Introduction
Fibromyalgia is a chronic condition of unknown cause characterized by generalized bodily pain, fatigue, sleep disturbances, impaired cognition and anxiety (Wolfe et al., Reference Wolfe, Clauw, Fitzcharles, Goldenberg, Katz, Mease, Russell, Russell, Winfield and Yunus2010; Mascarenhas et al., Reference Mascarenhas, Souza, Oliveira, Lacerda, Mendonça, Henschke and Oliveira2021). Its prevalence ranges from 0.2% to 6.6% in the general population (Marques et al., Reference Marques, Santo, Berssaneti, Matsutani and Yuan2017), and the condition causes disability with high direct costs (e.g. drug therapy and health care costs) and indirect costs (e.g. lost productivity) (Lacasse et al., Reference Lacasse, Bourgault and Choinière2016). Diagnostic criteria for fibromyalgia have changed in recent years (Wolfe et al., Reference Wolfe, Clauw, Fitzcharles, Goldenberg, Häuser, Katz, Mease, Russell, Russell and Winfield2011).
There are several therapies available for fibromyalgia (Mascarenhas et al., Reference Mascarenhas, Souza, Oliveira, Lacerda, Mendonça, Henschke and Oliveira2021). In this regard, the fibromyalgia treatment guidelines of the European League Against Rheumatism (Macfarlane et al., Reference Macfarlane, Kronisch, Dean, Atzeni, Häuser, Flub, Choy, Kosek, Amris, Branco, Dincer, Leino-Arjas, Longle, McCarthy, Makri, Perrot, Sarzi-Puttini, Taylor and Jones2017) recommend that non-pharmacological therapies based on exercise and patient education be tried first after the diagnosis of fibromyalgia. Although drug treatments appear to be effective, the evidence supporting the use of this type of treatment is relatively weak (Antunes and Marques, Reference Antunes and Marques2022a; Yin et al., Reference Yin, Peng and Ro2022).
Health education is one of the main items to enable the promotion of health in Primary Health Care in Brazil. It should prepare people to take control and responsibility for their own health and the health of their territory, as well as prepare them for empowerment, decision-making, participation, social control, and acting on the conditioning and determining agents of their health and quality of life (García-Ríos et al., Reference García-Ríos, Navarro-Ledesma, Tapia-Haro, Toledano-Moreno, Casas-Barragán, Correa-Rodríguez and Aguilar-Ferrándiz2019; Antunes et al., Reference Antunes, Couto, Bertolini, Loures, Schmitt and Marques2021b). The development of materials for health education is shown to be an efficient strategy for patients. Such an instrument encourages and stimulates the promotion of self-care. The e-book is a type of educational material, considered practical, of quick access, and that has digital resources that allow, for example, to increase the font size, make annotations, underline the text, and go to secondary sources with just a touch (Reberte et al., Reference Reberte, Hoga and Gomes2012; Guaraná et al., Reference Guaraná, Tabosa, Dias and Duque2020).
Initially, for the elaboration of an e-book for health education, it is necessary to identify the real educational needs, since the material content of the e-book will be directly aligned with these needs, while the vocabulary must be consistent with the central message of this instrument. Good material is expected to have a planning of the central idea, with a correct, easy, understandable, and motivating message for the reader (Reberte et al., Reference Reberte, Hoga and Gomes2012; Guaraná et al., Reference Guaraná, Tabosa, Dias and Duque2020). Thus, the validation of the e-book becomes a fundamental requirement to determine whether this instrument is suitable for distribution among individuals with fibromyalgia within the scope of primary health care. Therefore, the objective of this study was to develop and validate an e-book to promote the health of individuals with fibromyalgia.
Methods
This is a methodological research (Polit and Beck, Reference Polit and Beck2006). This type of study aims to elaborate, evaluate, and validate the technologies developed, in order to ensure their reliability for use in educational and care environments (Lobiondo-Wood and Haber, Reference Lobiondo-Wood and Haber2011). The guidelines for the construction and validation of guidance materials for health care proposed by Echer (Echer, Reference Echer2005) were used.
In the first phase, through a literature review, the main publications available on multidisciplinary health promotion strategies for individuals with fibromyalgia were analyzed. The material intends to encourage the promotion of health and self-care in individuals with fibromyalgia, as well as helping them understand all aspects related to the syndrome. In its elaboration, it is essential to identify the reality of individuals, so that it has one of their needs and not just compliance with therapeutic requirements (Gozzo et al., Reference Gozzo, Lopes, Prado, Cruz and Almeida2012).
So, in this part of the study, the synthesis of knowledge acquired during the literature review was used to build the theoretical knowledge to be addressed, as well as the discourse of health professionals and individuals with fibromyalgia collected in previous studies by the research group. Only then, with the help of a graphic designer, the art was created, through the making of figures and formatting, confirmation, and layout of the pages. In the preparation of the e-book, the aspects of language, illustration, and layout that the health professional should consider in the elaboration of educational materials, as proposed by Moreira, Nóbrega, and Silva (Moreira et al., Reference Moreira, Nóbrega and Silva2003) were taken into account in order to make them readable, understandable, effective and culturally relevant.
As the validity and reliability of the instruments are demonstrated, their quality is attested, the possibility of random errors is removed, and the credibility of their usability in practice is increased (Echer, Reference Echer2005; Polit and Beck, Reference Polit and Beck2006; Lobiondo-Wood and Haber, Reference Lobiondo-Wood and Haber2011). Then, the Delphi technique was used, which uses a questionnaire that can be repeated over and over until a convergence of the judges’ answers is reached. A consensus, that is, which represents the consolidation of the group’s intuitive judgment (Polit and Beck, Reference Polit and Beck2006).
Regarding consultation with specialists in the area of interest, a sample calculation was performed to determine the number of judges obtained through the formula n = Za2.P(1-P)/e2. The stipulated values were Za (confidence level) = 95%, P (ratio of agreement of the judges) = 85%, and (accepted difference from what is expected) = 15% (Lopes MVO et al., Reference Lopes, Silva and Araújo2012; Galindo Neto et al., Reference Galindo Neto, Caetano, Barros, Silva and Vasconcelos2017), which resulted in 22 judges. However, Vianna (Vianna, Reference Vianna1982) emphasizes the importance of having an odd number of specialists, in order to avoid a tie in opinions. After a systematic search described below, the sample of judges consisted of 23 participants by category group. We considered it coherent to divide the judges into three distinct categories: content judges (researchers/professors in the area of rheumatology, education and health promotion and educational technologies and/or validation of instruments); technical judges (professionals with experience in rheumatology, education, and health promotion); and judges with professional experience in design (Melo et al., Reference Melo, Moreira, Fontenele, Aguiar, Joventino and Carvalho2011).
The choice of judges in the area of interest was initially carried out by consulting the Lattes Platform of the National Council for Scientific and Technological Development (CNPq) (www.buscatextual.cnpq.br). The selection took place as follows: after accessing the website “Plataforma Lattes”, in the “Curriculum Lattes” window, the option “Search curriculum” was selected. In the advanced search tab, by subject, the following keywords were used: “Fibromyalgia” and “Health Promotion”. Preferably, doctors were chosen, rather than other researchers, with the understanding that professionals with more years of study and experience have a higher level of excellence. In addition, snowball sampling was also used (Costa, Reference Costa2018). This technique is based on convenience sampling, widely used when the population is composed of individuals with characteristics that are difficult to find. In this case, an individual who meets the study participation criteria will be asked to nominate other participants (Polit and Beck, Reference Polit and Beck2006).
In order to ensure an adequate assessment of the submitted content, it is essential that the judges be experts in the area of interest, which means that they must adopt a posture of valuing both their professional experience and the scientific knowledge acquired (Fehring, Reference Fehring, Carroll-Johnson and Paquette1994; Jasper, Reference Jasper1994; Joventino, Reference Joventino2010). That being the case, and seeking to establish parameters for the selection of participants in this part of the study, a system for the classification of judges adapted from Joventino (Joventino, Reference Joventino2010) proposal was adopted, with the selection of those who reach a minimum score of five points.
The choice of technical judges was also carried out by snowball sampling (Costa, Reference Costa2018). In the same way, these judges were chosen according to the adaptation made in the proposal by Joventino (Joventino, Reference Joventino2010). Lastly, design professionals with a degree in graphic technology design with at least 1 year of experience were invited. The selection of this group was also carried out under the snowball sampling criteria (Costa, Reference Costa2018).
After the considerations of the three groups of experts, the necessary adjustments were made to the material, in order to proceed with the validation of the e-book by the target audience. This moment is special, because it was possible to identify what was not understood, what needs to be added, or even improved, in order to reduce the distance between what will be exposed and what will be learned (Echer, Reference Echer2005). It is recommended that the portion of the target population that evaluates the e-book be 30 to 40 individuals (Beaton et al., Reference Beaton, Bombardier, Guillemin and Ferraz2007). In that study, 45 individuals with fibromyalgia (importance of the odd number) with a medical diagnosis of fibromyalgia were evaluated through e-mail.
The inclusion criteria considered were: individuals of both sexes, aged 18 years or over and with a medical diagnosis of fibromyalgia, confirmed by the International Statistical Classification of Diseases and Related Health Problems (ICD-10) (DataSus, 2020), with code M79.7, and confirmed by an evaluator according to the ACR Classification Criteria, revised 2016 version (Wolfe et al., Reference Wolfe, Clauw, Fitzcharles, Goldenberg, Häuser, Katz, Mease, Russell, Russell and Walitt2016). Exclusion criteria were individuals undergoing physical therapy treatment or treated in the last three months; diagnosis of other conditions causing chronic pain (neuropathies, rheumatoid arthritis, osteoarthritis, spinal stenosis, or neoplasia); medically proven severe mental disorders (schizophrenia, psychosis, bipolar affective disorder, severe depression); visual or hearing impairment. All these criteria were considered self-reported by the participants. Individuals with fibromyalgia were invited to participate in the study through the Brazilian Association of Fibromyalgia Patients (ABRAFIBRO).
Considering that each group of participants had a specific focus on their evaluation, three instruments were used: the first, aimed at content and technical judges; the second, aimed at design judges, and the third, aimed at the target audience.
The Electronic Questionnaire for Content Assessment and Electronic Questionnaire for Technical Assessment sent to the content and technical judges was the Suitability Assessment of Materials (SAM), specific and widely used to assess the difficulty and convenience of educational materials. This instrument uses the standard Likert scale (0 = inadequate, 1 = partially adequate, 2 = adequate), in which there is a checklist for checking attributes related to content, writing style, graphic illustration, presentation, motivation, and cultural adequacy. For the e-book to be considered adequate, the result of the percentage calculation of scores obtained should be equal to or greater than 60% (Doak et al., Reference Doak, Doak and Root1996; Moura et al., Reference Moura, Silva, Rocha, Lima, Moreira and Silva2017).
The Electronic Design Assessment Questionnaire aimed at design judges was built from the adaptation proposed by Souza (Souza, Reference Souza2015). The first part of the instrument presents the evaluator’s identification; later, questions about the characteristics of the illustrations and, finally, a field for observations. In the valuation of the answers, the standard Likert scale was used, defined as follows: 1 = totally disagree, 2 = disagree, 3 = agree, 4 = totally agree. In this instrument, for validation of the instrument, a value greater than 0.78 is desirable (Borges et al., Reference Borges, Moreira, Rodrigues, Souza and Silva2013; Moura et al., Reference Moura, Silva, Rocha, Lima, Moreira and Silva2017).
Finally, the Electronic Assessment Questionnaire for the Target Audience for individuals with fibromyalgia was applied, built from Galdino (Galdino et al., Reference Galdino, Moreira, Marques and Silva2019), which presents subdivision items. The first part is composed of information on socio-economic profile; in the second part, it presents items regarding the domains of organization, writing style, appearance, and motivation, where a minimum agreement of 75% is required for positive responses and, in the third part, an open space is available for participants to express their personal opinions (Bispo et al., Reference Bispo, Pedrosa, Wanderley and Corrêa2012; Moura et al., Reference Moura, Silva, Rocha, Lima, Moreira and Silva2017).
After surveying all the suggestions made by specialists and individuals with fibromyalgia, the e-book was adapted in order to meet the needs and expectations of the population. Subsequently, the material was sent for Portuguese language proofreading (Echer, Reference Echer2005).
Regarding the interpretation and analysis of the data, the professional information about the judges, as well as the socio-demographic and clinical data of the individuals with fibromyalgia, were organized in the Excel software 8.0, and the descriptive analysis was performed. As for the content validation of the e-book by the content and technical judges, the percentage of scores obtained was calculated through the total sum of the marked values divided by the total scores contained in the instrument. For the e-book to be considered adequate, the calculation result must be equal to or greater than 60% (Doak et al., Reference Doak, Doak and Root1996).
In the validation of the e-book by expert design judges, the Content Validity Index (CVI) recommended by Waltz and Bausell (Waltz and Bausell, Reference Waltz and Bausell1981) was used, which has been widely applied in this type of study. This method measures the degree of agreement of the experts in relation to aspects of the material; to do so, you must divide the number of answers marked with the values “3” and “4” (strongly agree and agree) by the total number of questions (Alexandre and Coluci, Reference Alexandre and Coluci2011). According to Lynn’s (Lynn, Reference Lynn1986) recommendations, the cutoff point used for the CVI was 0.78, both for each item answered and for the questionnaire as a whole. The analysis of the questionnaire applied to the target audience (individuals with fibromyalgia) was carried out in accordance with the recommendations of Teles (Teles, Reference Teles2011), where it is essential that there be a minimum level of agreement of 75% in positive responses.
For the evaluation to be considered of good quality, it is necessary to present two basic conditions: reliability (measurement of consistency between evaluators) and agreement (degree to which two or more evaluators provide the same classification) (Matos, Reference Matos2014). Thus, the reliability of the instruments measured in scale was analyzed using Cronbach’s Alpha (αC), which provides a reasonable measure of reliability in a single test. In this way, repetitions or parallel applications of a test are not necessary to estimate its consistency. This test is presented on a scale ranging from 0 to 1; in this case, values above 0.8 are accepted (Field, Reference Field2009).
As for the agreement among judges, the CVI that measures the proportion of the judges in agreement on a certain aspect evaluated was used. This method uses the Likert scale with scores from one to four. The index is calculated through the sum of agreement of items marked as positive responses, divided by the total responses (Alexandre and Coluci, Reference Alexandre and Coluci2011). In this sense, the CVI was calculated for each of the items listed in the blocks and for the total set of instrument items (sum of all CVI calculated separately, divided by the number of items), according to the recommendations of Lynn (Lynn, Reference Lynn1986), using the cutoff point of 0.78 (78%) for both calculations. All these data were calculated using the statistical program Statistical Package for the Social Sciences (SPSS), version 22.0, serial no. 10101151049.
After surveying all the suggestions made by specialists and individuals with fibromyalgia, the e-book was adapted in order to meet the needs and expectations of the population. Subsequently, the material was sent for Portuguese language proofreading (Faria et al., Reference Faria, Horta, Reis, Soares and Moreira2022). After analyzing the data, it was found that no more than one round of agreement would be necessary for all groups as proposed by the Delphi methodology, since in the first round, all groups reached a CVI above 0.78 and a αC above 0.8 in the global sum of the instruments (Joventino, Reference Joventino2010), thus being within acceptable values. The study was approved by the Research Ethics Committee of the Faculty of Medicine of the University of São Paulo, obtaining approval under number 3.197.778.
Results
The final version of the e-book is comprised of 90 pages with the title “Amigos de Fibro: Promovendo a Saúde na Fibromialgia”. The e-book was created using the Canva software, a graphic design platform that allows users to create different types of visual content. In addition, it features graphic illustrations taken from Envato Elements, a subscription platform for graphic design items.
The material was divided into 10 blocks with the following themes: getting to know fibromyalgia (chapter 1); health promotion and care (chapter 2); family and work (chapter 3); body practices and physical activities (chapter 4); healthy and adequate nutrition (chapter 5); health and well-being (chapter 6); pharmacological approach (chapter 7); integrative and complementary practices (chapter 8); occupational performance (chapter 9) and sleep quality (chapter 10).
The educational content refers to self-care measures that promote the health and quality of life of individuals with fibromyalgia. In order to enrich the content, improve readability and general reader captivation of the e-book, and offer the target audience the opportunity to delve deeper into the topic, references and links were added at the end of the material, which gives access to the entirety of articles, books, theses, and websites that also support the theoretical framework of this material. The final version of e-book is available at: http://www.amigosdefibro.com.br.
Regarding the content judges, the majority were female (56.5%), aged between 31 and 40 years (39.2%), married or living with a partner (53%), white race/color (82 .7%), with teaching experience (100%), graduated between 11 and 20 years (39.2%), with an academic doctorate as their highest degree (39.2%) and all (100%) were teaching and with practical experience in the area of interest between 1 and 10 years (47.8%). Regarding their professions, 17.4% were physiotherapists, 13% rheumatologists, and the other professions had 8.7% (nurse, psychologist, nutritionist, occupational therapist, speech therapist, pharmacist, naturologist, and social worker).
As for the technical judges, the majority were female (65.2%), aged between 20 and 40 years (69.8%), married or living with a partner (65.2%), white race/color (69 .6%), with specialization in the area of interest (82.6%), recent practice in the area of interest (87%), as well as 69.6% participated in a course or training in the area of interest in the last 5 years, presented work in the area of interest in scientific events in the last 5 years, as well as having teaching experience in the area of interest.
The majority of the design judges were male (65.2%), aged between 20 and 30 years (52.2%), single (60.9%), white race/color (69.6%), with training time of 1 to 5 years (87%) and worked as designers in a publishers and advertising agencies (78.2%). Finally, most of the target audience judges were female (91%), aged between 31 and 40 years (38%), married or living with a partner (65%), white race/color (53%), with incomplete higher education (49%), monthly income of 1 to 2 minimum wages (60%), consider their health poor (49%) and use three or more medications a day (67%).
Regarding the process of judging the items that make up the e-book by the content judges, none of them was evaluated as totally inadequate. As shown in Table 1, the majority (61.1%) obtained a considerable minimum agreement index by the CVI. However, in the global assessment by the content judges, the CVI of the e-book presented a considerable minimum (0.79) and also an acceptable αC (0.960).
Content specialists’ assessment of content, language, graphic illustrations, presentation, stimulus/motivation, and cultural adequacy of the e-book
Caption: CVI = content validity index.
As for the process of judging the items that make up the e-book by the technical judges, none of them was evaluated as totally inadequate. As shown in Table 2, all items (100%) had a considerable minimum agreement rate by the CVI. In the global evaluation by the technical judges, the e-book obtained a CVI of 0.89 and also an acceptable αC (0.963).
Evaluation of technical experts regarding the content, language, graphic illustrations, presentation, stimulus/motivation, and cultural adequacy of the e-book
Caption: CVI = content validity index.
Regarding the process of judging the items that make up the e-book by the design judges, none of them were evaluated with “totally disagree”. As shown in Table 3, all (100%) had an agreement index greater than the cutoff score considered acceptable. In the global evaluation by the design judges, the e-book had a CVI of 0.92 and an acceptable αC (0.977).
Evaluation of specialists in the area of design, regarding the characterization of the graphic illustrations of the e-book
Caption: CVI = content validity index.
In the judgment process of the items that compose the e-book by the target audience judges, none of them was evaluated as totally inadequate. As shown in Table 4, of the total number of items evaluated, 46% had only positive responses, 31% had negative responses, and 23% had impartial responses. However, in the global evaluation by the target audience judges, the e-book obtained a CVI of 0.97 and an acceptable αC (1.08), within acceptable values.
Assessment by the target audience, regarding the organization, writing style, appearance, and motivation of the booklet
Caption: CVI = content validity index.
Discussion
Through this study, an educational e-book was developed and validated in order to promote self-care to improve the health of individuals with fibromyalgia. Educational materials, when prepared by experts in the field and through scientific bases, contribute to a better understanding of conditions and their treatments, being attractive and useful to the intended audience (Faria et al., Reference Faria, Horta, Reis, Soares and Moreira2022).
Communication in health is considered the employment of methods to inform, plan, influence, and even to execute decisions that usher health improvement, making it an essential tool in health promotion because it has the capacity to promote knowledge, bring solutions to health issues, as well as induce new perceptions and transform attitudes (Silva et al., Reference Silva, Feldmam, Lima, Nobre and Domingues2006; Guaraná et al., Reference Guaraná, Tabosa, Dias and Duque2020). This is what is sought in the treatment of fibromyalgia and is recommended according to international guidelines for its management (Macfarlane et al., Reference Macfarlane, Kronisch, Dean, Atzeni, Häuser, Flub, Choy, Kosek, Amris, Branco, Dincer, Leino-Arjas, Longle, McCarthy, Makri, Perrot, Sarzi-Puttini, Taylor and Jones2017).
Patient education is a key component in managing fibromyalgia, as with other chronic conditions. An open presentation and discussion between patients and care providers is essential. Involving the patient in reviewing care options and participating in the development of a plan with the greatest likelihood of being followed are also goals pursued in the management of fibromyalgia (Chokshi, Reference Chokshi2022).
From this perspective, health professionals must be able to identify health needs and intervene efficiently to improve the quality of life of these individuals. In this sense, attention should be paid to changes in care paradigms, to interventions in the health promotion model, to the strategies of educational actions required in care, in which all participants in the action are invited to get involved at the starting point in the establishment of goals for self-care. So, care through health education is capable of promoting empowerment for individuals with fibromyalgia (Miranda et al., Reference Miranda, Berardinelli, Sabóia, Brito and Santos2016).
Empowerment is an educational process designed to help patients develop the knowledge, skills, attitudes, and self-knowledge necessary to effectively assume responsibility for decisions about their health (Feste and Anderson, Reference Feste and Anderson1995). Patients who are more informed, involved, and accountable (empowered) interact more effectively with health professionals trying to carry out actions that produce health results (Wagner, Reference Wagner1998; Taddeo et al., Reference Taddeo, Gomes, Caprara, Gomes, Oliveira and Moreira2012).
Most experts agree that an educational treatment component is helpful, if not necessary, in treating fibromyalgia. These educational programs aim to increase understanding of the complex nature of interactions between neurobiological processes, behaviors such as sleep or activity levels, and symptoms. These programs have varied focuses but generally attempt to lessen the stigma often associated with fibromyalgia and similar disorders (Hassett and Gevirtz, Reference Hassett and Gevirtz2009; Gómez-de-Regil, Reference Gómez-de-Regil2021).
Providing educational materials that promote basic self-management techniques to perform daily activities and manage symptoms, as well as suggesting ways to incorporate wellness activities into daily life, should be one of the main forms of care in fibromyalgia. In addition, it is important that caregivers be aware of these educational materials and use them in their clinical practice (Arnold et al., Reference Arnold, Clauw, Dunegan and Turk2012; Arnold and Clauw, Reference Arnold and Clauw2017).
Continuing education after diagnosis is a key goal in fibromyalgia. As part of this continuing education, the importance of having good quality educational materials should be highlighted so that they can be disseminated to all patients (Arnold et al., Reference Arnold, Clauw, Dunegan and Turk2012).
To the best of our knowledge, there are no studies on the development and validation of an e-book to promote the health of individuals with fibromyalgia. Thus, the addition of this e-book to fibromyalgia treatment protocols is necessary. Especially when combined with other modalities, such as physical exercise, sleep hygiene, and psychological support, it tends to increase the effectiveness of care (Hassett and Gevirtz, Reference Hassett and Gevirtz2009).
This e-book was built from the opinions and experiences of patients with fibromyalgia, as well as health professionals. This differential in the development of the e-book corroborates the scientific literature, especially in the context of preparing educational materials, as this listening can improve the content of the material to promote self-management of care for patients with fibromyalgia, helping to improve adaptive behaviors and incorporate them into daily care practices (Montesó-Curto et al., Reference Montesó-Curto, García-Martinez, Romaguera, Mateu, Cubí-Guillén, Sarrió-Colas, Llàdser, Bradley and Panisello-Chavarria2018).
Fibromyalgia treatment methods differ from patient to patient, as there is no standardization of treatment protocols. Methods that use a single treatment do not produce satisfactory clinical results (Saral et al., Reference Saral, Sindel, Esmaeilzadeh, Sertel-Berk and Oral2016), so the Amigos de Fibro (Fibro Friends) e-book was developed to be used in support of the care already offered to these patients. The Amigos de Fibro (Fibro Friends) e-book does not seek to be the only treatment and should be used as a complement to care approaches. According to the scientific literature, no one treatment works for all symptoms of the syndrome, and fibromyalgia is usually treated using a combination of approaches, including medication, exercise, sleep hygiene, and psychological support. In addition, treatment requires patients to be active participants in promoting their care, so the e-book comes with the purpose of empowerment (Arnold et al., Reference Arnold, Clauw, Dunegan and Turk2012).
The use of new technologies is growing in health communication for health promotion, disease prevention, and health care delivery. In addition, technologies help self-manage a condition, provide social support, or provide help in making health decisions (Yuan et al., Reference Yuan, Couto and Marques2021). Online educational strategies have been carried out. Contrary to popular belief, online educational intervention has been shown to be effective, especially in improving patient knowledge about the disease, health outcomes, and psychological variables. Some studies use specific websites to provide educational information to fibromyalgia patients (Conversano et al., Reference Conversano, Poli, Ciacchini, Hitchcott, Bazzichi and Gemignani2019). In addition, there are targeted interventions in eHealth (health care supported by information and communication technology solutions) that have been applied in Brazil. The first one in Brazil was the ProFibro application, which was developed and has shown positive results in improving quality of life, symptoms, and self-care in this population (Yuan and Marques, Reference Yuan and Marques2018).
Regarding non-pharmacological treatments for fibromyalgia, health education strategies have been successfully adopted in most cases (Pereira Pernambuco et al., Reference Pereira Pernambuco, de Souza Cota Carvalho, Pereira Leite Schetino, Cunha Polese, de Souza Viana and d’ Ávila Reis2018; Antunes et al., Reference Antunes, Couto, Bertolini, Loures, Schmitt and Marques2021b). They can induce healthy habits, coping strategies, and empowerment, and their benefits have been demonstrated in some studies (Díaz-Cerrillo et al., Reference Díaz-Cerrillo, Rondón-Ramos, Pérez-González and Clavero-Cano2016; Yuan et al., Reference Yuan, Couto and Marques2021). However, they were always carried out through printed material, and the e-book format is not found in the scientific literature. In addition, the studies carried out have different characteristics regarding the direction of the education and the development of intervention sessions (García-Ríos et al., Reference García-Ríos, Navarro-Ledesma, Tapia-Haro, Toledano-Moreno, Casas-Barragán, Correa-Rodríguez and Aguilar-Ferrándiz2019; Antunes et al., Reference Antunes, Schmitt and Marques2021b).
It is important that health professionals be trained and prepared to apply educational interventions for individuals with fibromyalgia and disseminate this possibility of care throughout the health network. The Amigos de Fibro (Fibro Friends) e-book emerges as a good alternative to promote health in the context of primary health care in Brazil. Primary health care providers should also consider including educational technologies, especially mild ones, in the ongoing care of patients with fibromyalgia (Arnold et al., Reference Arnold, Clauw, Dunegan and Turk2012). Thus, works like this stand out as facilitators in the process of understanding the health-promoting attitudes of individuals with fibromyalgia, facilitating communication, and promoting better control of the syndrome’s symptoms (Faria et al., Reference Faria, Horta, Reis, Soares and Moreira2022). Amigos de Fibro (Fibro Friends) began to be shown in national and international scientific literature, as well as in scientific events with the aim of disseminating scientific knowledge and the application of Amigos de Fibro (Fibro Friends) in different spaces and contexts. In addition, the great project Amigos de Fibro has already published its development (Antunes et al., Reference Antunes, Schmitt and Marques2022c) and validation (Antunes et al., Reference Antunes, Schmitt and Marques2022d) version in national and international journals, as well as presented at various events related to rheumatology and public health (Antunes et al., Reference Antunes, Schmitt and Marques2021e; Antunes et al., Reference Antunes, Schmitt and Marques2021f; Antunes et al., Reference Antunes, Schmitt and Marques2022g; Antunes et al., Reference Antunes, Schmitt and Marques2022h).
Study limitations
Despite presenting several positive characteristics, excellent content, and many advantages, the e-book as a means of dissemination has peculiarities that bring certain limitations to the work. In Brazil, there are still locations without access to the internet. Therefore, access to technology is precarious or even non-existent, which reduces the reach of the material and the dissemination of educational content. Furthermore, the patient-therapist alliance is likely crucial to reconceptualizing pain and changing the patient’s beliefs around the illness. The e-book makes the exchange between patient and professional impossible. However, it must be added to interventions already performed by the patient.
Conclusion
The e-book was designed and validated for its content and appearance by groups of judges and target audiences. The proposal to offer information on self-care in fibromyalgia presented practical and scientific relevance, having the potential to contribute to the empowerment and health promotion of these individuals. It is believed that the e-book is, in addition to an educational material, an instrument to improve communication and health empowerment for individuals with fibromyalgia.
Practical implications
The use of the e-book by individuals with fibromyalgia can promote knowledge regarding care and practices to control the symptoms of the syndrome, consequently subsidizing support through a light educational technology that promotes the health and quality of life of these individuals.
Acknowledgements
We are grateful to the Coordination for the Improvement of Higher Education Personnel (CAPES) for encouraging research.
Financial support
This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES) – Finance Code 001.
Competing interest
None.
Ethical standards
This study followed the precepts established by Resolution 466/12 of the Ministry of Health and was submitted for consideration by the Research Ethics Committee of the Faculty of Medicine of the University of São Paulo and approved under opinion no. 3.197.778.
Open access
