ORIGINAL RESEARCH

Health education for families of children and adolescents with chronic diseases

Mayara de Melo Pereira^I; Polianna Formiga Rodrigues^II; Nathanielly Cristina Carvalho de Brito Santos^III; Elenice Maria Cecchetti Vaz^IV; Neusa Collet ^V; Altamira Pereira da Silva Reichert^VI

^I Nurse by the Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: may_melo1520@hotmail.com
^II Master's degree from the Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: poliannaformiga@hotmail.com
^III Ph.D. from the Universidade Federal da Paraíba. Docente da Universidade Federal de Campina Grande. Cuité, Paraíba, Brazil. E-mail: nathaniellycristina@gmail.com
^IV PhD student and professor of the Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: elececchetti@ig.com.br
^V Ph.D. and professor of the Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil. E-mail: neucollet@gmail.com
^VI Ph.D. and professor of the Universidade Federal da Paraíba. João Pessoa, Paraíba, Brazil E-mail: altareichert@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.4343

ABSTRACT

Objective: to investigate health personnel's understanding of health education for families of children and adolescents with chronic diseases. Method: this qualitative study involved semi-structured interviews of 21 Family Health Strategy personnel in João Pessoa, Paraíba State. Results: the category health professionals' understanding of health education highlighted a lack of knowledge of the essence of health education activities, as well as a failure to identify children and adolescents with chronic disease in the coverage area. Conclusion: it was found that health personnel need to identify the children and adolescents with chronic diseases and to undertake educational actions with their families in order to enable them to achieve autonomy in care, so as to prevent relapses and resulting hospitalizations.

Keywords: Education in health; primary attention to health; chronic disease; child's health.

INTRODUCTION

Health education measures for families of children/adolescents with chronic diseases are essential for the family health strategy (FHS) when considering the importance of the continuity of care at home and preparation to cope with this chronic condition. This is because chronic diseases are a complex health problem that generally result in a prolonged and painful follow-up requiring permanent care regarding treatment and factors that may aggravate the child's state of health¹. As some studies have already reported, a chronic condition during childhood alters the daily life of the entire family ^2-4.

Health education is the combination of knowledge and practices focused on disease prevention and the promotion of health. It is important to seek an "approach that favors the protagonist, the experiences and the knowledge of the subjects involved in the educational action, by understanding that these experiences can stimulate individual and collective changes" ^5:534. From this perspective, the subject is apprehended as knowledgeable, not just as the recipient of information.

In the case of children/adolescents with chronic diseases, health education should involve professionals and family members in the educational process ⁶ who, through dialogue ⁷, can exchange experiences that help to construct a unique therapeutic project ⁸.

It is important to value the dialogue dimension in health education, because dialogue is an essential instrument in the educational process; users must be recognized as the bearers of knowledge that, although different from technical-scientific knowledge, has its legitimacy ⁹.

It is in this sense that the health team needs to be organized, sensitized and mobilized to pay special attention to these children/adolescents and their families, in order to help them achieve autonomy in care using health education.

When inserting family members of the child/adolescent in the health education process, it is important that professionals adopt a participatory and symmetrical approach by creating spaces for them to propose interventions that would improve the quality of life of the child ¹⁰. Thus, the educational actions of professionals who work for the FHS with the families of children/adolescents with chronic diseases can instrumentalize them to perform effective care within the context of integrality, respect, acceptance and humanization, aiming to avoid relapses and future hospitalization.

Thus, this study aimed to investigate the understanding of health professionals about health education delivered to family members of children/adolescents with chronic diseases.

REVIEW OF THE LITERATURE

The Brazilian Ministry of Health states that health education under the FHS is a preventive practice attributed to all the professionals who make up the health team. Team members must be able to provide comprehensive assistance to families, identifying situations of risk to health and, in partnership with the community, deal with the determinants of the health-disease process. The health team should also develop health education processes aimed at improving individuals' self-care, valuing knowledge and practices in the perspective of an integral and resolute approach and thus with moral principles, make the creation of trusting relationships possible by means of commitment and respect ¹¹.

Health education is seen as a transforming action in care that brings together what is established in the network of scientific knowledge and popular wisdom ¹². Furthermore, health education encourages reflection that leads to changes in the attitudes and behaviors of users and in so doing gives them autonomy ¹³.

In this way, the concept of health education is anchored in the concept of promoting health, since both require the participation of the population with the individuals' needs, lifestyle, beliefs, values, desires, options and experiences. This participation requires involvement, commitment and solidarity in the daily construction of joint decisions established by all whom participate in the educational process and who are committed to exchanging experiences and knowledge ¹⁴.

In respect to education related to caring for the child/adolescent with a chronic disease, it is necessary to guarantee that the health team has training. This should include up-to-date knowledge, pedagogical skills, communication skills, listening and comprehension, as well as negotiation skills, the use of simple and clear language, and aptitudes to explain doubts and simplify interactions with the patient and family ¹⁵.

METHODS

This is a qualitative, descriptive study performed in family health clinics (FHCs) of Sanitary District III of the city of João Pessoa, PB, Brazil between August and December 2011. The participants of the study were 21 university graduated health professionals, including nurses, doctors and dentists who cared for families of children/adolescents with chronic diseases treated in these clinics. The inclusion criteria were to have worked as a physician, nurse or dentist attending children and adolescents registered in the area covered by the FHC for at least six months. The exclusion criterion was professionals who were on vacation or on leave during the period of data collection.

Data collection was performed using a semi-structured interview with the following guiding question: What do you understand by health education provided to families of children/adolescents with chronic diseases? The interviews were recorded on digital media and transcribed in full for further analysis. All participants signed informed consent forms and, to ensure their anonymity, are identified with the initial letter of their professional category – P (physician), N (nurse) or D (dentist) – followed by the sequence number of the interview.

The data were processed, following the stages of thematic analysis ¹⁶, which consists in discovering the core themes that make up a communication whose presence or frequency means something to the analytical objective. Thus, we thoroughly and repeatedly read the interviews, which allowed us to elaborate the category " The understanding of professionals about health education provided to families of children/adolescents with chronic diseases ".

In compliance with Resolution No. 196/96 of the Brazilian Ministry of Health in force at the time of the study, the project was approved by the Research Ethics Committee of the Lauro Wanderley University Hospital (Protocol No. 83/11).

RESULTS AND DISCUSSION

Of the 21 professionals who participated in the study, eight were nurses, seven were doctors and six were dentists, all of whom were female. The time after graduation varied from 15 to 30 years for the nurses, one to 40 years for the physicians and three to 21 years for the dentists. Of these professionals, nine are specialists in family health, six in public health, four in pediatrics, and two professionals do not have complementary training.

The FHCs, as part of the Brazilian National Health Service (SUS), provide a new model of health care with a new ontological vision of the individual, to be understood comprehensively, encompassing biopsychosocial, cultural and spiritual aspects. However, it still seems to be common for some health professionals to direct their educational activities only towards the disease, thus revealing traces of the traditional medical model.

The literature shows that the biological model of illness is still hegemonic in society regarding the educational measures developed by health teams¹⁷. Because this model is strongly focused on curative actions and on the patient's illness¹⁸, the professional tends to disregard the individual as an active being in the health-disease process.

It is noticed that some professionals still see the process of health education in a vertical manner, with hygienist counseling without respecting popular knowledge.

This education in general health, hygiene, to show how some diseases appear, how we have to act in the face of some diseases, talk about breastfeeding to pregnant women, talk about gestation, diabetes, hypertension. (O5)

The education that we develop, thus, guides the patient on how to do [...]. Disease prevention is very important health education, the control of diseases when they are already established, the importance of following medical guidance such as taking medications, taking the drugs correctly. (P6)

It is the person to clarify the kind of disease and educate the patient to fight against the type of illness, to clarify everything. Explain about the disease, educate, the diet, medicine, anything that goes with that type of disease. (N3)

People, in general, do not have a health education, [...], sometimes they are a little impolite because they would like to solve everything in the way that they want, many people receive professional opinion, they want to know more than the professional. (P3)

Professionals, by positioning themselves as the 'owners' of knowledge and maintaining an authoritarian posture constrain users, making them passive and non-participatory in the decisions about their own care. This posture is contrary to the principles of health education that constitutes a tool to improve the quality of care, in which the educational process should have a connotation of exchange between participants in a way that it stimulates dialogue, inquiry, reflection, questioning and shared actions ¹⁹.

Considering health education as a social practice focused on the problematization of daily life, by valuing the experience of the individual and the community, it is understood that health education actions have potential to transform the life of individuals, making them reflective subjects and participants in their own choices for a healthy life ^20,21. This way of acting is essential, especially when providing care for the families of children with chronic diseases, as this type of health problem requires continuous monitoring.

Therefore, it is necessary for FHC professionals to re-assess their practices. Moreover, it is imperative to adopt new ways of providing health, as well as to rethink the work methodology with a new look at health education based on dialogic relationships and on the valorization of popular knowledge, using the strengthening of the subjects' capacity of choice as a guiding axis ²².

In this respect, theories, medicines and information that can cure users are not enough. It is necessary to understand users in their singularity, each with their problems and their differences, with their values and their beliefs, inserted in a community, in the collective and in the environment ²³ in order to promote autonomy in respect to health needs.

This study identified that, in addition to not developing any type of educational action, some of these professionals reported that they did not know of the existence of any child/adolescent with a chronic disease in their area as can be observed in the following statements.

There is no child with a chronic disease, not even diabetes. (N3)

I have not identified a chronic disease like that, no. (D1)

Now, chronic diseases really, here, we do not have any, at least in my area. (N4)

Corroborating the results of this study with regard to the gap detected in the level of primary health care, one study identified from the construction of an ecomap that professionals at FHCs are not sensitive to the unique needs of these families, which negatively reflects on the healthcare network and social support. In addition, it compromises the construction of the line of care, since there is no follow-up of these children and families, proving that when the child needs health care, the family directly seeks a tertiary service²⁴.

In the perspective of health education as a tool to promote the health of children/adolescents with chronic diseases, in line with the principles of SUS, the concept of care is understood as an integral and humanized practice with a view to promoting health, whether to the individual or to the community.

Health education is a process where the worker, together with the other members of the team and some people who may need support with the theme, develops with the community, individually or collectively, matters of extreme importance in the perspective of [health] promotion and prevention, and even cure of the disease. (N7)

Health education involves different levels, starting at the basic level, our technical level of working, which in primary care is fundamental, fundamental to achieve our greatest goal which is to take our patient from the cycle of disease, problems that they come to try to treat, but not only treat, they have to prevent, prevent disease. (D6)

Another aspect evidenced in the interviews relates to health education as an axis of continued health education. This is defined as a dynamic and continuous teaching and learning process, aimed at analyzing and improving the qualification of health professionals and groups, in order to cope with technological evolution and social needs and meet the objectives and goals of the institution to which they belong ²⁵. This allows professionals to improve their technical-scientific knowledge thereby improving their actions.

Continuous education is also developed, which is nonetheless health education, but it is aimed at the worker. (N7)

You give the tools for continued education in health. (P4)

The literature emphasizes that continued health education comes with an organic link between education (formal education, education in service, continued education), work (sector management, professional practices, service) and citizenship (social control, participatory practices, otherness with popular movements, Links with civil society). It represents not only a teaching-learning practice, but also a health education policy, with an effort to identify the political link between education and health ²⁶.

In addition to the scientific knowledge that comes from continued health education, it is important that professionals still take into consideration some factors that favor their daily activities, such as healthy practices, trust, commitment and respect to provide a better professional-user relationship.

The education we develop guides the patient. [...] accompanies the patient as a whole, sees his psychosocial situation, the problems he has. Sometimes the patient arrives ill and at the end of the investigation, we conclude that his illness is stress. (P6)

That the person is guided about her health and that she always seeks her unity for her care. (D2)

The work developed in the FHS allows the professional to try to get to know individuals in their singularity in order to understand them in the entire context in which they are inserted. When this approach occurs effectively, the formation of a link between the professional and family members of children/adolescents with chronic disease is evident and provides benefits to both.

Education is a dynamic and flexible process that enables the diverse and unique human the possibility to develop their potential, to achieve autonomy and decide on their goals and actions. It should enable the individual to make choices based on critical reflection, on the causes, problems and actions needed to improve their living conditions and health ²⁷.

It is a way for us to empower people, to provide these people with information about situations that they experience. We have to be there giving this opportunity, making it easier for them to actually acquire this information and also to take care of themselves. If they get strong with this information, they themselves have their protagonist, in this case, of taking care of themselves. (N1)

One study states that health education should provide conditions for people to develop a sense of responsibility, both for their own and for the community health; this is considered one of the most important links between the individuals' perspectives, government projects and health practices. As space is created for the family to exercise its autonomy in the decision-making process about the chronic condition of their child, the members gain the possibility to exercise their function as citizenships ¹².

Thus, the concept of health education is anchored in health promotion, which deals with processes that involve the participation of the entire population in the context of their daily lives, not only those at risk of becoming ill, but also those with established problems, such as is the case of chronic diseases. This notion is based on health as a positive and dynamic state of searching for well-being that integrates physical and mental (absence of disease), environmental, personal and social aspects ²¹. Health education is so relevant to chronic health problems in childhood, to the point of transforming people's way of living.

It is the capacity that we have to transmit the knowledge to a person so that it transforms their life, can make that transformation, to get well-being, health, to know how to have leisure, fun; that we can transmit to her, at least , [...] that she lives well. (N2)

It's a way to show users how to have a healthy lifestyle with healthy behavior. Every educational practice that seeks to promote, stimulate, interact with the user, with people, with the patient in the sense of disseminating knowledge, healthy health practices, is health education. (D1)

Therefore, in order to provide health education, it is necessary to know oneself, to be able to understand the other, to have empathy, to exchange knowledge. To educate is an ongoing process, in which one teaches and learns each day, respecting the knowledge of the other and learning with him/her. Teaching is not only a way of transmitting knowledge; it is indicating possibilities for the individual's development and production ²⁷.

In this process, it is also fundamental to establish a relationship of empathy and respect between the professional and family members of children with chronic disease in order to promote autonomy in the care of the child, valuing the knowledge of these families to construct together an individualized therapeutic project.

Therefore, in order to promote effective health education, it is important to establish a partnership with the family, opening spaces to listen and encouraging members to share the care of the child/adolescent with a chronic disease²⁴, favoring the professional-user-family relationship resulting from positive coping of health problems and making self-care possible.

CONCLUSION

As health education is a principle of SUS, it should be practiced by professionals in the FHS in view of its potential for health promotion and for changing the quality of life of individuals and collectively. However, it can be seen from the results of this study that the understanding about health education by some professionals is still focused on the traditional medical model, although for others the focus is consistent with what is recommended, that is, health care actions should be focused on completeness.

This study also allowed us to reflect on the importance of health education as an indispensable tool for promoting the health of families of children/adolescents with chronic diseases, since, besides preventing relapse, it proposes new forms of relationships between health professionals and family members. Without this, important opportunities to intervene in a timely manner to strengthen families in the qualified care of their children will be missed.

It is important to stress that health education does not only transmit or transfer knowledge, but establishes an exchange of knowledge aimed at the construction of concepts and new lifestyles for the individual to have a healthier and better quality of life. Thus, the professional has the function of guiding subjects to achieve healthy lifestyles, helping them to make assertive choices. However, the knowledge of each one must always be taken into account and, in this way, individuals can be guided to think and reflect, and be able to take responsibility for their autonomy.

There is little scientific production in the Brazilian literature correlating chronic disease in childhood/adolescence in the primary health care and health education settings. This increases the relevance of this study, which may contribute to health professionals and institution managements to review educational actions related to the families of children/adolescents with chronic diseases, in order to assume their true role as interlocutor and mediator in the process of promoting the health of the individual, family and community.

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