ORIGINAL RESEARCH

Hospital discharge in children with special health care needs and its different dimensions

Fernanda Garcia Bezerra Góes^I; Ivone Evangelista Cabral^II

^I Adjunct Professor, Department of Nursing, Fluminense Federal University. Rio das Ostras, Rio de Janeiro, Brazil. E-mail: ferbezerra@gmail.com
^II Full Professor, Maternal and Child Department, Anna Nery School of Nursing, Federal University of Rio de Janeiro, Brazil. E-mail: icabral444@gmail.com

DOI: http://dx.doi.org/10.12957/reuerj.2017.18684

ABSTRACT

Objectives: to unveil discursive and social practices of health professionals and family caregivers about hospital discharge of children with special health care needs. Method: qualitative study in 2013, with six health professionals and eleven family caregivers, at the inpatient unit of a federal pediatric hospital in Rio de Janeiro, after approval by the institution's research ethics committee (CAAE: 01504512.2.0000.5264; Report No. 39272). Semi-structured interviews were used together with dynamics of the Creative-Sensitive Method. Critical discourse analysis was applied. Results: discharge was revealed to comprise three types: clinical-administrative, procedural and social. There was found to be fragmentation among professionals' role in discharge. Conclusion: in order for there to be continuity in care at home with autonomy, security and quality, it is necessary to construct an discharge process that is interdisciplinary, dialogic and guided by the need for comprehensive care.

Keywords: Child; nursing; patient discharge; comprehensive health care.

INTRODUCTION

The infant mortality rate in 2000 was 29.7 per thousand live births, with a drop to 15.6 per thousand live births in 2010¹. In this scenario, advances in knowledge, care and technology in infant and neonatal health, which have even interfered with fetal viability, have led to the survival of children with more complex health problems, including children with special health needs (CSHN)².

Such children have chronic problems, whether physical, developmental, behavioral or emotional, and demand a greater use of health services ³, besides requiring their families to learn of a series of new complex and continuous care measures to ensure the minimum living conditions in the socio-family environment^4-6.

In Brazil, this child group has remained invisible in official statistics. A study with 1,355 children aged from 29 days to 12 years admitted to two intensive care services in Rio de Janeiro found that 6.3% of the children had been discharged with some post-hospital therapeutic need, thus being considered CSHN, and that 74.2% of these children needed long-term therapy ⁷.

However, the Brazilian epidemiological situation, which is characterized by a large incidence of chronic conditions, including those affecting CSHN, cannot be adequately addressed by a fragmented, reactive, episodic health care system focused primarily on treating acute conditions and exacerbations of chronic conditions⁸. Furthermore, these children are more often taken to referral hospitals for their continued treatment than to the health services available in the community.

Learning to manage the technological, medicament, developmental and customary care of CHILDREN⁷ during the hospitalization period is a challenge for Brazilian families.

International recommendations have stressed the understanding of the hospital discharge of these children as a process and an institutional care policy, requiring planning of discharge and adequate preparation of the relatives by the health institutions^9-14. However, institutional strategies to transform public policies into actions are still incipient in Brazil. In fact, there is a shortage of scientific productions on this issue. Thus, the present study aimed to unveil the discursive and social practices of health professionals and family caregivers related to the hospital discharge CSHN.

THEORETICAL FRAMEWORK

To understand the discharge of CSHN in its different dimensions, this study found theoretical support in the concept of integrality¹⁵, which is a way of indicating desirable characteristics in the health system and its practices, reflecting the desired direction to be taken in order to transform reality.

In its different dimensions, the concept seeks the refusal of reductionism, of objectification of individuals and the opening to dialogue, in the moment in which integrality is taken as a guiding principle of the practices, the organization of work, or of public policies^15,16.

In the perspective of integrality, health professionals should not reduce a subject to the disease that causes him suffering. On the contrary, they should take into account, not only knowledge about diseases, but also about the ways of living of those with whom they interact in the health services. This implies building individualized therapeutic projects from dialogue and negotiation between health professionals and users of the health services ¹⁶, which is in line with what is necessary for the hospital discharge of CSHN.

METHODOLOGY

This is a qualitative research developed at the inpatient unit of a pediatric federal university hospital in the city of Rio de Janeiro in the year 2013.

We chose to conduct semi-structured interviews with six health professionals, one from each professional category, who provided direct assistance to the hospitalized children and who had been at least three months in the unit. The professionals included were a social worker, a nurse, a physiotherapist, a physician, a nutritionist and a psychologist.

The data of the interviews were conjugated with the Dynamics of Creativity and Sensitivity (DCS) Knowledge and Body and Line of Life of the Creative and Sensitive Method (CSM)¹⁷, developed with 11 family caregivers of CSHN aged between 29 days and 12 years, who presented one or more of the care demands⁷ and who were hospitalized.

In the CSM, group discussions made possible by the presentation of artistic productions generated in the DCS are developed in a dialectical perspective, based on critical-reflexive pedagogy¹⁷.

The DCS Knowledge and Body aimed to awaken families to represent in a drawing of a body the care they were learning and/or performing during hospitalization to care for their CSHN at home. The DCS Line of Life aimed to relate the process of caring for their children in the continuum of life of the family caregivers.

The data produced were submitted to the Norman Fairclough's Critical Discourse Analysis (CDA)¹⁸, as this analysis represents as an adequate method to understand the relations between language and social practice.

In the data analysis, after transcription, the linguistic materiality of the statements of the subjects was examined¹⁹. Subsequently, analytical boards were created for each interview and each DCS and for each dimension of the three-dimensional model of the CDA, namely: textual (descriptive) analysis; discursive (interpretative) analysis; and analysis of social practice (explanatory)¹⁸.

The movement of immersion and impregnation in the empirical material pointed to the discursive regularity, consistency, consistency and coherence of the statements of the subjects about the discharge of CSHN in its different dimensions. From this perspective, the theoretical saturation criterion²⁰ was used to end the field work.

The analysis of the data gave raise to three orders of discourse that are organized as the categories of the study: the institutional discourse order, the professional discourse order, and the social discourse order. The project from which the present study stemmed was approved by the Research Ethics Committee of the institution (CAAE: 01504512.2.0000.5264; Opinion n. 39272) and all the participants signed the Informed Consent Form. The reports of the professionals were identified by the letter P followed by the sequential number of the statements and those of the relatives by the letter F also followed by the sequence number.

RESULTS AND DISCUSSION

The research participants gave multiple voices and different orders of speech¹⁸ in its statements, revealing, thus, the multidimensionality of the discharge of CSHN.

The institutional discourse order

First the doctor [...], who schedules everything. (P1)

I try to gather some information, to gather the professionals [...] to release that bed, so that there is no longer that chronic patient in the ward. (P2)

The scheduling by the doctor gives rise to the clinical-administrative discharge in the hospital, as this professional assumes a central and determinant role in the actions of other members of the health team.

Similar data were found in a study in which nurses acknowledge that the discharge is routinely organized and subordinate to medical decisions ²¹. According to this logic, the professional care triggered by the discharge is centered on one professional and this hinders the collaborative care performed by multiprofessional teams, children and families.

Nonetheless, the integrality of care will not be achieved exclusively or predominantly by doctors, but by a joint action of all professionals involved in care^15,16.

They try to stabilize the child as much as possible [...] to send her home. (P3)

We [the health team] go in shifts and check if that child is already in perfect health. (P4)

In the rounds, we have discussed the clinical pictures. [...] But, we [social service workers] are not able to participate in the rounds every day. (P5)

The clinical discharge of CSHN is based on the round and in an inter-professional manner; however, this space for dialogue does not count on the daily participation of all members of the health team, neither includes the participation of the families. Moreover, it is based on the resolution of the acute condition of the chronic disease through its clinical stability. However, chronic conditions need to be managed through a programmed and constant attention, and not only in a reactive and episodic manner⁸.

A study developed in UK also explains that planning the discharge of these children is time-consuming and may have low priority in a busy working environment, which impacts on their own quality²². However, integrality must emerge as a principle for the organization of the work process, characterized by the continuous search for expansion of possibilities of coverage of the client's more comprehensive needs ^15,16.

At discharge, there is a need for mothers to take on this care, and they must be trained and driven towards autonomy. (P6)

We start counseling one week before discharge. (P4)

When the mother is confident, the discharge is completed. (P1)

There is no standardization. So they do not learn to do the procedure properly, because each one does it in a different way. (P2)

The social practice of discharge is marked by the preparation of the mothers, but not of families, based upon the expectation of discharge, so that these women be able to continue to care for their children at home. There is a belief that this preparation makes mothers fit and autonomous for the maintenance of care away from the hospital. However, there is no standardization of this preparation in the institution, which influences its own resolutivity.

Although information and health education are part of the process of building the autonomy of each person, but they alone are not enough ²³. Furthermore, evidence has indicated that the planning of discharge and the preparation of the families of CSHN must be started since the admission of the child^{11,12,14,21,24}, because the guidelines given at the moment of discharge may cause caregivers to assume the care automatically, without questions or doubts, compromising their safety and quality²¹.

They try to tie the discharge. [...]. She's already forwarded to the specialized clinic. [...] But, these chronic children [...] will return. Give any name you want, yo-yo child, boomerang child. (P3)

Using metaphors, this professional reinforces the sense of maintaining the bond between the families and the hospital, when he says that, after the discharge, CSHN always go home but return to the hospital later on.

If on the one hand the discharge can favor the creation of autonomy of the CSHN's mothers, on the other hand, it limits their independence by maintaining a lasting link with the institution without the due continued and proactive attention to the child in the primary care services ⁸.

There are a small number of professionals, [...] everyone with at least two or three roles. (P3)

Sometimes the professional fails to notice [...] some words that are imprinted in the [mother's] gaze, the affliction, and it goes unnoticed, [...] because the professional is involved with so many things. (P6)

You have to make it, take care not of one infirmary only, but of several wards, the ITC, emergency, in-patient unit, [...] you end it up very immediately. (P5)

The professionals feel overwhelmed by the having to work in different functional units, by the involvement in numerous activities that prevent them from dedicating more carefully to the discharge of CSHN. These aspects compromise the access of these children and their families to the various sets of knowledge and practices of the multiprofessional team.

Thus, the integrality of care is compromised by the difficulty to conclude the care and give the best possible resolution to the health problem the person is experiencing, according to the current knowledge available able to improve and prolong life²³.

The professional speech order

On the moment of discharge, each one has its own role. (P5)

It is all very segmented within each sector [...], a large hiatus in multidisciplinary care. I do not see frequent training in the ward regarding preparation to discharge. (P2)

My schedules do not match the nursing guidelines. [...] With the social worker, I do not have much contact. (P3)

The tracheostomy, each [member of the nursing team] did it differently, and I put it my way. [...] The same for bathing in bed. (F1)

The procedural discharge was evidently segmented, fragmented and separated by sectors. The actions of professionals are particularized, with little integration with other team members. Such a way of acting favors the maintenance of a gap in the multidisciplinary care and reveals the absence of coordination and of a discharge team.

The logic of this type of activity, centered on the professional, through the technical and social division of labor, results in disjointed and fragmented actions that do not contribute to an interdisciplinary work and limits the construction of integral practices^15,16,23.

A study on ostomized children also showed that the discharge is seen as the execution of specific attributions of each professional category in an isolated way, limiting a true articulation of the diverse practices ²⁵.

However, the importance of an articulated and integrated performance of a multidisciplinary team has been postulated in the discharge plan of CSHN in order to provide a specialized and individualized plan for each patient ^9,13,25.

I participate directly in the preparation of mothers for tracheostomy or gastrostomy [...], a week or two before going home. (P1)

The nurse acts by guiding the care with gastrostomy and tracheostomy. (P3)

Nurses [...] teach how to provide care (making reference to gastrostomy). (F2)

The participation of nurses was clearly evident in all the narratives of the participants of the research. Their role as educators of family caregivers in the procedural discharge was emphasized. It is worth emphasizing that in the whole set of health care measures, in the hospital, nurses have had the social role of educators of the families of CSHN, mainly as mediators of the learning of technological care²⁶.

In the polyphony of voices, other health professionals also stood out in the procedural discharge of CSHN, despite minor discursive recurrences.

The doctor participates guiding on that strict medication for discharge. (P2)

The medical staff, [...] the issue of the disease [...] to be able to continue the treatment. (P6)

Physical therapy mainly focuses on the use of technology [...]. Tracheostomy, [...] how to carry on the lap, put in the bed, forms of stimulation, [...] wheelchairs, and orthoses. (P3)

The physical therapy that [...] does the aspirations and the mother is there looking. (P1)

The physical therapist taught me how to walk and hold my son. (F3)

The repertoire of guidelines on procedural care at discharge performed by the physical therapist was related to technological, pharmaceutical, developmental and customary demands⁷, reinforcing the sense of complexity of care for CSHN. This way, family caregivers need to incorporate different knowledge sets and practices to continue caring for their children at home.

The psychologist acts as a mediator. [...]. Sometimes the mother [...] receives medical advice, [...] in a little more elaborate language, and she gets ashamed of asking about her doubts. She writes down on the paper on her way and she shows us. (P6)

In the case of families who reject the possibility of a gastrostomy or tracheostomy, we present the benefit of these procedures. (P5)

I saw the psychologists because I really freaked out when I saw the suction [the tracheostomy], very bloody, watching him [the grandson] at unease. (F4)

Psychological intervention in procedural discharge is important when the family rejects the possibility of a gastrostomy or a tracheostomy. The psychologist explains the benefits of installing these technologies in the child's body. They are also important when the family does not understand a clinical instruction. However, the role of this professional little reverberated in the voices of other professionals.

My nutritional guidelines are all given in written form, from the purchase of food to the preparation, the time, quality, hygiene and preparation of the manipulator. (P4)

As for the nutritional part, some children who have very specific nutritional needs are referred to the outpatient clinic for diabetes, in the nutrition clinic. (P3)

The nutritionist had the least recurrence in the discursiveness among all the participants of the research. He did not even explain the practices of the other professionals in his statements.

Thus, it is evident that all the components of the multidisciplinary team are necessarily essential in the procedural discharge. However, the actions happen most of the times in a individualized way, and conducted by different services.

In the scope of integral care, professionals cannot be restricted only to their specific technical skills and tasks. There must be space for negotiation and inclusion of the knowledge, desires and demands of other parties²⁷ (professionals and families).

As a matter of fact, the biomedical health care model is the guiding ideology of these discourses, reflecting a social practice of discharge primarily focused on the disease, technology and procedures rather than on the overarching care for the health needs of CSHN and their families, as also evidenced in a study on chronic child care²⁸.

The social discourse order

Children who are dependent on oxygen or on peritoneal dialysis always take much longer to leave, [...] because they have to get in contact with the Health Department. (P2)

They do not get [...] medicines, equipment and supplies: bottons, diapers, gauze, syringe and distilled water. [...]. So, it will depend on a process filed with the Public Defender's Office, which is very slow. (P5)

In the social discharge, it was verified that the length of stay in the hospital of children with complex demands is influenced by the conformation and obstacles of the health and legal assistance to meet their demands, insofar as the State has not promptly guaranteed the legal rights of the children to receive the materials and the necessary equipment for the maintenance of the care. Thus, it is necessary to seek the Public Defender's Office, whose respond is sometimes time-consuming.

On discharge, I participate precisely in this contact with the [health] team, identifying what, in social terms, could contribute to this process. (P5)

In order to obtain the necessary materials and, when possible, some financial assistance for that child. (P2)

Thus, the social worker gains visibility in the social discharge, precisely because he assumes a central role in mediating with the public authorities, to meet the rights of children and their families.

A research also showed that although there are legal provisions that ensure the rights of CSHN in Brazil, the reality is that family members often have to go through a true pilgrimage to guarantee them. Sometimes they need to go after court rulings to ensure the proper treatment of their children, what indicates the social vulnerability of these children^25,29.

The child has the right, but there is no regulation [...] that will actually be provided, either by the Municipality or the State and often the institute ends up assuming the supply of these materials. (P5)

They gave me all the necessary materials until the homecare left. (F4)

But it is a complex process; there is no flow in this aspects, and sometimes the child gets here and we do not have it. (P2)

This discursive chain reveals that, given the absence of immediate guarantee by public authorities that the rights of the CSHN will receive the supplies related to their care free of charge, the hospital seeks to provide them, aiming at the release of beds.

If, on the one hand, the supply of materials by the hospital releases beds to meet the needs of the Unified Health System (SUS), on the other hand, it generates a problem for families in the post-discharge period. This is because, as there is no assurance of continuous provision by the institute, the family starts to pay for biomedical materials and devices. Such expenses can have a negative impact on the continuity of with quality and safe home care.

This is an poorly planned discharge. [...]. These children return to the hospital because there is no support on the part of the network. (P3)

There is no referral and counter-referral. [...] The network ends up determining that the patient belongs to the institute and always wants to send him here. Something that can be solved close to their home at some times. (P2)

There is a sense of dependency of the CSHN and their families on the hospital even in the post-discharge period because the path for these people to be cared for in the health services of their community seems to be planned. Thus, they need to go to the hospital in the face of any adverse event, failing to emancipate. It can be seen that the fragmented and dispersed health service network has not provided continuous follow-up and comprehensive care to these people.

This form of action of the health system is reactive and episodic, and driven in most cases by the demand of the families themselves, when a problem comes up. There is no proactive and continuous intervention in the primary health care⁸. This disarticulation of the network at the discharge of CSHN was also signaled as a fragility for integral care in a study carried out in the Southern Region of Brazil³⁰.

CONCLUSION

The objective of the research was achieved by typifying the hospital discharge of CSHN in three different directions: clinical-administrative discharge, procedural discharge, and social discharge.

Non-institutional and disarticulated practices were unveiled, with a health care focused on the preparation of mothers through prescriptive and punctual instructions directed to the disease and to the procedures given close to the moment of discharge and always coming from the professionals.

It was found that the discharge is dependent on the health and legal assistance of CSHN and their families, as there are obstacles in the State regarding the availability of resources necessary to maintain the care of these children at home. In addition, flows between health services in the SUS are not adequately established.

Therefore, it is urgent to implement a consistent discharge process that involves interdisciplinary work, coordinated by a discharge manager so as to ensure the integrated and articulated participation of professionals and families and the integrality of care.

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