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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
| Search Strategy | Total | ||
|---|---|---|---|
| Databases/ websites | SciELO | (Leprosy OR Hansen Disease OR Hansen’s Disease) AND (Educational Technology OR Instructional Technology OR Technology, Educational OR Technology, Instructional) OR (Health Education OR Community Health Education OR Education, Community Health OR Education, Health OR Health Education, Community) AND (Self Care OR Self-Care). | 1 |
| Cochrane Library | “Leprosy” OR “Hansen Disease” OR “Hansen’s Disease” AND “Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional” OR “Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community” AND “Self Care” OR “Self-Care” in Title Abstract Keyword - (Word variations have been searched). | 89 | |
| Embase | (‘leprosy’/exp OR ‘leprosy’ OR ‘hansen disease’/exp OR ‘hansen disease’ OR ‘hansens disease’) AND (‘educational technology’/exp OR ‘educational technology’ OR ‘instructional technology’ OR ‘technology, educational’/exp OR ‘technology, educational’ OR ‘technology, instructional’ OR ‘health education’/exp OR ‘health education’ OR ‘community health educatio’ OR ‘education, community health’ OR ‘education, health’/exp OR ‘education, health’ OR ‘health education, community’) AND (‘self-care’/exp OR ‘self-care’ OR ‘self-care’/exp OR ‘self-care’). | 46 | |
| Lilacs | (“Leprosy” OR “Hansen Disease” OR “Hansen’s Disease”) AND (“Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional”) OR (“Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community”) AND (“Self Care” OR “Self-Care”). | 758 | |
| (“Hanseníase” OR “Lepra” OR “Doença de Hansen” OR “Hansenologia” OR “Reação Hansênica do Tipo Eritema Nodoso” OR “Reação Hansênica Reversa” OR “Reação Hansênica Tipo 1” OR “Reação Hansênica Tipo 2” OR “Reações Hansênicas”) AND (“Tecnologia Educacional” OR “Tecnologia Instrucional”) OR (“Educação em Saúde” OR “Educar para a Saúde” OR “Educação Sanitária” OR “Educação para a Saúde” OR “Educação para a Saúde Comunitária”) AND (“Autocuidado” OR “Autoajuda”). | 12 | ||
| PubMed | (“Leprosy”[Title/Abstract] OR “Hansen Disease”[Title/Abstract] OR “Hansen’s Disease”[Title/Abstract]) AND (“Educational Technology”[Title/Abstract] OR “Instructional Technology”[Title/ Abstract] OR “Technology, Educational”[Title/Abstract] OR “Technology, Instructional”[Title/Abstract]) OR (“Health Education”[Title/Abstract] OR “Community Health Education”[Title/ Abstract] OR “Education, Community Health”[Title/Abstract] OR “Education, Health”[Title/Abstract] OR “Health Education, Community”[Title/Abstract]) AND (“Self Care”[Title/Abstract] OR “Self-Care”[Title/Abstract] “Self-Care”). | 643 | |
| Databases/ websites | Scopus | ((“Leprosy” OR “Hansen Disease” OR “Hansen’s Disease”) AND (“Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional”) OR (“Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community”) AND (“Self Care” OR “Self-Care” )) | 96 |
| Web of Science | ((“Leprosy” OR “Hansen Disease” OR “Hansen’s Disease”) AND (“Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional”) OR (“Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community”) AND (“Self Care” OR “Self-Care”)). | 828 | |
| Gray literature | Capes Catalogue of Theses and Dissertations | “Hanseníase” AND “Tecnologia Educacional” OR “Educação em Saúde” AND “Autocuidado” | 8 |
| Opengrey | (“Leprosy” OR “Hansen Disease” OR “Hansen’s Disease”) AND (“Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional”) OR (“Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community”) AND (“Self Care” OR “Self-Care”). | 12 | |
| ProQuest | (“Leprosy” OR “Hansen Disease” OR “Hansen’s Disease”) AND (“Educational Technology” OR “Instructional Technology” OR “Technology, Educational” OR “Technology, Instructional”) OR (“Health Education” OR “Community Health Education” OR “Education, Community Health” OR “Education, Health” OR “Health Education, Community”) AND (“Self Care” OR “Self-Care”). | 0 | |
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.
Source: Prepared by the authors.
Figure 1 Search and selection process of articles through cross-referencing of terms via databases, search websites, and gray literature. Crato, Ceará, Brazil, 2023
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
| Code | Authors/Year (Country) | Database | Study Design | Objective | Sample | LE* |
|---|---|---|---|---|---|---|
| A1 | Rodini, Gonçalves, Barros, Mazzer, Elui, Fonseca/2010 18 (Brazil) | SciELO | Experimental study | To assess the physical and functional status of the eyes, hands, and feet of patients with leprosy, in relation to the onset and progression of sensory- motor deficiencies, the level of disability, and quality of life. | 26 | 1c |
| A2 | Brito/2018 19 (Brazil) | Capes Catalogue of Theses and Dissertations | Experimental study | To assess the effectiveness of an educational-behavioral intervention on adherence to self-care in individuals affected by leprosy, in the light of the Diffusion of Innovation Theory. | 19 | 1c |
| A3 | Barbosa/2021 20 (Brazil) | Capes Catalogue of Theses and Dissertations | Quasi- experimental study | To analyze the effect of the mHealth technology on the self-care of patients with leprosy. | 18 | 1c |
| A4 | Junior, Muniz, Xavier/2014 21 (Brazil) | Lilacs | Experimental study | To demonstrate the level of performance and satisfaction achieved by 20 patients with leprosy with claw-hand sequelae, before and after the use of adaptations when performing their feeding activities. | 20 | 1c |
| A5 | Paul, Kumar/2020 22 (India) | Embase | Quasi- experimental study | To present a case in which the use of mobile phones has led to improved care/ treatment. | 1 | 1c |
*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
| Code | ETs used | Intervention | Follow-up | Outcome |
|---|---|---|---|---|
| A1 | Oral guidance and printed educational manual on self- care | During the first appointment, an anamnesis was conducted, as well as a sensory-motor assessment and an assessment of deformities of the eyes, and upper and lower limbs; guidance was provided, and an educational manual was issued with guidelines on self- care for leprosy. | Follow-up six months after the first assessment and a second assessment 12 months after the first. | There was a significant improvement in corneal sensitivity and skin dryness in the lower limbs from 20 to 6 cases; improvement in muscle function in the upper limbs and to at least one degree in the lower limbs, and in function in the tibialis anterior and extensor hallucis longus muscles; and a statistically significant improvement in the domains related to pain and social aspects. |
| A2 | Oral guidance; printed self- care plan and printed self- care calendar | Interview with application of the APAHansen instrument; simplified neurological assessment; individual preparation of a self-care plan that was provided to patients along with the availability of a self-care kit. | The patients received follow-ups at one and two months after the first screening for reinforcement of self-care measures and a new delivery of the self-care kit and calendar. In the third month, the APAhansen and the interview were re- applied. | There was an increase and improvement in the rate of adherence to self-care in leprosy. The results describe the superiority of the educational-behavioral intervention in adherence to self-care, based on innovation attributes. |
| A3 | Oral guidance; mobile communication devices; images and videos | Initially, an in- person interview was conducted with a questionnaire to assess self-care of the face, hands, and feet, with questions related to eye, nose, hand, and foot care; subsequently, educational images and videos were sent via the WhatsApp® messaging app. | For seven weeks, photos and videos covering self-care in leprosy were sent via the app and, in the last week, a phone call was made to re-apply the questionnaire to assess self-care and educational measures. | The educational interventions using mHealth for self- care in people affected by leprosy were significant, as participants increased the frequency of self-care on the face, hands, and feet, which reflects the intervention’s effectiveness. |
| A4 | Oral guidance and assistive technology | The standardized Canadian Occupational Performance Measure (COPM) protocol was applied to analyze the patients’ self- perception of their performance in their feeding routine. | After 10 training sessions that lasted 45 minutes each, a re-assessment was conducted using the same protocol. | Occupational performance showed improvement indexes with increased levels of independence when performing activities of daily life, with favorable results achieved based on the analysis of the final data, which showed statistical significance regarding the use of the devices. |
| A5 | Oral guidance and mobile communication devices | The first stage consisted of an interview, a sensory screening, and the provision of a mobile communication device. | For six months, patients maintained contact with the professionals via the mobile device, which enabled them to provide guidance on treatment and self-care activities. Follow-up calls were made by the professionals at a time previously agreed with patients. | There was an improvement in treatment adherence and self-care practices. Mobile technology can be used for effective remote control, which leads to minimizing regular hospital appointments and related stigma. The use of mobile communication devices and free phone numbers has led to improved healthcare against leprosy. |
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.
Source: Prepared by the authors.
Figure 2 Assessment of the Risk of Bias of the Studies Included in the Systematic Review. Crato, Ceará, Brazil, 2023
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.
