ORIGINAL RESEARCH

 

Guidance for children of fathers/mothers with heart disease: possibilities and approaches

 

Cláudia ZamberlanI; Saul Ferraz de PaulaII; Hedi Crecencia Heckler de SiqueiraIII; Dirce Stein BackesIV; Jeferson VenturaV

I Nurse. PhD, Professor at the Universidade Franciscana. Brazil. E-mail: claudiaz@unifra.br
II Nurse. Master. Student of the Doctoral Program in Nursing, Federal University of Rio Grande, Brazil. E-mail: saul.ferraz@hotmail.com
III Nurse. PhD, Professor of the Graduate Program at the Federal University of Rio Grande-FURG. Rio Grande, Brazil. E-mail: hedihsiqueira@gmail.com
IV Nurse. PhD, Professor at the Universidade Franciscana. Santa Maria, Brazil. E-mail: backesdirce@unifra.br
V Nurse. Master. Student of the Doctoral Program in Nursing, Federal University of Rio Grande, Brazil. E-mail: enf.jefersonv@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2018.28057

 

 

ABSTRACT

Objective: to discover the possibilities of guidance for children of mothers/fathers with heart disease. Method: Grounded Theory provided the methodological frame of reference for data collection by semi-structured interview and observation of 11 children of mothers/ fathers with heart disease, and as a technique of data analysis at theoretical saturation. The study was approved by the health research ethics committee. Results: from the category 'Recognizing possibilities of guidance for children of cardiopath mothers/fathers', five subcategories emerged: Receiving medical guidelines; Receiving advice from nurses; Receiving guidance from family; Receiving guidance by other means; and Denying guidance from other professionals. There was a marked discrepancy in the way the guidelines were given to study participants. Conclusion: the findings point to the importance of children of parents with heart disease receiving guidance that surmounts the limitations of the biomedical model and apprehends the human person in its multiple dimensions.

Descriptors: Ecosystem; cardiovascular diseases; health promotion; nursing.

 

 

INTRODUCTION

Chronic non-communicable diseases (CNCD) are characterized by their multifactorial aspect and their development happens fundamentally throughout life. According to data from the World Health Organization, they are responsible for 63% of deaths worldwide and are a serious public health problem1. In 2012, estimates of death due to CNCDs reached approximately 74% in Brazil2.

Among the CNCDs, the cardiovascular diseases (CVD) stand out and, according to the Pan American Health Organization, are among the most common causes of morbidity and mortality in the world, reaching a total of 15.9 million deaths3. These diseases directly cause transformations in the most different contexts, going through the biological, psychological, spiritual and social aspects and revealing the interdependence thereof. The influence of these diseases in these aspects and in the spaces/environments in which the human being is inserted is evident, and it is indispensable to consider the multidimensionality of the human being, associated to the components of their ecosystem4.

The purpose of health promotion is related to health determinants and proposes equal opportunities for individuals and the community, providing to the population knowledge and control of factors that influence health. These determinants include access to information, healthy choices, health education, healthy living environments and organized health settings that address these needs5.

Thus, it becomes relevant to know the ecosystem in which these people are exposed and thus delineate promotion and prevention strategies. Knowing the possibilities of guidelines to the children of cardiac parents provokes to rethink attitudes and behaviors besides guiding new research on the subject. Thus, the objective was to know the possibilities of guidelines for children of a father/mother with heart disease.

 

THEORETICAL-METHODOLOGICAL FRAMEWORK

This study is part of a larger study called Household ecosystem of cardiac parents and their children's way of life: possibilities for promoting health through nursing/health knowledge. It is characterized as an exploratory research with qualitative approach 6. For this purpose, the Grounded Theory (GT) was used as a methodological framework7.

The scenario of this investigation was the home ecosystem of children living with parents with cardiovascular morbidities in the cities of Rio Grande/RS and Santa Maria/RS, in the Brazilian territory, and in the city of Porto, Portugal.

Participants were children whose father or mother had a cardiovascular morbidity. They were initially selected by active search in the parents' charts, registered in the Cardiology Department of the Santa Casa do Rio Grande. In the city of Porto, the selection was made through a professor-researcher at the Nursing School of the University of Porto. In the city of Santa Maria, the study participants were children of cardiac fathers/mothers who participated in a post-infarction orientation group, selected through the Interdisciplinary Guidance Group of an extension project.

In order to guarantee the confidentiality of the participants, they were identified as children followed by Arabic numerals according to the order of interviews.

The following items were considered as criteria for the selection of participants: being over 18 years of age, child of a father or mother with a non-communicable chronic disease, especially ischemic heart disease, designated as an acute myocardial infarction, and living with them; living in the urban perimeter of the city of Rio Grande/RS, Brazil; city of Santa Maria/RS, Brazil; and the city of Porto, Portugal.

Data collection was performed through an in-depth interview, following the steps of GT. After the transcription, codification of the data, concepts and elaborated abstractions, we reached the theoretical saturation, totaling 11 interviews.

The analysis of the data was concomitant to the collection, according to what is recommended by the GT, in a comparative and constant way, following the steps: open, axial and selective coding8-11.

The formal requirements contained in the national and international norms regulating research involving human beings were respected, obtaining approval by the Ethics and Research Committee of the Health Area-FURG: CAEE 11241812.8.0000.5324.

 

RESULTS

When addressing issues inherent to guidance, attention is paid to the fact that people will receive more than one information, since guidance is information based on a knowledge that has been tested, implemented and achieved positive results in line with some aspect that one wants to change, improve and/or establish a possibility of changes.

Recognizing possibilities of guidance for children of parents with heart disease

According to the systemic paradigm, this category provides guidance as a set of practices established from something that is already known, but interlinked to a context that one wants to modify/improve. However, guidance should not be specific, but rather based on the context, the environment and all the elements that constitute an ecosystem. Therefore, it can be something built on what is already known, observed and previously understood.

From this category, the following subcategories emerged: Receiving medical guidance; Receiving guidance from nurses; Receiving guidance from family; Receiving guidance from other means; and Denying guidance from other professionals.

Receiving medical guidance

Medical guidance has still been based on specific aspects and aimed at interfering with human health and/or the disease process. It is is based on the clinical analysis and on the biomedical model, which corroborates advances in the profession, however, it fragments the subject as systemic. This fragmentation may make it easier to manage the guidelines, but leaves gaps in some aspects, for not visualizing the human being in constant interactions and dynamic equilibrium. We see this fragmentation in the following speeches:

Oh! The person who guided us when my father had an infarction was the physician [...] he told him to take care of health, to eat well, to do physical activity, not to get stress out, not to smoke because it harms the heart. (Daughter 1 )

Another guidance expresses an information received, as it does not exemplify nor brings reflection on the importance of measures related to health promotion.

Doctors say it is not good to eat, fill up the stomach and go to bed; we have to do some exercise before. (Son 2 )

[...] but after my mother had an infarction, my father began to talk a lot with me and I have been changing my diet; he guides me because he is a doctor. (Son 8 )

In these guidelines, there are specific aspects that address important risk factors for the triggering of a CVD, but they do not consider the home ecosystem, which can have a unique influence on understanding, doing and redoing the received information. It is also believed that providing guidance after achieving knowledge of the households also permeates the technical knowledge and the relevance of the environment and its multiple and possible interconnections.

Receiving guidance from nurses

The importance of the systemic perspective in nursing care is one of the pillars of the guidance provided by nurses in different conditions of the health/disease process.

My brother was already a nurse at the time, my oldest brother; he was the one who gave us guidance [...] yes, he guided us. (Daughter 5 )

Well, in my case, my father participated in a post-infarction guidance group, and sometimes I attended it with him and received guidance as well. (Son 10)

Yes, I received guidance, especially from my nursing teachers. They guided me and talked about some things that are simple and we, at least I, started to pay more attention, because these are orientations from people in whom we trust more. (Daughter 11 )

Referring to the above, it was noticed that only one nurse provided guidance in the home context.

The professional's approach to the family allows a comprehensive knowledge about the living conditions of the people involved in the guidance process in the home ecosystem. This makes it possible to strengthen health actions directed by other means and, in addition, develops in people the independence of actions and reflection on the guidelines provided.

Receiving guidance from family

The family is the first space where the interactions between beings and, consequently, exchanges of information, guidelines and awakening to a new knowledge occur. A group of children mentioned that they were guided by a family member, however, they were not scientific orientations, but rather basic issues that this family member may had already knew and passed them along.

In fact, there's my grandmother who was a nurse and retired. She worked in the old Beneficência [hospital] , at Santa Casa. She was a nurse and a surgical assistant. She has basic knowledge, but she talks to us a little about the knowledge she already has, but they are things like - do not eat that, it's bad for you; if we get sick, she guides us, but nothing too deep. (Son 2 )

In order to take care of a family and, consequently, guide it, the members of this nucleus must insert themselves into the process and experience it in a unique way, identifying their difficulties about a specific illness.

[...] my husband says calm down, you have to take care of yourself [...], but I cannot. (Daughter 4)

[...] my whole family helped me and guided me because they are all health professionals. (Daughter 5)

[...] my mother is always warning me, like [...] it's enough, you should eat less, and we, the children, listen to it so that my father takes care of himself too. (Son 6)

[...] I received some guidance from my family so that we made some changes [...]. (Daughter 9)

This speech can be confirmed, considering that a son was quite worried about his father's health status. It is noticed that the guidelines provided by the relatives are more directed to the needs of the human being after the cardiac event. Therefore, the following aspects emerged: staying calm and guidelines about food habits.

Receiving guidance from other means

One of the means people often use to search for health issues are the electronic media. However, the search for guidelines, especially when it comes to health issues, should be based on the quality orientation provided by professionals effectively registered in specialized organs and that includes the reliability of these guidelines.

The following statements also show that the population also seeks health guidance on the internet, by:

[...] the internet guides me and we talk to each other [...] I'm always on the internet reading, searching things about it, always getting informed. (Daughter 3)

I think that all of us, at all times, receive some kind of guidance; the media is always there informing us. (Son10)

According to these reports, the internet is seen as a possibility of guidance in a world full of interconnections. Networking discussions, unlimited access to different information systems also enable health issues to be discussed and released in the electronic world.

Denying guidance from other professionals

According to certain statements of this research, it is clear that there is no interdisciplinary or multiprofessional guidance:

No, other professionals have not guided me, only the doctor. (Daughter 1 )

At first, no, not here; there is a lady who lives over there ... who is also a nurse, she works here at the health unit, but I know that no one guides here. (Son 2 )

No, nobody has guided me. (Daughter 3 )

Nobody ever told us to do more than what we already know [...] nobody told me anything, in any training. (Daughter 5 )

No, no, nobody has guided me; I mean I'm a nurse, now I'm aware, and I take great risks, but no one has guided me. (Daughter 6 )

The speeches show why non-communicable chronic diseases, especially cardiovascular diseases, are fundamentally interconnected to the system to which the individual is exposed. Guiding, in a multidisciplinary way, people who have not yet been affected by chronic diseases, can minimize future difficulties in the home environment.

 

DISCUSSION

Systemic thinking aims to understand the complexity of interactions in the home ecosystem. These interactions occur between all the elements composing this space/environment, in a dynamic and non-linear way12,13

Addressing the possibilities of nursing/health guidelines for the children of cardiac parents leads us to reflect on the fact that each branch of scientific knowledge relies on the concept of system, according to the delimitation of its object. In this way, it is necessary that there be interactions between the different sciences in order to build and reconstruct a new knowledge. The existence of a system presupposes the presence of an intrinsic organization, rooted in the interactions between the constituent attributes14. Parallel to this, for the provision of effective nursing/health guidelines in the home ecosystem, there must be interactions, which depend on the meetings and differences generated by manifestations of disorder for the construction of a new order, or for a new configuration emerges from chaos, contributing to healthy living12.

It is emphasized that health professionals from different areas of knowledge share common values, which corresponds to the plan of knowledge and actions for the construction of care, whether it is preventive, communicative, psychosocial or educational, among others, reiterating the relationships for the care practice15.

Highlighting the nurses' approach to this theme, studies have shown that educational activities in health, focusing on guidelines about a specific health need, are defined as actions aimed at health promotion 16,17

This study corroborates the fact that teamwork does not presuppose eliminating the specifics, since the differentiation of techniques is evident in the possibilities of the division of labor, making it possible to contribute to the improvement of services15.

In view of these considerations, the possibilities of guidance for the children of cardiac parents allow us to invest in a life with quality that can be built and consolidated through a process that includes reflection on the actions of people in what is defined as quality of life18.

A study on the quality of life of cardiac patients emphasized that nursing is a direct partner in the dissemination of preventive measures to the population since it includes in its main attributions health education in primary care - educational, informative and interactive activities directed at the population18. The implementation of strategies based on the promotion of a healthy lifestyle requires a coordinated effort between health care providers, that is, the multiprofessional team, in addition to the school system, government agencies, and industries, such as food and pharmaceutical industries.

Thus, in highlighting nurses' guidelines in the health education, a study showed that the nurse is an educator par excellence and, by systematizing care through guidelines and not focusing exclusively on the disease, he/she can influence people's way of life, making them subjects of their own decisions and mobilizing the whole society for the implementation of healthy public policies16, 19. However, a study carried out with 40 nurses working in primary care of a city of Rio Grande do Sul pointed out that the performance in health promotion is still strongly influenced by the biological model20.

In general, the possibilities of guidelines trigger the construction of conceptual bases that support the thinking and the manner in which people relate and determine their actions in a given ecosystem, in this case with a home emphasis. Chronic conditions significantly change people's lives and the way they live in the family, generating new daily needs21. Thus, authors emphasize that family members, as well as the organization and functioning of family dynamics, are affected22.

In this meantime, in reporting the work of the multidisciplinary team in the ecosystem perspective, a study showed that ecosystemic actions as ecological practices allow interaction in different actions, highlighting the interdisciplinary teamwork process, the ecological relationship between the health professional and the community and, above all, the relationship between the community and its space/territory/environment23.

This condition leads to the reflection that the possibilities of nursing/health guidelines can lead to the search for dynamic balance in an ecosystem. It changes through the disease process, and if this change occurs in the family nucleus, children in particular seek new directions through the guidance provided. A research emphasized that practitioners should be aware that interconnection with the environment, family, and society can cause significant changes in the lives of clients with CVD and, in general, of all people who interrelate with them18.

The importance of the mutual influence of the health practitioners is undeniable, as well as the appreciation that the clients affected by a CVD attribute to the professionals, when guiding in an interdisciplinary way.

Interdisciplinarity refers to the different disciplines that, by acting together, reinforce something woven together, affirming their certainties. In contrast, multidisciplinarity is defined by the same author as the union of disciplines in line with a common goal14. The combination of knowledge can provide interactive guidelines in a context that is considered the first social network of the individual, that is, the home ecosystem, the first space where relationships happen and develop 18. In this way, the understanding of the interrelationships and influences belonging to the home ecosystem will provide an understanding of the health-disease-care process24.

Nurses and health care providers need to know the family system to intervene in it, so as to contribute with guidelines based on the emerging needs of each ecosystem in search of dynamic balance.

 

CONCLUSION

The present study made it possible to know the possibilities of guidelines for the children of a mother/father with a heart disease, thus contemplating the research objective. It has found a marked discrepancy in the approach to the guidelines provided to survey participants, varying according to the professional category providing such guidance, as well as to other sources of information to which participants had access.

Medical guidelines are important in aspects that refer to specific factors that would prevent the development of cardiovascular pathology, but they become insufficient because they do not consider other elements that directly interfere in health promotion and prevention of diseases.

This study emphasizes not only the need for medical professionals to provide a holistic guidance, but also for nurses and other professionals to work in a multidisciplinary team. It reiterates the importance of guidelines for the children of parents with heart disease that transcend the limitations of the biomedical model and consider the human being in their multiple dimensions.

The present research has limitations regarding the method, since it restricts the findings to the population researched, not allowing to establish generalizations. However, although the results are limited to certain realities, these are of fundamental importance for conducting an interdisciplinary work and rethinking ways of acting that favor a systemic vision of health promotion.

 

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