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ORIGINAL RESEARCH

 

Mothers' experience in caring for children with asthma

 

Rosana dos Santos CostaI; Maria de Lurdes ZanolliII; Lidya Tolstenko NogueiraIII

I Nurse. PhD. Adjunct Professor. Federal University of Piaui. Brazil. E-mail: rosanacosta@ufpi.edu.br
II Doctor. PhD Professor. Campinas State University. Brazil. E-mail: zanolli@fcm.unicamp.br
III Nurse. PhD. Associate Professor. Federal University of Piaui. Brazil. E-mail: lidyatn@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2018.16983

 

 


ABSTRACT

Objective: to understand mothers' behavior in caring for children with asthma. Method: this qualitative study, guided by the ethnographic method, was conducted from July 2013 to January 2014. Participants were 12 mothers of 6 to 7 year olds with severe asthma selected by family health strategy teams in the municipality of Teresina, Piauí. The research project was approved by the research ethics committee. Results: the categories extracted from the accounts were: the mother and the child's diagnosis of asthma; the mother and the child's asthma crisis; the mother and the neighborhood health service. Conclusion: mothers were found to know little about proper management of the disease and displayed dissatisfaction with the neighborhood health service. There emerged a need for educational activities to reduce asthma morbidity in the study population.

Descriptors: Asthma; child health; qualitative research; public health.


 

 

INTRODUCTION

Pediatric asthma is a chronic inflammatory disease that is characterized by recurrent episodes of wheezing, dyspnea and coughing, causing changes in the child's personal development and family dynamics. This condition is usually related to school absenteeism, clinical fragility, and the need for a therapeutic and social support plan that create physical, intellectual and emotional impacts, leading to human suffering on the part of patients and their families.1-3

Considered the third cause of hospitalizations among children, asthma presents a complex treatment and requires the active participation of the patient and family members. As in childhood, the patient does not have autonomy for self-care, the control of the disease is directly influenced by the care exercised in the home environment, specifically in the maternal figure, which constitutes the main social determinant of health in early childhood.4,5

Due to the seriousness and importance of family support for asthma control, the maternal education is essential, aiming at the implementation of treatment actions based on strategies for the maintenance of the child's life. In this sense, the technical-scientific knowledge related to the disease, the prevention of complications and the planning of care should take into account cultural values, attitudes and personal and family beliefs, not restricted to the biomedical model. Failure to observe these aspects may lead to a reduced adherence to the treatment and inadequate management of the disease.3,6

Thus, the maternal care is confronted with intense demands that require time, dedication, vigilance and technical preparation, involving significant processes of family reorganization. In this perspective, and looking for the reflection on the practice of caring, this study aimed at understanding the maternal behavior in the care of children with asthma.

 

LITERATURE REVIEW

Asthma affects individuals of all ages, in all regions of the world, from different sociocultural levels, and presents varying degrees of severity and frequency for the patient, family, and society. Because it is a chronic condition, it adversely affects the development of patients, making it difficult to socialize and contributing to increase the vulnerability of behavioral disorders.7,8

Currently considered a public health problem, asthma has been showing a marked increase in its overall prevalence, due to its morbidity and mortality and the economic costs to health services.8 It is estimated that 300 million people worldwide have asthma, of which 20 million are Brazilians.9,10

Its etiology raises many divergences in the scientific environment. However, the onset of the disease seems to result from the combination of genetic predisposition to environmental, economic, demographic, social and emotional factors. In addition to these, it is also possible to list as inducers of airway inflammation, and the consequent triggering of bronchospasm, the climate changes, food, drugs and emotional stress.5,11

Children under this condition usually have primary access to the health care system. It is, therefore, the responsibility of those involved in level of care the implementation of actions of promotion, prevention, protection, diagnosis and treatment of diseases, developed through practices of integrated care, carried out by a multiprofessional team and directed to the population in a defined territory.12

Thus, it is expected that professionals working in the basic health care will be able to provide adequate guidelines on asthma to those who are responsible for the child, as well as to carry out periodic follow-up of patients, through planned consultations, home visits and educational programs aimed at improving the disease control, as well as timely referrals to specialists, whenever necessary.

 

METHODOLOGY

It is a descriptive study of the qualitative type that used the ethnographic method as methodological support of analysis, which can provide the researcher with the conditions to understand the health-disease process from the point of view and reality of the subjects themselves through the systematic process of observation, detailing, description, documentation and analysis of lifestyle or culture.6,13

The study was carried out in the city of Teresina-PI, northeastern Brazil, with 12 mothers of children diagnosed with severe asthma who were aged between 6 and 7 years old, accompanied by the family health strategy teams (FHS) of the northern region of the city.

The FHS teams were asked to identify the registered children in their assigned area, which could be part of the study, based on the following criteria: children diagnosed with severe asthma for at least 6 months and who have had as main caretaker their mothers.

In the team selection, two teams selected three children, three teams chose two children, three teams indicated one child and the other teams reported that they did not have registered children that met the established criteria.

The next stage was marked by a meeting at the basic health unit (BHU), between the mothers and the researcher, in order to explain the research objectives, as well as the method to be used with the respondents.

Of the 15 mothers (M), 12 accepted to be part of the study (M1 to M12). After the initial contact at the BHU, when they signed the Free and Informed Consent Term, the researcher went to the mothers' residences to establish the first contact with their cultural reality and begin the immersion in the field of research, stage in which the interview with the informants was carried out, there was also a ritual observation, deduction of kinship terms, tracing of property lines, conducting the household census, and notes in her journal.14

The data collection was carried out from July 2013 to January 2014, through semi-structured interviews, with voice recording, during biweekly visits to the residences and to the mother's social environment, moments in which the participant observations were made, which made possible a greater involvement of the researcher with the subjects, in addition to the recording in the field diary.

The material from the field was analyzed and systematized following these steps: transcription of the reports; coding of the reports according to the analysis proposal; synthesis and interpretation of the results, 15 which allowed to determine the thematic categories, as well as to provide subsidies for the final construction of a text expressing the synthesis of the object of study.16 In the meantime, the categories emanating from the discourses were: The mother faced with the diagnosis of pediatric asthma; The mother and the pediatric asthma crisis; The mother and the neighborhood health service.

This study was approved by the Research Ethics Committee of the Federal University of Piauí, with CAE No. 0046.0.045.000-10, and it complied with the ethical requirements of research involving human beings.17

 

RESULTS AND DISCUSSION

The mothers who participated in the study were aged between 26 and 55 years old, with a mean age of 38 years old. As to their marital status, 7 (58.4%) were married, 4 (33.3%) were single and 1 (8.4%) was a widow. Regarding their schooling level, 1 (8.4%) never studied, 7 (58.4%) had incomplete Elementary School, 2 (16.6%) had incomplete High School, and 2 (16.6%) had complete High School. The per capita income of each household was less than a national minimum wage at the time of the survey.

The schooling level of the mothers who participated in the study was considered as a negative factor in the adequate management of asthma, because through the participant observation in the field of research, some have demonstrated difficulties in understanding the medical prescriptions and identifying the exact volume of medication to be given to the child, by the use of a syringe or a measuring cup, which may contribute to the erroneous administration of medicament. It is therefore understood that parents with little information may have difficulty recognizing the symptoms of the disease, which may lead to a worsening of the child's health condition.11

The per capita income range of the studied group is certainly a significant obstacle to the process of adherence to the asthma treatment, either because of the difficulty in acquiring medication, when not available by the public health service, or because of the impossibility of acquiring the materials and/or the equipment necessary to control the condition. It should be highlighted that the income is a highly questioned variable as a triggering factor for asthma; however, there is a relative consensus between the existence of poverty and the worsening of the disease.18

The approach to the mothers, in their own social contexts, allowed the researcher to immerse himself in the cultural universe of the group studied and to understand the behaviors, sensations and feelings of the mothers related to the act of caring for the asthmatic child.

From the critical and interpretative analysis of the set of material coming from the field of research, through the grouping of similar themes, the following thematic categories emerged.

The mother faced with the diagnosis of pediatric asthma

The moment when the diagnosis of a disease is made has an impact on the patient and/or family members and, in the case of a chronic illness, this may become much more evident due to the development of an imaginary loss of the child.

The mothers, when discussing the asthma diagnosis of their children, appeared indignant and desolate, they also showed reactions like worry, fear and sadness, demonstrations that can be seen in the following speeches:

I did not like to know that my son has asthma. His crisis is very strong and I fear for his life. He is too small and I am afraid he will die. [...] . (M3)

I was afraid [...] I did not expect the crisis he had at three months of life to be so severe. (M4)

It can be observed that the diagnosis of asthma causes an emotional shock in the mother, causing her the sensation of suffering.19 However, among the factors that contribute to facilitate or hinder the management of the mother, in relation to the chronic illness of the child, mention is made of the support of the family social network and the quality of care provided by health and education professionals.20

The chronic disease, because of its delayed course, frequent exacerbations in the clinical condition, the need for prolonged treatment and the decrease in the functional capacity of the patient may cause changes in the physical and emotional development of the child, causing, as consequences, social restrictions, stress, affective disorders and insomnia, among others. It should be emphasized, however, that these emotional imbalances in the asthmatic child may be related more to the quality of the relationship between the family and the child than to the inherent behaviors of the infant.21,22

The mother and the pediatric asthma crisis

Faced with the asthma crisis of their children, the mothers reported that they were scared and afraid, and considered that it would be best to take the child immediately to an emergency service, as shown in the following statements:

When my son started to cry and had shortness of breath I immediately took him to the hospital. I was very worried [...]. (M2)

I was very scared [...] my son woke up in the morning and felt shortness of breath and had his nails purple, then I took him quickly to the emergency room [...]. He has very strong crises and I always take him to the hospital. (M4)

[...] asthma is terrible [...] I have to take my son to the hospital from time to time. I took it in a hurry today. [...]. (M8)

The mother's knowledge regarding asthma has been associated with a greater adherence to treatment and, consequently, greater control of the symptoms of the disease. Therefore, disinformation is related to the main factors that are responsible for the greater demand for emergency services and the higher hospitalization rate caused by asthma.23

The emergency services have been used as a regular place of asthma consultations, which is inadequate because, in addition to causing unnecessary overcrowding of these services, it leads to deficiencies in the treatment and control of the disease, which causes negative implications for children, for mothers and for society.5,23 The frequent use of this hospital sector can be exemplified in the following statements:

I do not like going to the emergency because it is a very stressful environment. I do not have a car, so when the asthma crisis happens at dawn, we have to bother the neighbors. [...]. But what can we do? Those who have an asthmatic child have to get used to going to the emergency room [...]. (M2)

[...] sometimes I get to go three times a month with him for the emergency [...]he runs, he plays and gets tired, then I run to the hospital. (M10)

The educational programs aimed at asthma control are strategies that can bring health professionals closer to patients and, in the case of children, their caregivers, in order to assist them in acquiring motivation, skills and confidence, and thus favoring the correct management of the condition.24,25 Considering that the human behavior depends on their beliefs and what is considered to be true, the health education should be valued, because this is a time when the patient and their caregiver are inclined to understand the disease and its treatment in order to achieve the modification of their attitudes, their habits and their perceptions regarding asthma.3,23,26

The life of the asthmatic child does not always develop in a habitual way, being in most cases the object of exaggerated care on the part of the mothers, due to the fear of the exacerbations of the symptoms of the disease, which often prevent their children from practicing their own children's activities such as outdoor games, riding bicycles, walking barefoot, eating frozen foods, exposing themselves to the sun or wind. 3,27 These restrictions on the lives of children are evidenced in statements such as the following:

I do not let him drink cold water or have a popsicle [...]. He cannot run [...]. (M5)

I ask him not to walk in the sun, not to be near dust and not to shower all the time. (M9)

He cannot play ball or ride a bike [...] When he runs, he gets tired soon! (M11)

The impossibility or prohibition of playing sports, combined with maternal overprotection, can lead asthmatic children to depression, social isolation, low self-esteem and lack of motivation.5 It should be emphasized that children with asthma do not have to stop performing physical activities, because these have as benefit the improvement of their aerobic conditioning, reducing their susceptibility to exercise-induced bronchospasm, but the patient must be adequately treated.28

Most mothers have also pointed to the environmental care as necessary factors for the control of asthma in their children, but sometimes they adopted attitudes contrary to the one advocated by the consensus about the disease, increasing the possibility of resurgence of the asthma symptoms in the child.

I always wash and sweep his room, because dust and smoke impair the disease and the fan has to be cleaned, because the dirt remains there [...]. (M1)

The house is always clean, I do not let him play with sand. (M6)

I do not let him play with the dog [...], but it is difficult to control [...]. (M10)

The development of asthma occurs due to a combination of genetic factors and environmental exposure. Thus, for the adequate control of this condition, it is necessary that the physical space of the home environment undergoes a reorganization. These adaptations necessarily include the removal of carpets, plants, curtains, upholstered sofas and domestic animals from the home.3,27

The mother and the neighborhood health service

The FHS, instituted by the Brazilian Ministry of Health, must be operationalized through the implantation of multiprofessional teams in the BHU, being considered as the preferential entrance door of the Unified Health System. These teams must carry out actions to promote health, prevention, recovery, rehabilitation and care of families against the most frequent diseases and injuries.8,29

The mothers, however, did not seem satisfied regarding the care provided by the local health service professionals responsible for monitoring their children's health status, as reported below.

The health unit nurse asks me to take my son to the hospital when he has a crisis [...]. But she never gave me much advice about the disease. (M3)

[...] the worse thing is that the health agent does not bring the doctor here, not even when my son is tired [...] when I go to the unit and it is not a child care day, they do not even look at the boy [...]. (M7)

My child's asthma is case without solution. [...] when I look for a doctor at the sun it, I do not receive proper attention. [...] so, that is the same as nothing for me. (M12)

The bond between the mothers and the FHS staff in these communities is very fragile, since it is easy to see that mothers do not differentiate the activities of the nurse and of the community health agent (CHA), as well as the fact that they also avoid informing the health of the child to the professionals of the aforementioned team. It is believed that this attitude of the mothers is motivated, in part, by the low credibility attributed by them to the local public health services. This position is reflected in the following statements:

[...] when the health agent comes here, at home, I avoid commenting on my son's health condition. I only take him to the neighborhood health unit to do routine exams, but about asthma I do not comment to the nurse there. (M4)

The nurse always comes here, picks up his vaccine card and schedules appointments for him at the health unit. She always comes to weight my son. (M5)

The community work requires from the professional more than the technical-scientific knowledge, it also requires that it is human, that it sees the community, by providing care in a comprehensive way, promoting appropriate treatment aimed at the reality of its clientele and valuing, as well, their culture.

The role of nursing in favor of collective health is recognized; the nurse works as a mediator between the community and the local health system, aiming at health education26. The nursing performance is described in several education programs for the control of asthma, being responsible for educating patients and their families.30,31 Despite the recognized social importance of this professional category in the Brazilian public health, it was observed from the experience with the mothers of the study that the most remarkable professional of the FHS team is the CHA and the doctor. The CHA, for facilitating the access of the population to the BHU, and the doctor, due to the medical prescription.

It is the responsibility of health professionals to develop strategies to intervene in the health-disease process, seeking to prevent diseases and maintain the health of the population.30,32 The professionals must be sensitive to identify the main needs and establish, in this way, a relationship of mutual trust with the population that they assist. It is noteworthy that the health services maintained by the public sector in Brazil are scrapped, with a physical and quantitative structure of precarious human and technological resources. However, for the good exercise of the profession, health professionals must make their necessary claims, but never lose the holistic view towards the care of the patient.

 

CONCLUSION

The mothers of the studied group are directly affected by the diagnosis of pediatric asthma, and how they cope with the situation is key to improving their child's health. They understand asthma as a serious illness, which needs care and attention, and they know that, among other factors, the environmental control is of paramount importance to keep their children healthy and prevent episodes of exacerbation of the disease. However, they do not adequately manage the condition, predisposing their children, and themselves, to stressful situations, among which the frequent demand for the emergency service stands out.

It is recommended that the FHS professionals develop educational activities, essential in the process of asthma control, aimed at patients and their families, with the objective of improving the adherence to the treatment and management of the disease, thus reducing its morbidity and mortality, as well as improving the affective bond with the group studied.

As a limitation of the study, it is possible to mention the fact that only the mother of children with asthma and not all the residents of the household were considered as the focus of the investigation. Asthma, as a debilitating disease, changes the whole dynamics of the residence, and may not only negatively impact the mother, although she is usually the main caregiver, but also other members of the family. Thus, advances in the investigation of the impact of pediatric asthma on the daily routine of other family members are necessary.

 

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