ORIGINAL RESEARCH

Models of care for families of technology-dependent children in a hospital context

Cristiane Santos da Silva Siqueira^I; Adriana Teixeira Reis ^II; Sandra Teixeira de Araújo Pacheco^III

^I Master's degree in Nursing. State University of Rio de Janeiro. Rio de Janeiro, Brazil. Email: ane.cris@yahoo.com.br
^II PhD. in Nursing. Adjunct Professor, Department of Maternal and Child of the State University of Rio de Janeiro. Brazil. E-mail: driefa@terra.com.br
^III PhD. in Nursing. Adjunct Professor, Department of Maternal and Child Nursing of the State University of Rio de Janeiro. Brazil. E-mail: stapacheco@yahoo.com.br
^IV Article derived from the monograph: The role of the nurse in the reception of the family of technology dependent children (2012).

DOI: http://dx.doi.org/10.12957/reuerj.2017.27529

ABSTRACT

Objective: to describe models of care for families of technology-dependent children in a hospital context, on the basis of nurses' statements. Method: qualitative, descriptive study at a federal institution in Rio de Janeiro, with eight nurses. Data were collected by interview from September to October 2011 and processed by content analysis. The study was approved by the research ethics committee (CAAE 0050.0.008.000-11). Results: nurses focus on care based on hard technology and still centered on the biological model. However, they regard family members as important to maintaining the children's emotional balance. Conclusion: the results showed children must be understood as citizens and to integrate the family as an extension of care by listening attentively to their needs.

Keywords: Adolescent; transplantation; oncology; pediatric nursing.

INTRODUCTION

The increase in technological knowledge has brought a significant advance in scientific knowledge, contributing to improved practices in health care, resulting in the possibility of children with special health needs surviving, including those with congenital malformations, and chronic or genetic diseases ^1,2. Technology-dependent children (TDC) are those who need some technological device to repair the loss of a vital function of the body. They need daily nursing care as well as these devices to avoid death or deterioration of their disability ³.

Children who require specialized care, such as TDC, need the affective contact of the family which provides a safe and familiar environment and prevents social isolation, which can negatively affect their growth and development ^4,5.

Therefore, it is essential that nursing acts to include family members in the care process of these children, building a relationship of respect, commitment, empathy and dialogue, which must include attentive listening, reflection and attitude, thereby promoting family-centered care and contributing to the recovery of the child ^6,7. Interest in developing the present study arose in view of this as it is believed that sharing care with family members will humanize it and strengthen the mother-child bond.

Thus, the objective of this study was to describe care models for families of TDC in a hospital setting based on the discourses of nurses.

Family-centered care, particularly in pediatrics, requires a health professional who knows how to listen and respect the choices of the child and his/her family according to their knowledge, values, beliefs and cultural background. The family should be included and encouraged to participate in the care and decision-making process, thus giving voice to family members ⁸.

THEORETICAL REFERENCE

This study used the theoretical-conceptual framework of Elsen and Patrício, which lists three types of models/approaches to care for hospitalized children: centered on the child's pathology, centered on the child and centered on the child and his/her family ⁹.

The care approach focused on the child's pathology focuses on the child with a disease who presents signs or symptoms that need to be treated by health professionals. In this model, the family occupies a minor position and communication between the team, child and family tends to be vertical; it is up to the health professionals to inform the family when and what they deem necessary ^10,11.

The child-centered approach to care is essentially about individual characteristics. The patient is seen as an individual who is growing and developing and the child's habits and customs are respected. In this model, the mother or a close family member is encouraged the stay in the hospital and should report issues concerning the child and the involvement of personal objects. Decision-making continues to be of the professional, although family members are kept up to date. Together, they discuss the expected results ¹⁰.

Child and family-centered care is an approach that recognizes the importance of family members in caring for their child in terms of emotional, social, and developmental aspects. The health professional should care for the child as well as the family in its entirety and not only in biological aspects. The advantages of this model show that as the child and family are participants from the moment of hospitalization, the hospital environment loses its hostile atmosphere, becoming a place of treatment and learning ^4,12.

METHODOLOGY

This is a qualitative, descriptive study carried out in a pediatric inpatient unit of a federal government institution located in Rio de Janeiro, Brazil. Participants were eight nurses (the entire staff of the unit) identified by names of flowers thereby guaranteeing their anonymity. The following inclusion criteria were utilized: nurses who were specialists in pediatrics and who had a minimum of one year experience in the pediatric unit. Those who were on leave or on vacation during the interview period were excluded.

Data collection took place using semi-structured interviews conducted from September to October 2011. During the interviews, a script was used with closed questions that addressed characteristics of the graduation of the nurses and a guiding question: How do you provide care to families of technology-dependent children?

The interviews, lasting approximately 20 minutes and conducted by the lead author of this article, were scheduled at a specific time and date depending on the participants' availability. To ensure privacy and to avoid any interference of noise during recording using a digital recorder (mp3), interviews were carried out in a private room within the pediatric unit.

The interviews were recorded in full and analyzed according to the three phases of thematic analysis: pre-analysis corresponding to floating reading to know the content of the empirical material generated by the interviews, the material exploration phase, when raw data is transformed into units that represent meanings and then aggregated into categories and the treatment and interpretation of the results phase - It is sought at this stage, to highlight information available in the analysis, by simple quantification ¹³.

The present study followed the ethical recommendations listed in Resolution 196/96 of the Brazilian National Health Committee and updated by 466/2012 of the National Health Council ¹⁴, and the project was approved by the Ethics Committee of the institution (#0050.0.008.000-11 / 2011). Moreover, the objectives of the study were presented to the participants of the research, who signed a free and informed consent form.

RESULTS AND DISCUSSION

In order to guide the profile of the participants, characteristics of the training and the professional conditions of the interviewees were identified - all were specialists in pediatrics; 25% had 1 to 5 years, 37.5% had between 5 and 10 years and 37.5% had more than 10 years of experience in pediatrics.

The analysis of the set of interviews generated the following four categories.

The nurse as a professional who receives, listens to and prepares TDC for hospital discharge

The interviewees stressed that the presence of the family/companion is essential in the daily work of the team. At this moment, the nurse's role in receiving and guiding families within the hospital environment regarding the technological support required by the child is essential in order to prepare them for discharge ^15,16. Here are the discourses:

We need to bring this family close, not only the primary caregiver, who stays here in the hospital during hospitalization, but the whole family, so that there is an interaction, a better care for the patient/client. And then provide guidance for care after discharge, getting closer to this client. (Orchid)

These children have numerous devices that involve a specific need of the family for training, an education. So I deal with these families in training how to use this technology, in its maintenance, in the handling of the equipment, in the support with these technological devices. (Dalia)

It is believed that nurses, in their field of action, should be able to develop educational activities according to the needs of each individual and social group. Thus, in child care, health education is paramount, remembering that the process of all child care practices should involve a family member ^8,17.

This new reality is very frightening as parents often have a complex role at home, which is generally only performed by professionals in intensive care units. Therefore, guidance must be progressive, with caution and in a way that the people understand, so that they can deal with this reality in a less traumatic way ¹⁸. These are the testimonials:

I try to get closer to the child and the family, I introduce myself, I ask them how they are feeling, I try to understand their world a little and I'm doing the activities that are my responsibility, asking the family during the procedures, whether they have seen it being performed before and how they feel about performing the technique. (Sunflower)

When I establish a bond with the caregiver, I ask whether they want to do it with me by their side, supervising, I ask if they have any doubts, if so, I clarify, I show and I teach. (Sunflower)

When carrying out educational activities with the family, the nurse needs to give support, clarifying individual difficulties. In this sense, it is necessary to understand the care process of each child, in an attempt to be prepared to act in a humanistic way in relation to the quality of life of the patient and his/her relative/caregiver ¹⁹.

It is imperative that nurses make family members feel at ease, helping them in this new phase with the purpose of helping them to safely continue the treatment at home in order to avoid readmissions. The following discourses highlight these issues:

The relative is learning this because the care will continue at home, because by performing the right procedure in the hospital environment, the likelihood of readmission here is very low, by being careful there will be no need of returning for some complication. (Lily)

During hospitalization, we are accustomed most of the time to include the mother in the care process itself; we include her so that during hospitalization she can be prepared for home care, so that she provides quality care without endangering the child's life. (Hydrangea)

In this perspective, the nurse should offer these families support and a dialogue during this daily coexistence, helping them to understand and cope with this new reality, building attitudes together that may provide quality of life for the child at home. These families should be counseled with caution about the use and handling of technological devices, such as the prevention of infections; the importance of all caregivers and not just the mother should be stressed in respect to this arduous task ^2,20.

It is necessary that nurses can work with this child, helping him/her to overcome fears and concerns about the disease and the technological devices, because in the future the child will grow to be a teenager who will have to deal with all this technology and care independently. Here we see the importance of professional assistance in this new phase of life with emphasis on self-care, allowing the life of the adolescent to be closer to normal, as in the following discourse:

We must teach these children to live with the disease, so that they look after themselves. Because they are children, schoolchildren and teenagers who will one day return to student life, and much of this care will be carried out at school. (Rose)

Due to the use of certain technological devices and specialized care, adolescents will have to face several challenges in their daily activities. In this way, self-care is fundamental to respond to their individual needs. And these conditions require that some procedures are performed in public settings, so the nurse must promote educational programs with these adolescents, aiming to develop skills and abilities for self-care ²¹.

Care focused on the child's illness

In this category, the main objective is to recover the child's health through therapeutic procedures, valuing the family's involvement in the care because of the technological status.

I say something about the disease and there are relatives who are interested to know, who ask. And there are others who I have to call their attention, for them to be more present. (Daisy)

I like to focus on things at home in particular; it is him/her that will do the procedure, they have to know how to aspirate, if the cannula suddenly comes out in their hand, what will they do if the gastric tube comes out, if the gastrostomy button bursts? (Daisy)

It is observed that the discourse of the educational process involving the family is recognized, but the focus remains on biological aspects. Therefore, there is little dialogue between the nurse and caregiver, since mostly the professional is worried about technology and the family may be interested only in looking after their child using simple strategies. The focus of the educational process in the hospital does not take into account the needs of home care and nurses must adapt their discourse to the demands of the family ^10,22.

Care centered on the child and the family

In this category, it can be seen that nurses consider this partnership as important.

The treatment will depend a lot on this, this interaction between you and the family, because all your care of the child will be above the attention provided to the family, but also centered on the family. (Orchid)

We need to work not only with the child providing nursing care, what we try to do is to take in this mother and find a way that she can act without suffering. (Hydrangea)

When caring for and providing information about a family member, the professional should respect the family's culture, remembering that the continuity of this care depends on the beliefs of the family. In view of this, it is necessary for nurses to respect the individuality of the people who are part of the core family, which is the foundation of the care provided to the child and where the family finds its reference for life ¹.

It is important to remember that the family plays several roles in the care of hospitalized children. Faced with this critical moment, the family needs guidance, support and care. The nurse recognizes experience in these situations, as presented in the following discourse:

Some moments we are faced with mothers who are afraid, at first they are not familiarized to that reality, often some stay away from the hospital some days, because they do not want to accept the reality of the child. It is clear that life will change and reality as well, but that she will find [...] the means, with the help of the multiprofessional team [to find] a more appropriate way of dealing with that situation. (Hydrangea)

Facing the situation of a TDC can result in challenges greater than the usual parental responsibilities due to the specific demand for care that falls on the family. Parents experience a range of emotions, they need to incorporate unfamiliar knowledge and practices into their daily lives, and they face challenging care for the daily activities of their child. The home environment goes through adaptations with the presence of new equipment, whose value is incalculable in the development for the survival of this child, added to the toys and belongings ^8,23.

In order for care to be more effective, it is necessary to learn to listen, to touch and to speak with the other in a way that he/she understands. There are times when you have to pay attention, because sometimes a family member and the child are in need of a conversation or a friendly look at a specific moment, as exemplified by this discourse:

In order for the other person to actually listen, one must speak in a way that he/she understands, because we advise, the other professionals explain and the patient/family member cannot really understand what is happening. We have to learn to listen and to touch, because the difference of our care is to touch this patient in a different way and to show, because it is us that, in reality, are with the child the whole time. (Orchid)

Professionals should work to ensure that care is planned with the participation of the family, as all members are recognized as co-responsible. As the family is a constant in the life of this child, the professional must reduce the adverse effects of hospitalization and anxiety, promoting the bond between parent and child, recognizing that this group has the right to complete and comprehensive explanations regarding diagnosis and care ²⁴.

There are many challenges that need to be overcome by the family and nurses should support family members, offering some occupational and craft activities that promote a humanized environment and minimize the stress of both the child and the mother during hospitalization. Nursing staff recognize this situation, as can be seen with the following discourse:

I try to make her think about other activities so that she does not reach her maximum [tolerance] limit. Hospitalizing any child is difficult both for the mother and for all the other people who are involved because the woman stays away from home, away from her husband and children, and she is required to take on more and more activities that she is not accustomed to […] It is a hospitalization of the child and the mother at the same time. (Hydrangea)

The purpose of the multiprofessional team in caring for TDC is to enable and include this family in the care process and help them understand and learn how to deal with internal conflicts. The primary caregiver needs professional help and the support of the family because she is not able to provide full quality care alone due to the excessive number of activities; in attempting to provide this care alone, she may endanger the TDC and put the family stability at risk ¹⁹.

Relationship of families of TDC with the nursing staff

The category relationship of families with TDC with the nursing staff emerges as a positive point for the success of the procedure, with a beneficial maintenance of the relationship between the child, family and nursing staff. Here is the discourse:

I told both the mother and the father at that time, that their presence was very important, because the boy had already had several complications during the period of hospitalization [...] I told the family that they should have a little more patience, because what little he had done well was already a victory for both him and the family. I asked them not to be discouraged [...] Everyone thanked me for the support [...]I try to be encouraging always; when the mother and the father are discouraged, I go to them, I talk and I say that no matter how small the victory, it is a victory. (Lily)

It is imperative that care be extended to family members, as their participation is valuable in the child's care. Faced with these factors, respect and recognition of individuality are essential for planning specific dynamics according to the life history of each child, helping them to overcome the difficulties faced during this period of illness, with the possibility of restructuring to get passed this moment ⁴.

With regard to the relationship between the health team and the families of the children, there is still something very incipient. Dissatisfaction can be observed in the following statements:

The reception of the nursing staff is difficult for us over, 24 hours. Reserving a time for these mothers who are unnoticed, and at one time when she is stressed, when she has some conflict with another mother, with the child or even with the nursing staff, I try to see if at any moment we had left this mother alone and whether we need to review our concepts and try to see [...] the possibilities to conduct this fact in a less tense way [...] For the nurse to deal with the other is very complicated [...] The companion is difficult and we often end up inappropriately exchanging some feelings that were not to be expressed. (Hydrangea)

The nursing professional is with the family 24 hours of work that, and even so this relationship generates distance and conflict, disrupting the educational process and the understanding, which are primordial points for dialogue. Interaction is essential to benefit both. As the bond is built, the recognition of work, acceptance, trust, and interest in participating in care become evident. This is reflected by the active participation of family members, who interact better, bringing news about the situation of the child and, consequently, their experiences ².

CONCLUSIONS

The results present dichotomous facets present in the therapeutic relationship between the nurses and the families of TDC.

It is understood that the nursing staff, in theory, understands that the dimension of care for TDC goes beyond biological aspects and needs a comprehensive, child-focused approach. Professionals consider that family members are important to maintain the children's emotional balance and to keep them safe.

The perception of a view of care based on hard technology, pure and simple, and on biological features, thus focused on the illness of the child, is still present in the practice. It is necessary to demystify this view, since the current concept of health is much more comprehensive. Furthermore, the clinical picture already generates intense anxiety in the family. It is necessary to understand aspects related to the quality of life of this child and his/her family, and not only aspects aimed at maintaining life.

It is essential to see children, as well as their families, as citizens, each with their individual needs during the daily care of the child. It is important to promote a culture of attentive listening to the needs of the parents and to mold the care according to the demands they present.

In a context in which there is an increasing number of TDC due to the increasingly use of technology in pediatrics and neonatology, which allows the survival of children previously considered not viable, an adequate preparation for comfort and reception is of paramount importance thereby reducing the physical and emotional harm to children and their families. In this way, it is valuable to train humanization strategies during the reception of family members and within the approach to care used by the nurse, as one can be subjectively caring for the child and his/her family.

There were some limitations in this study such as the fact that it was performed in a single pediatric hospital setting, which prevents the generalization of the findings. Further studies are recommended in other pediatric settings of different hospital units, in order to provide a broader picture on this issue.

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