FIGURE 1: Flowchart of scientific productions in databases
REVIEW ARTICLE
Construction and validation of educational materials for children with chronic disease: an integrative review
Cicero Ivan Alcantara CostaI; Sandra Teixeira de Araújo PachecoII; Gabriella SoeiroIII; Déborah Gomes AdameIV; Patricia Lima Pereira PeresV; Bárbara Bertolossi Marta de AraújoVI
I
Nurse. Student of the Graduate Program of the College of Nursing.
University of the State of Rio de Janeiro. Brazil. E-mail: ciceroivanac@hotmail.com
II
Nurse. PhD Adjunct Professor. University of the State of Rio de Janeiro.
Brazil. E-mail: stapacheco@yahoo.com.br
III
Nurse. Student of the Graduate Program of the College of Nursing.
University of the State of Rio de Janeiro. Brazil. E-mail:
gabriellasoeiro@yahoo.com.br
IV
Nurse. Student of the Graduate Program of the College of Nursing.
University of the State of Rio de Janeiro. Brazil. E-mail: deborahgadame@yahoo.com.br
V
Nurse. PhD Adjunct Professor. University of the State of Rio de Janeiro.
Brazil. E-mail: patricia.uerj@hotmail.com
VI
Nurse. PhD Adjunct Professor. University of the State of Rio de Janeiro.
Brazil. E-mail: betabertolossi@gmail.com
DOI: http://dx.doi.org/10.12957/reuerj.2018.34208
ABSTRACT
Objective: to analyze the scientific production addressing the construction and validation of educational materials for children with chronic diseases and their families. Method: this integrative review was carried out in the Latin American and Caribbean Literature in Health Sciences, Nursing Database (BDENF), Medical Literature Analysis and Retrieval System Online (MEDLINE) databases, and in the CAPES periodicals portal, from January to April 2017 and November 2018, for the period from 2010 to 2017. Results: of the 74 selected publications, 11 were included in the study. The publications found that educational materials yielded improved treatment adherence and child care and increased care safety. Conclusion: considering the small scientific production identified, this review is expected to contribute to constructing and validating new technologies with effects on the promotion of health education for these children and their families.
Descriptors: Child; health education; teaching materials; educational technology.
INTRODUCTION
With respect to disease and health, it can be said that there is an abyss that separates caregivers from care recipients and their relatives. These two groups represent two different universes. Languages, signs, meanings and experiences represent barriers that hinder the efficiency of treatments to recover health, and specially the health of patients with chronic diseases.
In public health services, the use of educational materials is an integral part of the care model. Instructional manuals, booklets and handouts are decisive when the expected outcome is to promote greater understanding of content and changes in thinking (or behavior) and care practices, as they allow for greater interaction and exchange of experience between the stakeholders1.
Thus, authors point out that health education is a constant practice in the daily routine of nurses. It is, therefore, necessary to encourage and adapt educational and creative practices in order to include patients and their families in the construction of educational materials directed to their real needs2.
The use of these educational technologies allows access to other intelligences and abilities because they use not only written language, but also images, music, signs, symbols and games, being produced according to the target population group, resulting in greater identification between users and health professionals.
The creation of manuals facilitates the work of the multidisciplinary team in the guidance of patients and families during the process of treatment, recovery and self-care. The existence of educational and instructive material facilitates and standardizes the guidelines to be carried out, with a view to health care3.
Children with some type of chronic or incapacitating illness are considered Children With Special Health Care Needs (CSHCN) as they require special care whether technological care, medication, or modified usual care 4.
In Brazil, hospital discharge practices of these children are marked by preparation of mothers based on a prediction of hospital discharge so that they be able to continue to provide care for their children at home; thus, the family is excluded from this process. However, there is no standardization of this guidance in the institutions and this influences its potential of resolution, because these mothers are excited due to the discharge, and they assume for the responsibility of providing a set of care measures that they will be often unprepared to perform at home, limiting their autonomy and maintaining a lasting bond with the institution 5.
However, the daily life of these families is marked by efforts and difficulties that go beyond the clinical fragility presented by the child, pointing out to the social vulnerability in which they are inserted, such as low income and difficulties to access health services, taking into account that the health care network for these children is considered fragile and fragmented6.
In this perspective, educational materials appear as an important tool in the health education of these children and their families, because when in home, they demand continuous care of a complex nature, constituting challenges for their family caregivers.
In this sense, health education represents an important intervention strategy whose premises point to the knowledge of family caregivers, the target of educational action, and their learning demands for the home care of these children4.
To that end, the health team must be instrumented, sensitized and mobilized to pay special attention to these children and their families, in order to lead them to autonomy in care through a dialogical and transformative health education7.
Thus, this study aimed to analyze the scientific production about the construction and validation of educational materials in health education of children with chronic diseases and their families.
METHODOLOGY
This is an integrative review, a survey method that aims to synthesize the results of research on a certain theme.
In order to carry out the review, the following steps were taken: establishment of the objective of the integrative review and choice of the research question; establishment of criteria for selection of studies; definition of the information to be extracted from the selected articles; analysis and interpretation of results8.
The question that guided the research was: What educational materials have been constructed and validated for the health education of children with chronic diseases and their families?
The inclusion criteria were: original research carried out by nurses or other health professionals, published from 2010 to 2017 with texts available in full length, in Portuguese, English or Spanish, available online and free of charge, covering the construction and/or validation of educational materials focusing on the health education of children with chronic diseases and their families.
The exclusion criteria were: theoretical studies, literature review articles, reflections, book chapters, and scientific production that did not contemplate the theme or did not answer the research question.
The scientific production came from the following databases: Latin American and Caribbean Literature in Health Sciences (LILACS), Nursing Database (BDENF), Online Medical Literature Search and Analysis System (MEDLINE/PUBMED) and Portal of Periodicals of the Coordination of Improvement of Higher Education Personnel (CAPES). The survey of these data occurred in the months of January, February, March, April 2017 and November 2018.
Thus, the scientific production was selected as follows: First there was a pre-selection of publications that approached the research topic, through the reading of the titles. In this stage, there were a total of 74 productions. Then the abstracts were read, and 17 works were eliminated. After this step, it was observed that 16 of the publications were repeated in the databases; thus, 41 studies remained. After reading the works in their entirety, 30 were discarded for not having adhered to the theme of the research, leaving only 119-19 publications that were incorporated into this study, according to Figure 1.
FIGURE 1:
Flowchart of scientific productions in databases
In order to catalog the scientific production and later analyze it, a data collection instrument created by the authors was adopted, including the following items: title, authors, journal, place of the study, objectives, methodology, results and final considerations.
RESULTS AND DISCUSSION
Among the 11 articles analyzed, the majority of them, 6 (54.5%), came from Brazil, 3 (27.3%) from the United States of America, 1 (9.1%) from Canada, and 1 (9.1 %) from Germany.
As for the years of publication of the studies, 3 (27.2%) were published in 2012, 2 (18.2%) in 2013 and 2016, and 1 (9.1%) in each of the following years: 2017, 2015, 2014 and 2010.
Among the journals that stood out in publication of articles, they were: Elsevier; CoDAS; Changes - Health Psychology; Rev. Gaúcha Enfermagem; Acta Paul. Enferm. J. Health Inform; Nurs. Clin. North Am.; AMIA Annu Symp.; Pediatr. Blood Cancer and Can. Respir J.
As to the authorship of the texts, four were produced by nurses, four by physicians, one in partnership with a speech therapist and a dentist, one by psychologists, and one by information technology professionals. Of the national publications, three were carried out in the state of São Paulo, one in Rio Grande do Sul, one in Pará, and one in Ceará.
As for the study scenarios, six were performed in outpatient clinics, three in wards, one in the emergency room, and one in primary schools. However, the majority stands out for the focus on home care, addressed in nine of the 11 studies.
The educational materials constructed for the health education of children with chronic diseases and their families were: computer program (1), booklet (1) multimedia material (1), manual (1), children stories, (3) application (1), CD ROOM (1), set of illustrations (1), and play games (1), as shown in Figure 2.
FIGURE 2: Scientific production on the construction and/or validation of educational materials in health education for children with chronic diseases and their families from 2010 to 2017.
In the analysis of the articles included in this review, it was possible to identify that they were directly related to the construction and/or validation of educational materials aimed at children with chronic diseases and their families, approaching self-care with support for family members to provide the necessary care. The studies were concentrated in the following chronic diseases: Asthma (5), Lupus (1), Cancer (1), Hemophilia (1), Cystic Fibrosis (1), Cleft palate (1), and HIV/AIDS (1).
All the texts pointed out to the importance of educational materials for health education of children with chronic diseases and their relatives. They also emphasized that by producing these educational technologies in a simple, clear and objective way, they promoted a greater adherence of the patients and their relatives to the treatment9-19.
In one of the articles, the authors developed a software called ModuS in Germany to support the families of children with chronic diseases, especially asthma. This technology made possible the self-management of asthma by family members, as well as served as a platform to address other chronic diseases9.
In this sense, the use of computer science has been growing in the context of health. Different professional categories use it both in academic training through distance education, and also develop educational activities in social networks such as Facebook or through applications 20.
Like the Modus software, an educational booklet for family members of children with asthma was constructed and validated for use in the practice of health education for this clientele which needs to provide a differentiated care such as early identification of warn signs and measures of prevention of aggravation10.
Thus, carrying out the educational practice through a validated booklet directed to specific groups becomes essential to evaluate results obtained in different realities, considering the same approach. This strategy seeks to show the repercussion of this intervention, whose purpose is to improve the care provided to this population21.
The authors of a multimedia Power point material, called the Keeping Eyes on Language, prepared to guide caregivers of children with cleft lip and palate, found that the construction of this educational material contributed to the knowledge of these caregivers. There was an increase in correct responses by some of them with respect to the role of the velopharynx and the importance of primary palatoplasty in speech 11.
Many scholars have defended the use of multimedia or audiovisual material because it is a strategy that facilitates the learning process, promoting that individuals become more participatory and involved in health education activities22.
Another study developed by psychologists aimed to describe the development of a manual with guidelines for children with lupus. The study found that the construction of the educational material was well accepted by rheumatologists, children with lupus and their families who shared in the study12.
Manuals are a type of instrument that enables the organization and standardization of guidelines for a particular service or procedure. They are widely used in health institutions because they stimulate the dissemination and fixation of knowledge, and are at the reach of all 23.
Thus, educational materials that are easy to see and use, such as manuals and booklets, are fundamental to support family caregivers of children with chronic diseases, especially in home care, where there are no health professionals to provide support. It is therefore necessary that the health team, especially the nursing team, become aware of this importance and use these materials in their care in outpatient clinics or even in the hospitalization units in their guidelines for hospital discharge.
In the process of constructing and validating an educational game for children with hemophilia, it was found that they learned more about the disease with the game. This tool also made it possible for family members and their friends to understand the subject and the care to be given to the children13.
The use of new educational technologies has increased in the last years and, they have been gradually introduced in the health field. The use of educational games about children's health encourages participation and interaction among players, favoring the development of the teaching-learning process24.
Thus, children represent a great challenge for health professionals to implement educational practices because it is necessary to adopt strategies and materials that capture their interest, stimulate the participation and acquisition of knowledge, leading to the adoption of healthy behaviors, at the same time that are adequate to the cognitive capacity and development phase25.
In the studies produced by nurses, the focus was on the construction of stories to approach children with AIDS, asthma and cystic fibrosis, aiming to approach disease and self-care14,15,18.
Thus, a story built with information about the health-disease process and treatment for children with AIDS has become a valuable tool for dealing with these children. Besides promoting an exercise of actions in health education, it enabled the understanding of health status, adherence and participation in the treatment, and encouraged the interaction with other children living in similar situations, but without the need to reveal the diagnosis14.
In the United States, specialists in developing an interactive story to work on self-control of asthma symptoms among children aged 8 to 11 years found that this resource is an excellent tool to work the self-care of these children15.
In order to soften the communication of the diagnosis of cystic fibrosis to children and to demystify the disease as a monster of the children's imagination, a story book was constructed and it was verified that this educational material made the children to feel strong and face the illness 18.
Scholars pointed out that the use of stories in the education of children is a fundamental practice. They transmit knowledge and values, and act decisively in the development of the teaching-learning process, because the child's imagination is wide and sublime, allowing a direct correlation of history with reality26.
As for the studies carried out by medical professionals, there was a variety, addressing different health education instruments such as an application, illustrations, and a CD-ROM.
In a study also in the United States, the authors created an application to involve asthmatic children and their relatives in self-control of the symptoms of the disease. The new tool made it possible to move the treatment of asthma from the field of acute care to a preventive and proactive approach, where the treatment could be adapted to the individual standards of each patient, thus generating a better control and avoiding acute attacks. In the process of creating the application, several problems were identified in its use, requiring changes to ensure the acceptability and applicability of the content16.
Applications are a type of technology that gathers visual and auditory resources capable of stimulating the individuals with the aid of attractive and extremely friendly and intuitive interfaces. They should be used in health education because they increase the efficiency of both the communication of health professionals and the receptivity of patients due to the easy access from anywhere27.
Asthma was also a theme of interest to other researchers, who tried to test and validate a set of illustrations about asthma along with asthmatic children and their families in an emergency unit of a pediatric hospital in Canada, with the intention of promoting self-care in this clientele and help parents in the detection and control of different types of symptoms of this clinical condition. They pointed out that 7 (46.6%) among 15 illustrations needed modifications to meet accuracy and clarity goals 17.
However, the use of illustrations in health education practices is traditional. Several health sectors, especially primary health care, use these materials in its activities. In relation to children, this educational technology stimulates interest, helping to understand the message transmitted through non-verbal language present in the illustrations, favoring the learning28.
Another study aimed at creating an interactive CD-ROM for health education of adolescents with cancer and evaluating its efficacy in the United States. The study compared this technology with traditional manuals. A set of 65 adolescents was divided into two groups; 35 received the CD-ROM and 30 the traditional manual. They were observed during a certain time. In the end, it was found that CD-ROM users scored higher on the Wallston Multidimensional Health Control Scale than those who used the manual, supporting the theories that knowledge and support give to the adolescents a sense of control in their lives19.
However, the CD-ROM is now an outdated technology since most computers do not have more drivers for this type of media. Furthermore, a recent study using this material as a strategy to sensitize mothers about breastfeeding was ineffective, pointing out no benefit to the intended public 29.
One of the challenges of health science is to bring scientific information to people's daily lives. However, the advancement of educational technologies is an opportunity for changing educational achievement towards a perspective offering multiple paths, making it possible to overcome these barriers. Thus, the dissemination of knowledge can make the populations aware of health promotion and disease prevention practices and consequently can make their lives healthier30.
CONCLUSION
The scientific production found on the theme of this review was little. The studies pointed out a consensus about the importance of educational materials for a better adherence of both children with chronic diseases and their families to the proposed treatment, besides guaranteeing greater safety to family members during the provision of care for children.
The participants in the process of construction of these materials were professionals, children with chronic diseases related in each study and their relatives.
The publications of nurses were limited to the construction of stories and booklet. They addressed children with HIV/AIDS, cystic fibrosis and asthma and their families. The other professionals produced the other materials.
The results of this study allow the reader to reflect on the need to broaden the view of nurses on the construction of educational materials aimed at the health education of children with chronic diseases. It is necessary to expand the horizons for further educational technologies, in order to guarantee a better quality of life for those clients who need continuous care.
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