Abstract
Introduction: The disabilities caused by leprosy, in addition to being stigmatizing, interfere in the emotional, social, and productive stability of the person affected. For this reason, it must be prevented during treatment and post-discharge, when support for self-care is essential. In this context, it is crucial to use educational technologies that encourage the understanding and incorporation of daily care.
Objective: To highlight the contributions of educational technologies used to promote self-care in people affected by leprosy.
Materials and Methods: This is a systematic review conducted in December 2022, in the SciELO, Cochrane Library, Embase, Lilacs, PubMed, Scopus, and Web of Science databases as well as in the gray literature, in which the Catalogue of Theses and Dissertations of the Coordination for the Improvement of Higher Education Personnel (Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Capes), ProQuest, and OpenGrey were searched. The eligibility criteria consisted of primary studies with people aged 15 or over affected by leprosy; healthcare professionals who provided guidance on self-care to people affected by leprosy; the use of educational technologies to guide self-care; and the contributions of their use to the improvement of self-care.
Results: In total, five studies were included; all the manuscripts presented interventions via oral communication; there was a significant improvement in adherence to self-care regarding the face, hands, and feet; in addition, there was a minimization of hospital admissions with increased levels of independence when performing activities of daily living.
Conclusion: The educational technologies were significant, as there was an increase in the frequency of self-care practices and in adherence to leprosy treatment.
Keywords (Source: DeCS): Self care, health education, leprosy, educational technology, systematic review.
Resumen
Introducción: Además de ser estigmatizantes, las discapacidades causadas por la lepra interfieren en la estabilidad emocional, social y productiva de la persona afectada. Por lo tanto, su prevención debe tener lugar durante el tratamiento y después del alta, cuando el apoyo al autocuidado es esencial. Así, es fundamental el uso de tecnologías educativas que favorezcan la comprensión y la incorporación de los cuidados cotidianos.
Objetivo: Destacar las aportaciones de las tecnologías educativas utilizadas para promover el autocuidado en personas afectadas de lepra.
Materiales y método: Revisión sistemática realizada en diciembre de 2022, en las bases de datos SciELO, Cochrane Library, Embase, Lilacs, PubMed, Scopus y Web of Science y en la literatura gris, en la que se utilizó el Catálogo de Tesis y Disertaciones de la Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (Capes), ProQuest y OpenGrey. Los criterios de elegibilidad fueron estudios primarios con personas de 15 años o más afectadas por la lepra; profesionales de la salud que proporcionaban orientación sobre autocuidado a personas afectadas por la lepra; uso de tecnologías educativas a la hora de orientar sobre autocuidado; y contribuciones de su uso a la mejora del autocuidado.
Resultados: Se incluyeron cinco estudios. Todos los manuscritos presentaban intervenciones mediante comunicación oral. Se observó una mejora significativa en el cumplimiento del autocuidado de la cara, las manos y los pies; la minimización de las visitas al hospital y los índices de mejora con el aumento del grado de independencia al realizar las actividades de la vida diaria.
Conclusión: Las tecnologías educativas fueron significativas para aumentar la frecuencia de las prácticas de autocuidado y la adherencia al tratamiento de la lepra.
Palabras clave (Fuente DeCs): Autocuidado, educación en salud, lepra, tecnología educacional, revisión sistemática.
Resumo
Introdução: As incapacidades provenientes da hanseníase, além de estigmatizantes, interferem na estabilidade emocional, social e produtiva da pessoa afetada. Por isso, sua prevenção deve ocorrer durante o tratamento e no pós-alta, quando é essencial o apoio ao autocuidado. Nesse contexto, é fundamental a utilização de tecnologias educacionais que favoreçam a compreensão e a incorporação de cuidados diários.
Objetivo: Evidenciar as contribuições das tecnologias educacionais utilizadas para a promoção do auto-cuidado em pessoas afetadas pela hanseníase.
Materiais e método: Revisão sistemática realizada em dezembro de 2022, nas bases de dados SciELO, Cochrane Library, Embase, Lilacs, PubMed, Scopus e Web of Science e na literatura cinzenta, na qual foram consultados o Catálogo de Teses e Dissertações da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (Capes), o ProQuest e OpenGrey. Os critérios de elegibilidade foram estudos primários com pessoas na faixa etária igual ou superior a 15 anos de idade, afetadas pela hanseníase; profissionais de saúde que realizaram orientações sobre o autocuidado à pessoa afetada pela hanseníase; uso de tecnologias educativas na orientação do autocuidado; contribuições do uso para melhorar o autocuidado.
Resultados: Cinco estudos foram incluídos; todos os manuscritos apresentaram intervenções por meio de comunicação oral; houve melhora significativa na adesão ao autocuidado com a face, com as mãos e com os pés; além disso, minimização de visitas hospitalares e índices de melhora com aumento dos graus de independência durante a realização das atividades de vida diária.
Conclusão: As tecnologias educacionais foram significantes, pois houve aumento na frequência das práticas de autocuidado e na adesão ao tratamento da hanseníase.
Palavras-chave (Fonte DeCs): Autocuidado, educação em saúde, hanseníase, tecnologia educacional, revisão sistemática.
Carátula del artículo
Educational Technologies to Promote Self-Care in People Affected by Leprosy: A Systematic Review*
Tecnologías educativas para promover el autocuidado en personas afectadas de lepra: una revisión sistemática*
Tecnologias educacionais para promover o autocuidado em pessoas afetadas pela hanseníase: revisão sistemática*
Janayle Kéllen Duarte de Sales janayle.duarte@urca.br
Universidade Regional do Cariri, Brazil
Karine Nascimento da Silva karine.nascimento@urca.br
Universidade Federal do Ceará, Brazil
Alissan Karine Lima Martins alissan.martins@urca.br
Universidade Regional do Cariri, Brazil
Maria do Socorro Vieira Lopes
Universidade Regional do Cariri, Brazil
Clodis Maria Tavares clodistavares@yahoo.com.br
Universidade Federal de Alagoas, Brazil
Edilma Gomes Rocha Cavalcante edilma.gomes@urca.br
Universidade Regional do Cariri, Brazil
Aquichan, vol. 25, núm. 1, e2513, 2025
Universidad de La Sabana
Recepção: 18 Abril 2024
Revised document received: 01 Agosto 2024
Aprovação: 09 Dezembro 2024
Publicado: 10 Dezembro 2024
Introduction
Leprosy is an infectious, dermato-neurological disease, whose bacillus affects primarily the skin and peripheral nerves, which can lead to severe physical and psychosocial disabilities, especially when diagnosis and treatment are delayed 1,2.
The disabilities caused by leprosy, in addition to being stigmatizing, interfere with the emotional, social, and productive stability of the person affected. Measures to prevent and treat these disabilities are essential for improving quality of life. In this context, self-care measures provide support to sustain life and health, recover from the disease, and adapt to its sequelae 3,4.
In epidemiological terms, in 2021, a total of 106 countries reported 140,594 new cases of leprosy worldwide to the World Health Organization, most of them originating from India, Brazil, and Indonesia. Brazil is ranked second in the global ranking of countries with a high burden of the disease. In 2021, the country reported 18,143 new cases of leprosy, with a detection rate of 8.51 cases per 100,000 inhabitants 5.
Therefore, in leprosy, self-care is essential for the prevention of disabilities and must be implemented by promoting a healthy and favorable environment, with health education practices and the use of educational resources that enable proactive changes in the people. In this context, it is essential to use educational technologies (ETs) that favor the understanding and incorporation of daily care 6,7.
In terms of educational tools, the literature shows they have a crucial role in the health learning process. This process can be understood as the construction and acquisition of knowledge, skills, and competencies over time, through experiences, practices, and interactions. Educational tools have contributed to this development by expanding access to knowledge, stimulating interactivity, allowing for the personalization of content, facilitating collaboration between learners, and meeting the demands of technological innovation. Therefore, the use of ETs has transformed the way students and healthcare professionals construct and apply knowledge 8,9.
Evidence related to the use of ETs for self-care and disability prevention shows that they contribute to the knowledge of people affected by leprosy. In addition, they strengthen the conception of knowledge and practices and consolidate self-care assertively and efficiently 10.
In the daily routine of healthcare services, there are operational difficulties in performing intervention measures with the use of ETs, aiming to prevent and control disabilities, which are usually restricted to treatment follow-up appointments and also require incentives for people with leprosy to perform self-care 11.
In light of the above, this article starts from the premise that the use of ETs in interventions aimed at people affected by leprosy helps to promote self-care. The importance of synthesizing the use of these technologies to prevent disabilities and physical deformities, and consequently favoring the subjects' autonomy, is highlighted. Thus, this study aimed to highlight the contributions of ETs to the promotion of self-care in people affected by leprosy.
Materials and Methods
This systematic review study was conducted in compliance with the Joanna Briggs Institute's theoretical framework and the Preferred Reporting Items for Systematic Reviews and Meta -Analyses - Prisma checklist 12,13. The review protocol was submitted to the International Prospective Register of Systematic Reviews and registered under number CRD42022366384.
To outline the guiding question, the PICO strategy was used 14, which covered: P: People affected by leprosy; I: Use of educational technologies; C: Comparison with the standard guidance provided without the use of educational technologies; and O: Improvement in self-care. Ultimately, the following question emerged: What are the contributions of the use of ETs to the promotion of self-care in people affected by leprosy?
The following inclusion criteria were adopted: Primary studies conducted with people aged 15 or over affected by leprosy; healthcare professionals who provided guidance on self-care to people affected by leprosy; the use of ETs when providing guidance on self-care; and the contributions of their use to improving self-care. It should be noted that there were no limitations regarding the language of the studies, nor was there a time frame. Studies originating from event proceedings, studies that were not available in full, and repeated or duplicated studies were excluded.
The search strategy was based on the PICO acronym and structured terms from the health sciences descriptors, the Medical Subject Headings, and keywords, in addition to the use of the Boolean operators OR and AND. It should be noted that the search strategy was adapted to the specificities of each database and website, as shown in Table 1.
Table 1
Search Strategy and References Found with Their Respective Cross-References. Crato, Ceará, Brazil, 2023
Source: Prepared by the authors.
The following databases and websites were searched: Scientific Electronic Library Online (SciELO); Cochrane Library; Embase; Latin American and Caribbean Health Sciences Literature (Lilacs); PubMed; Scopus; and Web of Science. The search for evidence was also conducted in gray literature, in which the Capes Catalogue of Theses and Dissertations, ProQuest (Dissertations & Theses), and OpenGrey were searched.
It should be noted the search for evidence was conducted in December 2022, in tandem. The selected articles were exported to the Rayyan reference manager 15, which was helpful in the manuscript screening process. Study selection was performed simultaneously by two independent reviewers. The studies considered eligible were then retrieved in full and the method of the selected studies and their ability to answer the research question were carefully assessed.
In the data extraction phase, a tool was created to obtain the essential information and characteristics of the selected studies, such as title, authors, the year the research was conducted, publication year of the study, language and country where it was developed. Regarding the methodological aspects, the objective, type of study, sample, inclusion and exclusion criteria for participants, and the ETs used were extracted. In terms of results, data regarding the intervention, control, and outcome were obtained, as well as the limitations of the studies.
In addition, the studies were classified according to the level of evidence 16. The internal validity and risk of bias were assessed, considering the following characteristics: Selection bias, performance, detection, attrition, and reporting. For this purpose, the Review Manager software provided by Cochrane was used, with the risk of bias being defined as 'low risk of bias,' 'high risk of bias,' or 'uncertain risk of bias' 17. The results of the systematic review were presented in synoptic figures and tables in a qualitative synthesis.
Results
The systematic search retrieved 2,493 studies from the selected databases; however, after the selection process, five studies were included in this review. Figure 1 shows the flowchart of the selection process according to the guidelines of the Prisma model.
Figure 1
Search and selection process of articles through cross-referencing of terms via databases, search websites, and gray literature. Crato, Ceará, Brazil, 2023
Source: Prepared by the authors.
Regarding the characterization of the primary studies, the publication year ranged from 2014 to 2020. The prevailing language was Portuguese 18-21; in addition, three studies presented an experimental study methodological design 18,19,21 and two were quasi-experimental studies 20,22.
Regarding the main objectives, the studies aimed to assess the physical and functional status of the eyes, hands, and feet 18; the effectiveness of an intervention on adherence to self-care 19; the effect of the mHealth technology on self-care 20,22; and the level of performance and satisfaction of leprosy patients with claw-hand sequelae 21. A total sample of 84 people participated in the interventions. It was found that all the studies had a high level of evidence 18-22. Table 2 summarizes the characterization of the studies included in the systematic review.
Table 2
Characterization of the Studies Included. Crato, Ceará, Brazil, 2023
*LE: Level of evidence. Source: Prepared by the authors.
Table 3 presents the main results of the articles included in the systematic review, in terms of the technology used, the main interventions implemented, patient follow-up, and the central outcomes identified.
Table 3
Main results of the studies included in the systematic review. Crato, Ceará, Brazil, 2023
Source: Prepared by the authors.
Among the ETs used in the studies, it was found that all the manuscripts presented interventions through oral communication 18-22. Alongside this intervention, other ETs were combined with a printed educational manual 18, a mobile communication phone 20,22, a printed self-care calendar 19, a printed self-care plan 19, digital images and videos 20, and assistive technology 21.
Regarding the interventions, these were aimed at performing a sensory and perceptive assessment 19, building a self-care plan 19, and providing a kit and calendar for self-care 19, a self-care manual 18 and resources, such as videos and images 20. It was found that five studies conducted a pre-intervention interview/anamnesis 18-22; three studies reported a neurological assessment of the participants 18,19,22; and three created and applied a specific form to assess self-care of the face, hands, and feet 18-20.
To conduct telephone assessments to monitor self-care and provide educational measures, in one study a mobile device was provided for patients to contact the healthcare professionals 18, while another study used the patients' own communication devices to maintain contact 20. As for the follow-up of participants during the intervention period, it was found that all the interventions were conducted over a prospective period, lasting a minimum of seven weeks and a maximum of 12 months 18-22. After all the interventions had been applied, the participants were re-assessed 18-22.
In terms of outcomes, there was a significant improvement in the sensitivity of the cornea, lower limbs, and muscle function; in the domains related to pain and social aspects 18; in the increase and improvement in adherence to self-care 19,22 and the superiority of the educational-behavioral intervention in adherence to self-care 19; in addition to the reinforcement of face, hand, and foot care 20, the minimization of regular hospital appointments 22, and the improvement rates with increased levels of independence when performing activities of daily living 21.
Regarding the assessment of the risk of bias, its distribution was classified as shown in Figure 2.
Figure 2
Assessment of the Risk of Bias of the Studies Included in the Systematic Review. Crato, Ceará, Brazil, 2023
Source: Prepared by the authors.
It can be concluded that 60 % of the studies presented an uncertain risk of bias regarding the generation of the randomized sequence and 40 % had uncertain bias in the allocation blinding. In terms of participant and healthcare personnel blinding and outcome evaluator blinding and incomplete outcome blinding, 100 % of the studies presented a low risk of bias. In relation to selective outcome reporting, 60 % of the studies presented an uncertain risk of bias and, finally, 80 % were classified as having an uncertain bias in other sources of bias.
Discussion
In light of the findings of this review, significant contributions were drawn from the interventions and the use of ETs with various characteristics in promoting self-care in people affected by leprosy. Strategies such as oral guidance, printed educational resources, and mobile devices for reproducing educational digital media were used. The main outcomes showed benefits for adherence to leprosy treatment and self-care, covering care for the face, hands, and feet, as well as pain management and social aspects.
In line with international studies, guidelines for the prevention of physical disabilities caused by leprosy are becoming prominent in the management of the disease. Thus, professional guidelines address measures to assess neurological function and the level of physical disability, as well as techniques to prevent disability through self-care 23,24. In the present study, the official guidelines for the development of guidance practices, along with other educational strategies, were incorporated in all the studies included in the results.
In this sense, in an experience report of a home-based educational intervention based on Orem's theory, self-care guidelines for people with leprosy covered measures to prevent nasal dryness and promote a reduction in sensitivity, joint swelling, pain, and dryness in the hands and feet 25. Therefore there was an association with the outcome in terms of care for the face, hands, and feet, as well as pain management, shown in four of the studies included in the present review.
Since ETs allow a closer relationship with the varying realities that individuals experience, communication between healthcare professionals and the general population is facilitated, promoting quality, safe, and effective healthcare. Hence, the development of technology is essential to mediate this relationship and is beneficial for both healthcare professionals and patients 26,27. In light of this, it is possible to infer the contribution of ETs to improving patient adherence to leprosy treatment, as found in this review, as well as aspects of health promotion that permeate the individual's social sphere.
The relationship between the use of printed, digital, and oral ETs and health promotion has led to positive effects as well as the frequent use of technologies to facilitate the learning process, as they are capable of stimulating dialog and strengthening the patient-professional relationship. When discussing health-related themes, technology adds cultural and socio-historical elements, enriching the participants' worldviews 28,29.
The contribution of ETs to adherence to self-care was identified in three studies in this systematic review. One study conducted with people with leprosy sequelae showed that the perception of self-care was linked to their oral and physical hygiene practices. The main barriers identified for performing daily activities and self-care are the physical sequelae on the body and the deformities caused by leprosy 30. ETs for self-care in leprosy, especially for personal hygiene, promote the autonomy of those with sequelae, and are an essential factor in overcoming the constraints caused by the stigmatization of the disease 31.
Based on an analysis of the strategies used in the studies found, data from a methodological study proposed reporting on the experience of developing a participatory educational booklet, which showed a potential contribution to promoting self-care in leprosy. This technology is an essential tool for reinforcing the bonds between patients and healthcare professionals, as well as allowing the subjective, cultural, and political aspects that were present in the recipients of the information to be recognized 32. The use of ETs fosters the bond between users and healthcare professionals, which has a direct impact on treatment adherence and effectiveness 33,34.
Furthermore, it was found in another study that the use of educational tools for health promotion measures encourages self-care and reduces disease-related disabilities. As a result, it contributes to improving individual and family quality of life 35. An example of the application of the educational booklet in various individual social contexts is the preparation of a booklet covering self-care for complications stemming from leprosy, with a focus on forest peoples and populations 26. Thus, information becomes accessible and understandable, and measures to promote health education are directed and stimulated correctly according to the target audience.
It is also worth noting that the use of educational booklets is an important strategy for promoting self-care. Thus, the development of booklets aims to produce a focused, organized, and systematic consultation tool to maximize the effectiveness of health education practices. In this sense, they provide resources for integration and communication with the audience in an easy, direct, and engaging way, supporting the dissemination of knowledge and, consequently, improving the standard of healthcare 36-38.
In addition to the above, the use of active learning methodologies to stimulate adolescent protagonism should be highlighted. The use of this ET has provided potential for agents of change in the health reality, as it has contemplated and stimulated their protagonism, as well as allowed the technological advancement of educational proposals as a tool in the development of knowledge regarding human rights and citizenship 39. These practices favor the patient's leading role in the care process and provide autonomy, physical and mental well-being and, consequently, a better understanding of this dimension of leprosy care.
Furthermore, considering the development of game-based ETs, the development of a board game for adolescents with leprosy is highlighted as a way of promoting self-care, preventing the disease, and reducing stigma 40. It is emphasized that the incidence of the disease in adolescents is harmful due to the physical damage caused by the delay in diagnosis, the lack of response to treatment, and the psychological damage caused by social isolation and stigma 41. Sometimes the social exclusion of people with leprosy is more damaging than the clinical manifestations of the disease 42-44.
Moreover, self-care strategies also include support groups. In one study, it was found that the promotion of self-care and the development of group activities were marked by the enthusiasm, availability, and interest of the facilitators and other participants 45. In this sense, a study conducted with a self-care group found that these members had a higher quality of life. The authors add that, despite being curable, leprosy is a public health problem that warrants careful attention for its control and elimination, as well as encouragement and educational interventions for self-care to avoid disabilities and physical deformities 46.
Therefore, the use of educational strategies for the creation of these groups is regarded as a technique for improving the quality of life of individuals and their influence on the health-related determinants present in the models of care for the prevention, control, and treatment of leprosy 47.
Thus, it should be noted that ETs for the prevention of leprosy disabilities are defined as expository resources, such as self-care manuals, educational leaflets, booklets, printed leaflets, ulcer dressing kits, videos, educational talks, training, and support groups 48-50.
The main limitation of this study was the low number of studies found on the theme, which reflects the limited production in the field of ETs used to promote self-care in leprosy. Another limitation was the challenge of the combined analysis of the studies due to the varying interventions and ETs adopted, which hindered conducting a meta-analysis.
Conclusion
This review allowed the contributions of ETs in promoting self-care in people affected by leprosy to be highlighted. It was found that, among the ETs, oral communication was used in all the interventions aimed at promoting self-care in leprosy, followed by printed resources such as educational manuals, self-care calendars, and self-care plans. It should be noted that audiovisual ETs, images, and videos were used, as well as mobile telecommunication devices.
Thus, they have shown that the use of ETs for self-care in people affected by leprosy was significant, as there was an increase in the frequency of self-care practices and treatment adherence, an improvement in physical disability before and after the intervention using ETs and an improvement in the frequency of self-care actions with the face, hands, and feet. This shows that the use of ETs is a strong method for improved results in the self-care process for people affected by leprosy.
The illness process caused by leprosy, although widely known in the scientific community, still entails research questions, such as adherence to self-care practices. In this context, the use of technologies, strategies, and resources that favor understanding and influence the care process can facilitate improvements in the quality of care.
