, who learn to deal with chronicity and who seek health services to rehabilitate themselves, are able to report on the treatment, inform the best actions that had an effect on them, and which care and self-care strategies were learned or not(⁵,⁶). To understand these strategies, it is necessary to identify the factors influencing them, which are described here as Conditioning Facilitating (FF) and Hindering (HF) Factors. Thus, it is hypothesized that knowing the FF and HF factors contributes to the implementation of specific self-care actions for the difficulties presented, besides strengthening the actions that have been successful with the facilitators. This research problem arose from practical experience with this population and the need to understand self-care actions for planning nurses’ actions, to make them more assertive.

The complexity of caring for women and men with UI living with HTLV 1 requires current studies that present clear, concise, and possible information for nursing practice. Therefore, the construction of a technical-technological product will contribute greatly to nursing care, a subject that is still little explored in this professional category. For this purpose, the researcher’s immersion in the lived and practical reality of the social actresses and actors under study contributes to the identification of their needs that will support technology development(⁸). This study refers to the first phase of the Praxis Model for Technology Development (PMTD) which seeks awareness of praxis as the first step towards building technology(⁸). Consequently, the objective of this study is to analyze self-care conditioning factors in women and men with urinary incontinence symptoms living with the Human T-Lymphotropic Virus Type 1.

METHOD

Design of Study

Qualitative study, resulting from the first phase, Pragmatic, of the PMTD, which deals with a participatory movement, originating from the practice that was configured in the identification of problems, based on the demands of women and men, the recognition of the collective practice to be employed in the context of self-care in life with UI, the formulation of hypotheses on how to intervene, within the scope of Nursing practice, permeated by the relationship between theoretical support (Self-Care Theory), scientific evidence of UI, and HTLV 1 and clinical practice(⁸).

It is derived from a doctoral dissertation project in nursing, which will proceed to the other phases of the model for producing a social technology product in nursing and health.

Local

The study was carried out between June and July 2023 at an association supporting people with the HTLV 1 and 2 viruses in the state of Bahia, Brazil. The association was founded in 2010, consisting of approximately 600 members living with HTLV. The selection of this location is justified by its character of social empowerment through mutual support, stimulation of the feeling of collectivity, a place for exchanging knowledge that favors the literacy of its members and the general public, in addition to giving visibility to the group needs and political actions in favor of their rights. Therefore, it constitutes a space for people who are aware of their social and health needs, with the capacity to contribute to the objective proposed.

Population and Inclusion Criteria

Seventeen people participated in the study using a convenience sample. The inclusion criteria were: self-identifying as women or men, being an adult, living with HTLV, and presenting a complaint of UI. The exclusion criteria were: pregnant women. Women named themselves after flowers and men after car models.

Data Collection

The hypothesis was selected through practical experience and the need to understand self-care actions and self-care deficits. The pragmatic interpretation of the hypothesis raised was answered in the investigated scenario, where there was already a rapprochement between the moderator, volunteer nurse, the association, and associates. Furthermore, a collection method was chosen, the focus group, which favored the free but targeted expression of women and men for the proposed objectives.

For the focus group meeting, a list of questions was prepared, previously defined by the research group, which aimed to understand how women and men performed self-care and to detect failures in this self-care, through the self-care deficit, and which factors contributed to or hindered this care, with the position of mediator being maintained, without interfering or influencing the dialogues.

The main researcher became the moderator and had three researchers responsible for recording and describing the group’s individual and collective impressions during the meeting. Two meetings for 12 women and five men, lasting 2 hours and 1 hour, respectively, were organized on different days. The specificities of femininities and masculinities were taken into consideration, given the differences between sexes in the way they take care of themselves and see the world, so that the realities experienced could be valued.

The proposed collection method facilitated the implementation of the PMTD, which advocates an approach to the empirical field for better knowledge, observations, and reflections about the experienced reality to be researched(⁸), contributing to the construction of the content of a technological product, final outcome of a larger study.

Self-care theory permeated data collection, directing dialogues in light of conditioning factors, requirements for self-care, and care agents.

The research team had expertise in the method and the theme, working in teaching, research and nursing care. A training course was carried out for the team, who signed the confidentiality agreement to enter the field.

The invitation to participate in the research was made during face-to-face meetings at the association and through a social networking application managed by members. People willing to participate attended the meetings. They signed the Free and Informed Consent Form for approval and, subsequently, the performance of individual and collective interviews. There were no withdrawals from those who attended the meetings.

An individual data collection instrument was developed, consisting of structured questions regarding social, demographic and clinical conditions, with the aim of understanding the profile of the population under study. The interview lasted 5 minutes and, to capture the responses, the Google Forms® platform was used, with the instrument being applied at the end of the focus group.

Data Analysis and Treatment

The meetings were audio-recorded on a mobile phone, with an average total time of 3 hours. For content organization and analysis, the speeches were transcribed in the Microsoft Office Word 2016 and imported into the Qualitative Data Analysis (webQDA) software (license granted by the university), as internal sources, creating a corpus that was accessed online, with thorough reading being carried out by other collaborating researchers (pre-analysis)(⁹).

THE webQDA also allowed material exploration, through exhaustive reading, operationalization of the most frequent words in the content of the communications, and their availability in cloud format, a fact that helped the identification of the recording units and the context in which they were used. This allowed free or hierarchical coding (“tree codes”) and the delineation of semantic categories with precision and objectivity(⁹), according to the second stage of thematic content analysis, proposed by Laurence Bardin(¹⁰).

Due to compatibility for operation on various operating systems, interactive layout, easy access, and task sharing(⁹), the software webQDA allowed the researchers and contributors of this study to jointly carry out the final treatment of the results, the inferences, and the interpretation of the findings, submitting it to an internal evaluation of clarity, reflexivity, explanation, and theoretical density.

The codes, categories and textual analysis were influenced by the Theory of Self-Care and Self-Care Deficit and brought the terms closer to the nomenclatures proposed by the Theory(⁷).

Ethical Aspects

The project was submitted to the Research Ethics Committee, with opinion number 5.883.662/2023 and in accordance with Resolution 466/2012. The precepts of open science were respected, using the guide Consolidated Criteria for Reporting Qualitative Research (COREQ)(¹¹) for qualitative studies, and no artificial intelligence resources were used in the study and writing of this article.

RESULTS

The Participants’ Characterization

The interviews consisted of 17 people, 12 women and five men, characterized in epidemiological, social and clinical data, described in Chart 1 below.

In the pragmatic phase, problems in the collective practice of women and men were identified, with the emergence of codes relating theory to practice, bringing emerging needs, which in the processing of the software WebQDA are called internal analysis codes, with two being identified: FF with six categories and HF with 08 categories. These codes were classified and analyzed within the Universal Fundamental Requirements, of development and health deviation, described by Dorothea Orem’s Theory(⁷).

The empirical findings were submitted to the Self-Care Theory in an inductive data abstraction, through concepts, propositions and statements, giving greater methodological/analytical rigor to the study categories(¹⁰). The theoretical framework considers the facilities and difficulties for self-care as “basic conditioning factors” that influence, helping or hindering, the ability of self-care. Therefore, for the nurse to define self-care actions, first the internal and external conditioning factors, described in Charts 2 and 3 below, have to be listed.

The “internal and external conditioning” factors are within the scope of the “fundamental self-care requirements”, which are classified by Orem as necessary requirements to be raised for planning care actions. These requirements are divided into: “universal self-care requirements”, known as activities of daily living, balance between basic physiological, psychic, social and emotional functions, necessary for human functioning; “developmental self-care requirements”, which refer to the life cycle, the process of human growth and development, respecting children and the older people with the limitations of age for self-care, as well as the ability to adapt to a new reality of life; and finally, the third, “health deviation self-care requirements,” which are concerned with disease conditions, consequences of a diagnosis, or refer to the absence of care.

By listing the requirements, the nurse understands why some women and men are able to develop their “care agency” and others are not, thus moving towards a self-care deficit.

Thematic Category 1: Facilitating Conditioning Factors for Promoting Self-Care

This category presents the theoretical framework regarding the FF experienced by women and men with HTLV 1 in the exercise of self-care for the management of UI.

The FF for performing self-care actions were related to strengthening beliefs, through the promotion of spirituality and adherence to religiosity, acceptance and adaptation to the new health condition after the disease caused by HTLV 1. In terms of adherence to recommended therapeutic measures, knowledge related to the health-disease process and self-care practices strengthened the acceptance requirements. Furthermore, other FFs were present in the experiences of women and men, such as the search for promoting visibility of the identity of people with disabilities, with the consequent reach of a social support network, and the establishment of links to constitute this network, enhanced by the associative movement and family relationships and relationships with people in the social circle. Furthermore, the search for access to health services and meeting with specialist professionals for care directed towards clinical management of UI due to HTLV are present in Chart 2.

Thematic Category 2: Hindering Conditioning Factors for Promoting Self-Care

HFs for promoting self-care were found in the prerequisites reported by the participants. In managing UI, women and men experienced mobility difficulties, problems adapting to the physical structure of the home environment, living with painful manifestations, and weakening of the family support network, especially for women who saw themselves alone for self-care, in contrast to men who had a female family network by their side, just as they gave up their own care to dedicate themselves to others, which contributed to the presence of psychological suffering, producing impacts on psychological well-being and social relationships. Weaknesses in knowledge about HTLV 1, the performance of health professionals and the lack of essential supplies and materials for performing bladder self-catheterization corroborated the HF, which can be viewed in ^{Chart 3}.

Constituent Elements of the Pragmatic Phase of the Pmtd Model

The recognition of the needs of practice, based on the observed reality of empirical data, with the aim of developing nursing and health care technology, occurred through the pragmatic stage of the PMTD.

By raising the requirements of everyday practices and individual and collective problems, a hypothesis was formulated relating all empirical data to the Theory of Self-Care and Self-Care Deficit, as well as to the scientific evidence(⁸), described in Chart 4, which represents a synthesis of the scientific knowledge of the study, with the deduction of the proposal of a protocol.

The survey of FF and HF, the fundamental health requirements, the best self-care actions and intervention in the self-care deficit, were the product of this first phase and served to subsidize the production of the content of a protocol, demonstrating how important this phase of awareness of practice and praxis is.

Immersion in practice helped to break down the complex reality of nurses knowing how to care for women and men with UI living with HTLV 1, considering the multidimensionalities involved in this care, in addition to the emergence of the theory of self-care as a guide for the construction of this phase of the PMTD.

DISCUSSION

This study sought to investigate the conditioning factors experienced by women and men with urinary incontinence due to human T-lymphotropic virus type 1 to promote self-care. The prescription of self-care actions and the assessment of self-care deficits are preceded by FF and HF which are requirements for assessing self-care needs. The dimension of basic requirements encompasses universal, developmental, and health deviation requirements, and when these three types of requirements are met, human conditions function within the range of normality(¹²).

Strengthening belief, through the promotion of spirituality and adherence to religiosity, in people with chronic illness, is used as a coping resource that gives meaning to difficult moments, understanding it as a purpose in life. Religions, believing in the existence of a supernatural force that provides support and sustenance to the person who suffers, encourage resignation, positive thinking that a “Greater Being” intercede for the relief of the problem(¹³). Spirituality/religiosity also contributes to acceptance and adaptation to living with urine loss, promotes greater tolerance to pain, suffering and the understanding that every difficulty has a necessary purpose for growth and evolution(¹³,¹⁴).

The empowerment of women and men to live with urinary incontinence, improve losses, or even become continent, involves the strategy of self-knowledge of their health problem, the causes and the individual effort employed to replicate, at home, the self-care actions prescribed by the nurse(¹²,¹⁵). In addition to the disease becoming visible to oneself, giving visibility to others, not being ashamed to show one’s limitations, asking for help, and recognizing oneself as a person with a disability, but with the ability of self-care, are necessary requirements for implementing self-care(⁶,¹²), as well as recognizing the moment when the support network is necessary to make up for the self-care deficit(¹⁶).

The associative movement, implemented in the association of people with HTLV, contributes greatly to strengthening bonds between peers and mutual help, creating a formal support network, which besides embracing also develops political actions and civil-social representation in political and governmental agencies(¹⁶). In this regard, the nurse needs to incorporate aspects related to social dimensions into the nursing consultation, gathering information and/or indicating participation in collective support groups, associations of people with similar health/illness conditions.

The informal support network made up of family, friends, and neighbors is the basis for making up for self-care deficits. It must be recognized by the nurse so that, when necessary, it can be searched for. By understanding that a person is a multipersonal unit, who is not alone and should not be alone, their means of interaction and relationships must be taken into consideration when assessing needs for constructing self-care actions and self-care deficits(⁷,¹⁶).

The weakening of the support network for women is related to cultural and gender issues, where care is part of the female universe and, therefore, it is up to them to exercise it(¹⁶,¹⁷). Therefore, the HF due to the lack of a family support network involves the difficulty in finding people to help with the care of women, who seek formal support networks such as associations, support homes, and specialized services to overcome the self-care deficit. The male role of being cared for permeates an FF, in which the self-care deficit is supplied by the involvement of female caregivers throughout the process of controlling or containing UI.

The HFs for the self-care are seen as an identified problem that, in search for a solution, supports the nurse in defining the fundamental requirements under which the person finds him/herself so that, in this way, he/she can implement actions(¹⁸). Although some measures are beyond the professional’s jurisdiction, suggestions and referrals can be made aiming at overcoming the self-care deficit, such as physically restructuring the home environment to eliminate mobility difficulties.

Pain experienced by women and men as a chronic consequence of HTLV complications(¹⁹) can be analyzed by the nurse from a conservative perspective, through integrative and complementary health practices, as a therapeutic option in promotion and recovery, emphasizing welcoming listening and interaction with oneself, the environment, and society(²⁰). However, drug measures, with medical assistance, can be implemented while maintaining the leading role of Nursing.

The fragility of the healthcare networks of the Brazilian Public Health System (SUS) for the care of people with HTLV is an obstacle in the management of the virus and its complications, since few Brazilian states have specialized services(²). Invisibility and the lack of public health policies contribute to limited assistance, not covering all the care and self-care needs that these women and men require(²,²¹). The shortage of devices and materials for self-catheterization is another obstacle, leading to discrepancy between what is recommended by the professional and what is distributed by public services. It is necessary to map the dispensing of these products, which helps in the efficient management of distribution by region, respecting the users’ individual needs(²²), reducing anxieties caused by uncertainty about whether or not to obtain the devices.

Given the context and the hindering conditioning factors of psychological suffering presented, perceiving women and men with significant emotional weaknesses that influence family and social coexistence, impacting physical and emotional health, reveals the urgent need for constant psychological monitoring, therapeutic listening actions by the nurse, promoting a positive impact on these people, helping them to develop more favorable and assertive action and reaction strategies, producing positive impacts on psychological well-being, implying adaptations in life to better coexist with the virus(²³,²⁴). Moreover, efforts should be made to expand nursing interventions to promote self-care capacity and reduce deficits, as evidenced in other health/disease conditions and life processes(¹⁷,¹⁸,¹⁹,²⁰,²¹,²²,²³,²⁴).

Nurses have an innate empowerment that can be used to benefit their actions; thus, knowing the clinical and sociodemographic profile, identifying health and psycho-emotional needs, listening to complaints, limitations, social and family reality and self-care of people, contribute to planning the nurse’s actions.

Thus, the identification of conditioning factors for self-care actions and self-care deficits contributes to clinical practice, expanding scientificity in the nursing practice, contributing to the production of technologies and innovation in nursing.

In this study, there are methodological limitations of a theoretical nature, namely: as it is a qualitative cut of the pragmatic phase, it does not yet allow us to know the practical actions of self-care and self-care deficit, only the survey of the conditioning factors that will positively and/or negatively influence these actions, not contemplating all the dimensions of the Theory of Self-Care Deficit and Systems Theory, advocated by Orem. Furthermore, being a group interview, addressing intimate issues such as UI, diaper use, odors, prejudices and stigmas, contributes to possible inhibitions and/or censorship of the participants, which may have reduced the scope and depth of the data gathered; the use of the same research instrument for women and men may have sublimated gender relational aspects specific to each group and/or failed to consider the specificities of sex/gender in relation to genitourinary dysfunctions.

Studies with a larger sample size, with other methodological approaches to self-care, are necessary to support clinical and scientific nursing practice in relation to the clientele investigated.

CONCLUSION

The experience of women and men with human T-lymphotropic virus type 1 mobilized the universal requirements of development and health deviation, which are significantly impacted by hindering conditioning factors, resulting from difficult ambulation, home inadequate adjustment, frequent living with pain, (lack of) self-care to care for others, weakening of the informal support network, (lack of) knowledge/(lack of) preparation of professionals about the disease, lack of supplies/materials for self-catheterization and psychological suffering. However, they triggered facilitating conditioning factors that contributed for the ability to care for oneself, through the practice of religiosity/spirituality, acceptance/adaptation of the health condition, knowledge of the disease, visibility of disabilities, formal/informal support network, access to specialized services/professionals. This content contributed to the production of innovative technology in the clinical-care field in Nursing and Health.

REFERENCES

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