RESEARCH ARTICLES

Family home care in feeding children with encephalopathy

Katia Aparecida Andrade Coutinho^I; Sandra Teixeira de Araújo Pacheco^II; Benedita Maria Rego Deusdará Rodrigues^III; Liliane Faria da Silva^IV

^I Master in Nursing from the Post-graduate Program of the Nursing Faculty of the State University of Rio de Janeiro. Assistant Professor of Faculdade Bezerra de Araujo. Nurse ate the Unversity Hospital Pedro Ernesto. Rio de Janeiro, Brazil. E-mail: katiacouttinho@yahoo.com.br
^II PhD in Nursing from the Escola de Enfermagem Anna Nery. Associate Professor, Maternal and Child Nursing Department, Nursing Faculty of the State University of Rio de Janeiro. Brazil. E-mail: stapacheco@yahoo.com.br
^III Professor of the Maternal and Child Nursing Department of the Nursing Faculty of the State University of Rio de Janeiro. Brazil. E-mail: benedeusdara@gmail.com
^IV Associate Professor, Maternal and Child and Psychiatric Nursing Department of the Nursing Faculty of the Universidade Federal Fluminese. Niterói, Rio de Janeiro, Brazil. E-mail: lili.05@hotmail.com
^V Article extracted from the Master's thesis entitled O cuidado prestado pela família à criança portadora de encefalopatia hipóxico-isquêmica no contexto domiciliar: contribuições para a enfermagem (The care provided by the family to the child with hypoxic-ischemic encephalopathy in the home context: contributions to nursing), Post-graduate Program of the Nursing Faculty of the State University of Rio de Janeiro, 2015.

DOI: http://dx.doi.org/10.12957/reuerj.2015.17762

ABSTRACT

This qualitative study examined the care practices of relatives feeding children with hypoxic-ischemic encephalopathy at home. Data were generated from February to April 2014 by applying the sensitive creative method to five groups of the families of children receiving outpatient treatment at a hospital in Rio de Janeiro City. The results, analyzed using French discourse analysis, revealed a diversity in feeding, sustained by the families' cultural beliefs and the challenges posed by the complexity of caring for these children, and also the importance of guidance from health personnel. It was concluded that including the family in clinical and educational interventions can contribute to the sharing of new knowledge and practices needed by relatives in order to cope safely with home feeding for children with encephalopathy.

Keywords: Children with disabilities; child care; family; nursing.

INTRODUCTION

The brain is responsible for commanding the physiological functions of our body such as: breathing, control of eliminations, movement, thought and senses. Therefore, an injury in this structure, even if small, often causes irreversible consequences triggering functional limitations, which impact the motor, intellectual and behavioral activities of the individual affected¹. This should not be understood as a disease but rather as a special medical condition.

However, the vertiginous evolution of neurology at the end of the twentieth century brought new therapeutic paradigms associated with new pharmacological compounds, increasing the ability to diagnose and intervene in this type of disorders. It is now known that neurological diseases in childhood occupy an important place in the group of diseases that affect this population, creating a situation of dependency for the child and the family, significantly impacting the physical, economic, social and emotional demands.

Chronic illness in childhood imposes changes in life and limits the child's participation in normal activities for their age impacting their growth and development process, affecting the daily life of all family members and, therefore, requiring assistance and monitoring by health professionals. The child with encephalopathy requires a special care^V, due to limitations presented in carrying out their activities of daily living, such as self-care, requiring help from caregivers ^2,3.

When considering effective care to the demands of children and their families, the nurse promotes a relationship of welcoming, bonding and effective listening, enhancing family to the care of children from their real needs⁴, thus emphasizing the importance of training family caregivers, as these children bring with them health needs with the highest level of complexity, requiring treatment of health services beyond the usually required by other children. These characteristics put them in an emerging child group in society, internationally identified as children with special health care needs (CSHCN), and in Brazil as crianças com necessidade especial de saúde (CRIANES)⁵.

The emergence of these needs directly impacts in the behavior of the involved family, and conditions to minimize the harmful consequences of the pathology should be offered, aiming at the CSHCN and the family quality of life⁶.

Although studies have already investigated the effects of encephalopathy in children^1,3, caregivers' knowledge on the specificities of this disorder has not been extensively explored. Regarding the care with feeding, we can observe scarcity of publications that address the impact of food care in the daily family dynamics⁷.

Thus, among the demands of care presented by CSHCN with encephalopathy, the feeding practice was discussed in this study, as it is relevant a closer approach of professionals with the daily routine of families of children with encephalopathy in the home environment.

Therefore, this article aimed to analyze the practices of families in feeding children with encephalopathy, when at home.

THEORETICAL-METHODOLOGICAL FRAMEWORK

Understanding that family caregivers of CSHCN with encephalopathies acquire new knowledge and practices when caring for their child when in the home context, and that the dialogue between the health professional and these family members should be a way to negotiate these care practices, the Freire design was chosen, highlighting the critical-reflexive concepts, awareness and dialogical education process as theoretical supports of this study.

Freire's Theory aims at the development of critical consciousness, with reflection on the reality, from the reflection-action-reflection dialectics, where the subject moves from awareness to decision making. Thus, awareness is the critical development of consciousness, in which the individual overcomes the naive view of reality, obtaining a critical view, in which reality is given as a knowable object where the person takes an epistemological position, turning oneself into subject, producing culture and history⁸.

The exercise of educational and critical practice aims to bridge the inequality of power that exists in the relationship between professionals and users, favoring a horizontal relationship in the search for solutions to the challenges of a healthier life, contributing to the increase in critical and reflective capacity of individuals⁹.

Therefore, Freire's ideas consider knowledge as something changeable and unfinished, constructed and reconstructed from the discussion of concrete problems in the realm of relations, through dialogue, critical and reflective analysis of subjects¹⁰. By incorporating these concepts to the everyday educational/care practice of nursing, the professional has the ability to transform or reconstruct knowledge of a group that does not have the technical and scientific knowledge, from stimulating critical and reflective thinking, as well as appropriating of knowledge from the common universe.

METHOD

Qualitative research, developed according to the creative sensitive method (CSM) based on the triad: group discussion, participant observation and creativity and sensitivity dynamics (CSD) as a driving force for the production of data¹¹. In this study, we adopted the body knowledge CSD ¹¹, in order to evaluate the feeding care to the child with encephalopathy, through the metaphor of a drawn body, pointing the way the caregiver means and reframes the nutritional care of that child.

The artistic production was carried out collectively, one production for each family group, with generating questions for debate: Which nutritional care do you perform with (child's name) when at home? How do you accomplish this care?

The scenario of the research was the domicile of the children attended in an outpatient clinic of a pediatric hospital located in the municipality of Rio de Janeiro.

Research participants were five families; a total of 12 family members, of whom five were mothers, two fathers, an aunt, a grandfather and three grandmothers.

We found the relatives by searching in the registration forms of the outpatient chronic children and in the medical records filed in the medical documentation sector, with which we performed a study of data related to their health history.

Inclusion criteria were: being direct caregivers of children with hypoxic-ischemic encephalopathy aged from zero to two years old when the research was performed; the child should be in the family living at home.

Family caregivers of children out of the established age and relatives of children who were hospitalized were excluded in the data collection period.

The research project was approved by the Research Ethics Committee of the Municipal Health Secretariat of Rio de Janeiro, under the opinion No. 473005 of 11.29.2013. All participants signed the Informed Consent Form, after being informed of the study objectives. To ensure participants' anonymity, they were identified by the initial letter of their names and the children's names were replaced by biblical names: David, Ana, Eve, Didymus and Elisa.

Data were generated from February to April 2014. During the creativity and sensitivity dynamics, the family members' speeches were recorded using digital voice recorder and then fully transcribed, after each meeting.

For the treatment of the data, we used the French Discourse Analysis¹², from the grouping in analytical frameworks: in the first we sought to pass the discursive object to the discursive process. In the second frame, the search was related to the meanings of the subjects' discourse, in which the use of analytical devices (interdiscourse, paraphrase, polysemy, metaphor, said and not said) was fundamental so that we could reach the understanding of the meanings of speeches.

RESULTS AND DISCUSSION

With the process of the empirical material analysis, the following themes emerged: the food offered by the family to children with encephalopathy and family care practices for feeding CSHCN with encephalopathy.

The food offered by the family to children with encephalopathy

The family members began their description talking about the kinds of foods offered to their children.

When I prepare his soup, I put vegetables, chicken liver, sometimes muscle, sometimes chicken, I always put something different. Sometimes when we put beet we do not put carrot, only beets, chayote, a little potato and turnip. (Ms. S, David's maternal grandmother)

In the paraphrastic movement of this speech, we can see the importance given to the diversity and alternation of food offered to the child in order to meet their nutritional needs.

In this regard, it is known that the human species requires a diverse diet to ensure healthy nutrition, and that the consumption of a variety of foods in adequate amounts is essential for the growth and development of children. Ingesting a diverse diet requires, besides the availability of food, the formation of eating habits¹³.

Also related to the specific care with alternating food, caregivers addressed the procedures they have adopted to offer the types of meats.

In a day, meat, muscle, in another day, chicken, always alternating; when it's fish, we have to give that day, we cannot put too much nor store it, that's how I do. (Ms. F, Eve's maternal grandmother)

We always put greens, spinach, kale, watercress, [...] different type of greens. (M.s S, David's maternal grandmother)

In the penultimate fragment, it is evidenced, besides the concern with alternating in offering different types of meat to the child, specific care in offering and keeping fish, as it is known it is a type of food that easily taints.

However, the last speech, by bringing the expression greens, referring to vegetables that are offered to children, shows the vocabulary cultural universe of the subject, in which a set of words belonging to the vocabulary of a certain group of people, i.e., words the group knows and uses on its real and concrete world, is manifested by the existential sense in which that word is enunciated, so, full of meaning, implicit in the situation presented ¹⁴.

When asked about the reason for offering the greens, the family member responds:

Because the doctor recommended to her [David's mother]. The doctor of the health unit told us to give soup for him this way, always putting a spinach, cabbage, kale, watercress, [...]. He always eats something different so that he can be stronger! (Ms. S, David's maternal grandmother)

It is evident that, for these family members, offering the greens, besides being one of the strategies used in the feeding practice, is also one of the possibilities re-signified by them to the child grow strong and healthy.

In addition, in the process of introduction of complementary feeding for infants, studies with mothers from Southeast of Brazil show their perception about the nutritional value of foods like red meat, chicken, fish, legumes, vegetables, and also rice and beans¹⁴.

The supply of other foods, which would increase the nutritional intake of children, emerged in the discourse of one of David's relatives. Influenced by the people's voices and by the beliefs about the nutritional value, she said:

I buy Danonino ^TM, not every day; we do not give it every day, but every other day we give a Danonino ^TM for him, because they say it [Danonino ^TM] is very strong, it's not good for him to eat every day. (Ms. K, David's mother)

The decision of this mother to offer the Danonino^TM, on alternate days is based on the naive logic of common sense, making it a polyphonic discourse, fed back by other people's discourses, without critically reflecting on their own actions.

The media, by pointing out that the Danonino ^TM is ideal for children, rich in nutrients, especially calcium, tries to reach the collective unconscious, interfering in their choices. So, that food becomes signified by mothers as a good food because of the manufacturer's warranty that it contains essential vitamins to infant growth¹⁵.

Goat's milk is another food introduced into that child's diet in order to ensure him greater nutritional support, resulting in a positive assessment of his weight gain.

He receives the milk. The pastor of the Church gives it to him, he brings from Saracuruna because there are a lot of goats there, [...] we have to put a little water in the goat's milk because it is very strong. [...] Because we think he is very skinny and we would like to see him chubby [...] But he [David] was very thin [...] now that he began to take goat's milk and the doctor said he had gained some little grams. (Ms. S, David's maternal grandmother)

In addition to contributing to increase the nutritional intake of children, goat's milk consumption entailed the involvement of other people in their social life, as the acquisition of this food involves a higher cost for the family and therefore the donation by the pastor of the church was the resource used to introduce that food they consider important for his growth. Also, the evaluation of the baby's weight by the pediatrician was re-signified by his grandmother as a positive factor, besides being the driving force to continue offering goat's milk, a care that promotes a healthier life for the child.

Referring to such practice in infant feeding, there is lack of knowledge and many beliefs in relation to that food, even though the goat's milk is considered of great nutritional value and has high digestibility. In a comparative study, which aimed to recover malnourished and hospitalized children from 1 to 5 years old using cow's milk or goat's milk, it was observed that the two types of milk have similar nutritional characteristics¹⁶.

Foods that facilitate intestinal transit were also present in the feeding practice of the families:

Sometimes when he [David] is constipated, we [the grandmother or the mother] cook plum, beat plum along with the syrup and with something different, with yogurt, we do that thing [shows gesture of mixing] and give it for him to evacuate because sometimes he gets constipated and then we have to help. He takes vitamin with papaya, he takes vitamin with pear. (Ms. S, David's maternal grandmother)

The child carrier of encephalopathy has associated disorders resulting from cerebral insult, among them, there is constipation. Chronic constipation can occur due to scarce fiber and liquids intake, reduced physical activity, use of medications such as antacids and certain antiepileptic drugs. The dietary management, i.e., the greater fiber intake, combined with the training defecation habits are important if the colon is not yet dilated.

Thus, maintenance treatment involves fundamentally the adoption of food scheme rich in fiber and depending on the child's age, foods such as beans, peas, lentils, corn, coconut, vegetables, fresh and dried fruits, rolled oats and black plum should be included or increased in daily consumption¹⁷.

Family care practices for feeding of children with encephalopathy

When reporting their care practices relating to food, two of the participating families also had a technological care, since their children had gastrostomy.

So you said that you beat his soup, filter it, and then? [Researcher]

Then we [the mother and the grandmother] give him. We put on the probe. (Ms. K, David's mother)

I put [referring to put food volume in the syringe], she [Eve's mother] fits [the probe of button kit] there [in the button] and I hold it. (Ms. F, Eve's maternal grandmother)

By bringing in their speeches the need for diet administration by gavage, family members pointed to the complexity of care, as this practice involves the preparation of food in proper consistency to be administered by the probe, the handling of the device itself, as the gastrostomy by tube or button is not part of the daily lives of families, and the need for two caregivers to carry out a practice that should be simple, that is, feeding their child.

In this sense, taking care of these children is a challenge for these families because they require numerous knowledge and practices that are unusual for the daily care of children in general.

Another aspect of the infant feeding, mentioned by caregivers, referred to the positioning of the infant during feeding:

There is also the position [the mother shows the position with the child sitting on her lap and representing the grandmother putting the diet on the syringe], sometimes she pushes [has muscle spasms], the rubber [probe button kit] looses, falls, they taught me that way [referring to the positioning]. (Ms. D. Eve's mother)

The reference to the position adopted to feed her daughter by gastrostomy evidenced the additional difficulty that this practice imposes on family caregivers, since muscle spasms resulting from the child's neurological condition enable externalization or loosening of the probe, causing a new challenge related to this practice.

In addition, other care refers to the risk of aspiration. To prevent it, we recommend the adoption of positioning with upright trunk in Fowler or semi Fowler position as change in usual care to meet the special health needs of the child, who has risk factors for this complication during the feeding ¹⁸.

The supply of food by mouth, with the objective of providing additional stimulus to the child that feeds by gastrostomy, was one aspect brought by the family members of a patient:

He always eats Danonino ^TM. When it is not Danonino ^TM, it is gelatin. Gelatin is more difficult to give because gelatin is more ... sometimes I do it tougher. Sometimes he spits out, we put (in David's little mouth), he spits out again. But he likes, he likes sweet things when we put in his mouth. [...] Then we do so, we give on the spoon. He can eat! (Ms. S, David's maternal grandmother)

In the latter discursive fragment, it became clear that providing food to children orally requires, by family members, the adequacy of food consistency: creamy (Danonino ^TM) or gelatinoous (gelatin), and it requires repeated attempts for the child to accept food and different strategies, such as offering foods the child likes best.

From the perspective of the child with gastrostomy, it is important to understand the effects of gastrostomy feeding for children with encephalopathy and that this understanding involves the family's decision to accept or not the use of this device for their child.

The prescription of gastrostomy occurs when these children already have clinical complications such as recurrent pneumonia and malnutrition, which relatively or absolutely contraindicates oral feeding. However, for the oral feeding can be restored, it requires a specific therapeutic strategy programming that includes choosing the type of food to be given and/or planning the rehabilitation treatment, performed by a speech therapist¹⁸.

Although the study presents limitations such as small number of families, which prevents the generalization of the findings, the daily life of the family members in the practice of feeding the child with encephalopathy revealed much more than the conduct of everyday life. Their usual conducts expressed their beliefs and attitudes toward care with feeding of their children.

CONCLUSION

The family members' speeches made it possible to scale the feeding care with children with encephalopathy in the home context, noting that such care requires a related adjustment to individual demands.

The types of food, the diversity, the complexity of feeding the child with gastrostomy, the position during feeding and the provision of food by mouth to the child with gastrostomy emerged as challenging issues for families, unveiling the necessary modifications in relation to this care including the safe provision of food.

The care to diet also involved the management of technological devices, requiring the acquisition of information and expertise of the family members to deal with this fundamental technology for the maintenance of their children's lives, evidencing, thus, the complexity of care.

Faced with the multitude of possibilities related to the care of the diet provided by the families that participated in the study, we notice the need for nursing professionals to develop their educational role guided in dialog and in horizontality, facilitating the relationship with the family members to the benefit of the child and favoring the coping process of the situation by families.

Thus, the nurse should mediate pros and cons of the choices required in CSHCN feeding process, developing skills to understand the family as a customer of care, understanding the effects and implications of these special needs, intervening along the trajectory of these families, reinforcing their potential and recognizing their weaknesses in order to minimize the anxieties concerning the difficulties presented by children.

REFERENCES

1.Svedberg LE, Englund E, Malker H, Stener-Victorin E. Comparison of impact on mood, health, and daily living experiences of primary caregivers of walking and non-walking children with cerebral palsy and provided community services support. European J Paediatr Neurol. 2010;14:239-46.

2.Herzer M, Godiwala NBS, Hommel KA, Driscoll K, Mitchell M, Crosby LE, et al. Family functioning in the context of pediatric chronic conditions. J Develop Behavior Pediatrics. 2010; 31:26-34.

3.Dantas MSA, Pontes JF, Assis WD, Collet N. Facilidades e dificuldades da família no cuidado à criança com paralisia cerebral. Rev Gaúcha Enferm. [online]. 2012 [citado em 07 fev 2015]; 33: 73-80. Disponível em: http://www.scielo.br/pdf/rgenf/v33n3/10.pdf

4.Baltor MRR, Dupas G. Experiências de famílias de crianças com paralisia cerebral em contexto de vulnerabilidade social. Rev Latino-Am Enfermagem [online]. 2013[citado em 22 mar 2015]; 21:956-63. Disponível em: http://www.scielo.br/pdf/rlae/v21n4/pt_0104-1169-rlae-21-04-0956.pdf

5.Santos ND, Thiengo MA, Moraes JRMM, Pacheco STA, Silva LF. Rev enferm UERJ. 2014; 22:65-70.

6.Godim KM, Pinheiro PNC, Carvalho ZMF. Participação das Mães no Tratamento dos Filhos com Paralisia Cerebral. Rev Rene. 2009 [citado em 03 abr 2015]; 10: 136-44. Disponível em: http://www.repositorio.ufc.br/bitstream/riufc/4393/1/2009_art_kmgondim.pdf

7.Carvalho APC, Chiari BM, Goncalves MIR. Impacto de uma ação educativa na alimentação de crianças neuropatas. CoDAS [online]. 2013 [citado em 10 mar 2014]; 25: 413-21. Disponível em: http://www.scielo.br/pdf/codas/2013nahead/aop_108_13.pdf

8.Freire P. Conscientização: teoria e prática de libertação. 3ª ed. São Paulo: Centauro; 2001.

9.Leite NSL, Cunha SR, Tavares MFL. Rev enferm UERJ. 2011; 19:152-6.

10.Müller EB, Zampieri MdeFM. Prática educativa com enfermeiras visando o cuidado humanizado ao recém-nascido no centro obstétrico. Texto contexto-enfermagem. 2014 [citado em 07 mar 2015];782-90. Disponível em: http://www.scielo.br/pdf/tce/v23n3/pt_0104-0707-tce-23-03-00782.pdf

11.Cabral IE. O método criativo e sensível: alternativa de pesquisa na enfermagem. In: Gauthier JHM, Cabral IE, Santos I, Tavares CMM. Pesquisa em enfermagem: novas metodologias aplicadas. Rio de Janeiro: Guanabara Koogan; 1998. p.177-208.

12.Orlandi EP. Análise de discurso: princípios e procedimentos. 10ª ed. Campinas (SP): Pontes; 2012.

13.Ministério da Saúde (Br) Saúde da criança: nutrição infantil: aleitamento materno e alimentação complementar. Brasília (DF): Editora MS; 2009.

14.Salve JM, Silva IA. Representações sociais de mães sobre a introdução de alimentos complementares para lactentes. Acta Paul Enferm. 2009; 22: 43-8.

15.Correia MHS. Práticas e crenças maternas relacionadas à alimentação complementar de crianças no primeiro ano de vida. Goiás [tese de doutorado]. Goiania (GO): Universidade Federal de Goiás; 2009.

16.Ribeiro ELA, Ribeiro HJS de S. Uso nutricional e terapêutico do leite de cabra. Semina: Ci. Agrárias (Londrina). 2001; 22: 229-35.

17.Morais MB, Maffei HVL. Constipação intestinal. Jornal de Pediatria. 2000; 76: 147-56.

18.Susin FP, Bortolini V, Sukiennik R, Mancopes R, Barbosa L R. Perfil de pacientes com paralisia cerebral em uso de gastrostomia e efeito nos cuidadores. Rev CEFAC. 2012;14: 933-42.