RESEARCH ARTICLES

Difficulties in effecting hospital reception at admission of children with chronic disease

Amanda Narciso Machado^I; Malueska Luacche Xavier Ferreira de Sousa^II; Maria Elizabete de Amorim Silva^III; Simone Elizabeth Duarte Coutinho^IV; Altamira Pereira da Silva Reichert^V; Neusa Collet^VI

^I Nurse. Nursing resident in Child Health at the Integrative Medicine Institute Professor Fernando Filgueira. Recife, Pernambuco, Brazil. E-mail: amandanmachado@hotmail.com
^II Nurse. Master in Nursing. Nurse at the Deoclécio Marques de Lucena Hospital. Parnamirim, Rio Grande do Norte, Brazil. E-mail: malu_luacche@hotmail.com
^III Nurse. Master student from the Graduate Program in Nursing. Federal University of Paraíba. Health Sciences Center. João Pessoa, Paraíba, Brazil. E-mail: elizabeteamorim.enf@gmail.com
^IV Nurse. Master in Nursing. PhD student of the Graduate Program in Nursing. Professor of the Undergraduate Nursing Course. Federal University of Paraíba. Health Sciences Center. João Pessoa, Paraíba, Brazil. E-mail: simonedc_3@hotmail.com
^V Nurse. PhD in Health of Children and Adolescents. Professor of the Graduate and Undergraduate Program in Nursing. Federal University of Paraíba. Health Sciences Center. João Pessoa, Paraíba, Brazil. E-mail: altareichert@gmail.com
^VI Nurse. PhD in Nursing. Professor of the Graduate and Undergraduate Program in Nursing. Federal University of Paraíba. Health Sciences Center. João Pessoa, Paraíba, Brazil. E-mail: neucollet@gmail.com
^VII Study funded by the National Council for Scientific and Technological Development, Universal Notice Process No. 475841 / 2010-7.

DOI: http://dx.doi.org/10.12957/reuerj.2015.5960

ABSTRACT

This qualitative study aimed to understand the difficulties encountered, as perceived by relatives of children with chronic diseases, in making hospital reception welcoming. Data were collected between February and March 2012, at a public hospital in João Pessoa, Paraíba State, through semi-structured interviews of seven family members, and were interpreted using thematic analysis. Salient difficulties encountered in achieving a welcoming reception to the hospital setting included: fragile relations among health professionals marked by conflicts caused by information deficits with regard to hospital routines and children's care; lack of dialogue and availability for members, which subjects the latter to the rules and routines of the hospital institution. Understanding the importance of a welcoming reception fosters sensitivity in health professionals and contributes to their qualified handling of child hospitalization.

Keywords: Welcoming reception; family; chronic disease; child health.

INTRODUCTION

Families that experience a chronic disease in childhood experience changes in their dynamics and changes in routine members¹. The hospitalization of a child^VII is a potentially stressful event as it brings several repercussions, such as the absence of the home, separation from family and friends, exposure to painful procedures and the imposition of sorrow². The family is the closest link of the child, with whom they can count to overcome the difficulties and to receive encouragement during difficult times, however, family members also experience the implications of chronic illness, sharing the same suffering.

In the care process, the sick child is the focus of attention of many health professionals, whereas the family member/caregiver/companion is seen as a helper, without being recognized as a person who is experiencing, together with the child, throughout the physical and emotional distress of the disease and, therefore, also needs attention, help and support³.

The presence of a family representative is essential because that is the person in whom the child will find the support needed to cope with the disease process⁴. However, their continued stay next to the hospitalized children is not an easy experience, since they need to submit to the deficit structural conditions of the hospital, in addition to emotional distress caused by the absence of the family and their home¹. Thus, both the child and their family require care needs that deserve attention from health professionals in hospital.

The family-centered care is a philosophy that has not only the child as a care focus, but the family unit as a whole⁵. The binomial child/family has experience, knowledge and perspectives that constitute them as subjects and can be essential to bring transformative change in health. Strategies that seek the establishment of a partnership are essential for change and improvement of care production⁶.

When informed and participating effectively in the care of children, the family will feel more welcome and less helpless during hospitalization. Conversely, a weakened bond between health professionals and family hinders the realization of the user embracement, leaving these individuals more vulnerable to the implications triggered by hospitalization, especially due to the hostility present in the hospital. Given this absence, the family may feel powerless, and there may be conflicts between them and the health team, relations of submission and acceptance of actions imposed by the service and its employees, which further complicates the care process, the health work and the effectiveness of user embracement.

Considering the negative impact that such events bring to those involved in this process, it is important to make efforts to build a comprehensive and qualified care, able to meet the unique needs of families and children, thus promoting the user embracement in hospital. From this perspective, the objective was to understand the difficulties faced for the realization of user embracement in the perception of family members of children with chronic disease.

LITERATURE REVIEW

The act of embracing does not mean solving all the problems presented, but the family has the opportunity to find help and support in the professionals. These should be accessible, perceptive, available and prepared to meet the needs reported by family members⁷. Thus, the user embracement will be present in all relationships and encounters that we make, and in the health services it only makes sense when in addition to the front desk, it is extended to all the care production process⁸.

In the search for health services, family members hope to find a space for communication, dialogue and sensitive and unique listening. The interaction in these moments between health professionals and family allows the expression of experiences, feelings, desires and resolution of doubts arising from the chronic condition of the child health⁹.

The health team needs to meet the family of the sick child in their uniqueness so they can identify their real needs and help in coping with difficulties ¹⁰. The user embracement in the hospital means to support the family, helping them to restore their physical, emotional and social integrity, which was shaken by the child hospitalization process, transcending the biological aspects. The appreciation of listening, of complaints, the respect for differences, the dialogue and the compliance to each family's knowledge, are characteristic of the user embracement. This way, there might be promotion of comprehensive care to children and their families during hospitalization.

When the user embracement is carried out efficiently, the family trusts in professionals and this makes the act of hosting becomes something rewarding for all involved, especially for the professional, which becomes a major source of support for the family¹¹. Assisting one family member does not always mean we are assisting and reaching the whole family. We need to expand the care so that we can reach up where the disease can trigger changes ¹².

METHODOLOGY

Qualitative study, developed at the pediatric unit of a public hospital in the city of João Pessoa-PB. The study subjects were seven family members of children with chronic diseases who were hospitalized in the period from February to March 2012. The inclusion criteria for these individuals were: being accompanying the child in the hospital during the data collection period and not having communication problems. The choice was random among the family members who were accompanying the children in the hospital.

It is a research related to the family, whose focus of interest was the individual as part of a family subgroup where both individuals and the relations established among them are studied, with the family as context¹³. In this study, we considered the individual responses of a family member ¹⁴, and the analysis unit was the responsible for child care in hospital.

Data were collected through semi-structured interview, using as guiding questions: Tell me about the way people have welcomed you here at the hospital; How has your relationship been with the people attending the hospitalized child accompanied by you? A pilot test was performed before the beginning of data collection. Interviews were recorded in MP3 format and transcribed in full.

The closure of the collection followed the criteria of sufficiency, that is, when the empirical material allows drawing a comprehensive picture of the study object¹⁵. Data analysis followed the principles of thematic analysis¹⁶. In this process, the following empirical category emerged: Difficulties in the realization of user embracement. The research project was approved by the Research Ethics Committee of the hospital under study with a favorable opinion (Protocol 083/11). Participants signed an Informed Consent Form. To preserve the anonymity of the subjects, the reports were identified by the initial letter I and in parentheses, followed by the ordinal numeral referred to the order of conducting interviews. Thus, the relatives interviewed were coded from I1 to I7. Research subjects were six mothers and a grandmother, aged between 20 and 56 years old, three married and four single. Three had incomplete elementary school education, two had complete elementary school, one had incomplete high school and one is illiterate. Children accompanied by study subjects had the following diagnoses: herpetic dermatitis, leukemia, nephrotic syndrome, cystic fibrosis, chronic neuropathy and thrombocytopenic purpura.

RESULTS AND DISCUSSION

The relationship between family members and professionals during children's hospitalization becomes fragile when it becomes marked by conflicts between those involved, which hinder the realization of the user embracement, harming health care and coping with the disease by families. Some conflicts are marked by lack of information and effective communication, difficulty in understanding the uniqueness of each other, as well as the historically constructed perception that the existence of a qualified service in the hospital is impossible.

If there are some [members of the nursing staff] who are aggressive in there [private hospitals], you can imagine in here [public hospital], where we are not paying? [...] There was only one [member of the nursing team] I had trouble, that I saw she was rude. [...] She said: Mom, you cannot stay with her [child] on the outside, because she is with very low immunity. But I did not know. I thought she [child] could go out to the hall, she and I wearing masks. (I1)

Everyone treat us well, despite being a hospital. ( I 2)

I arrived down there, in the front desk, and they said they there was no pediatrics here in this hospital. That's when I insisted much, and they sent us up here [to the hospitalization]. ( I 3)

It is not it wonderful, because it is a hospital, you know?! ( I 5)

I got along with some [people of the health team] and with others I did not, and so we had some arguments. There were days when we had some fights, I would argue with nurses, with doctors, because the truth has to be told. After a while, our relationship got better. They improved their attitude in relation to me, I improved mine in relation to them. [...] The cleaning girls who work here, we had a misunderstanding once, but then we got along. (I6)

They need to improve a little bit in everything. I mean, the doctors are okay. [...] But regarding the girls who serve us [member of the nursing team], some of them are wonderful, good. But there are others who are not. [...] Sometimes, they say some things that hurt us. (I7)

The perspective of the caregiver, the conflicts in the relationship between family member and professional of the hospital are caused sometimes by receiving insufficient information, lack of dialogue, lack of sensitivity of professionals for the experienced time and by the establishment of difficult interpersonal interactions.

Conflicts between staff and caregivers may interfere with formation of bond, impairing the quality of care provided. Study asserts that there is need for more commitment of health professionals in dealing with the human being and performing the health care in a comprehensive manner. Lack of user embracement in the hospital environment hinders the relationship between work and family, leaving these users even more vulnerable to the implications triggered by hospitalization¹⁷.

A good hospital management promotes better humanized care environment. This involves their teams of workers and users, providing that all provide care and be cared of, causing that the user embracement is established and conflicts are minimized¹⁸.

A warm and resolute attention provides quality care, favoring the formation of bond between the binomial child/family and professionals¹⁹. For families to feel truly accepted and conflicts are reduced, professionals must be sensitive to the reality of these caregivers, understanding their care demands and enabling the consolidation of the user embracement ¹⁷.

Coping with chronic condition becomes even more difficult for the family with the absence of the user embracement during the child's hospitalization. The fragile relationship between professionals and family, marked by conflicts that happen especially due to the lack of understanding of the demands presented and due to lack of sensitivity at the time of care delivery, directly interferes in child care. We see the need for better preparation and organization of the environment and the professionals responsible for health care, promoting the realization of user embracement in the hospital, which would minimize these conflicts and facilitate care for the children and their family members.

What I think it can be improved? They [member of the nursing team] should seek to serve us better. If they have trouble at home, they should leave them there and come here intending to work, to care for children. They should do their work, without comments, it would be better. [...] Especially when we see that our child needs care, we will not respond badly, because we really need them. [...] At first, they all kept talking about her thinness - "Mother, that girl does not eat at home, does she?" [comment made by professionals]. She eats well, but due to her illness, she does not gain weight [...] Constraints still happen, some staff when hitting the vein, speaks: "But she does not have it. She [child] has a very thin little arm". I don't like this. [...] They should also try to know the problems that we go through at home, the situation in which we live, before judging (I4).

Study shows that deficiency in the relationship between professionals and family cause psychological distress and interferes with the production of care. Conflicts generated by this shortage, the judgments and misinterpretations by both professionals and the family, lead these companions to feel helpless, neglected and victims of some prejudice within the hospital. This context triggers, in the family, feelings of distress, aggressiveness and dissatisfaction with the service and professionals⁴.

The relationship between families and health professionals should not be based on the feeling of shame and judgment, but in the provision of quality care and emotional support, so that the family can overcome the obstacles of child's hospitalization.

Nursing has constituted a source of dissatisfaction among relatives, lacking sensitivity in understanding the unique needs of the families in each care opportunity. The child's chronic disease triggers fear of the unknown and insecurity in the ways of conducting family's life because there is not always preparation to deal with the unexpected. The hospital environment in general is perceived as harsh⁷, and the overcoming of this institutional culture is fundamental. It is essential to lean toward the families to host them throughout the hospitalization process, listening to their demands, supporting them in their choices and assisting them in finding ways that strengthen in the daily confrontation of the child's health problem.

The disease process makes the family and the child submissive to the health system. In most of the cases, this process is marked by a labor organization based on technical knowledge²⁰. Families feel subordinate to the rules of services and of health professionals due to their need to care for the sick child. This further weakens the hospitalization process, hindering the establishment of ties, the listening, the dialogue and the establishment of the user embracement.

The health team seems to still hold the view that the hospital and its services are organized to provide care only of sick bodies, not people. Thus, it is clear that professionals need to change their ethical and technical posture in order to produce an aesthetic care that meets the other in their singularity, radically expanding the biological limits currently practiced toward comprehensiveness.

Families are subject to relations of power-knowledge present in health services for fear of facing losses in the care given to sick children, since they have a chronic disease and will be constantly depending on hospital care.

Study points out that those who deal with the human being should always refer to the humanization, consolidating a relationship permeated by dialogue and respect. When the family does not feel cared for, hosted and supported, they manifest reactions that hinder the interpersonal relationships and the formation of bonds.

The actions of knowledge/power demonstrated by the health team are seen as social practices within the hospital environment, are historically constituted attitudes and cause the family to be submissive to professionals and to the service, accepting decisions and feeling helpless in the face of situations.

It was only her [nurse] who talked with me, [...] she talked really irritated. [...] I get angry, I feel like going out there and talking a lot of things. But I keep thinking, no, my God, I need them. (I1)

She [member of the nursing staff] and the doctor came together, rubbing in that my daughter had a chronic disease and that I could not treat anyone badly in the hospital, because I would always need to come back. [...] I would always in need of them. I did not like, at that time I had no support [...]. (I4)

The relationship of knowledge/power in the reports shows the gap between family and professionals, making the hospitalization process even more hostile. Families need support and need to understand that they have the right to meet the health needs of their members. The guarantee of this right cannot reduce them to mere spectators of the therapeutic process, much less submit them to behave passively before professionals and/or institutions. The directionality of care should be based on the establishment of a friendly and respectful relationship between the subjects involved in the care of hospitalized children, for everyone to be mutually strengthened.

Child hospitalization in face of chronic diseases causes families to rely on professionals who care for the child, and thus to put in the health service and professionals their confidence and hope, acting often in a subordinated way, without a listening space to promote dialogue, but feeling obliged to abide by the institutional determinations.

The form of work organization in the hospital environment is a strategy that can both minimize suffering resulting from hospitalization and intensify it depending on the focus of the proposed assistance. The family, who is the primary caregiver of the child with chronic disease, faces difficulties in everyday life, from the care provided in their home to the care provided in the hospital environment²¹. A service that does not promote user embracement can bring suffering to the child and to the family and greater difficulties in facing this process. In addition to the right to health, the family has the duty to know the services and to participate effectively in the planning and evaluation of the health actions adopted, ensuring that assistance. Thus, it can be said that there is a dialogical relationship between rights and duties, these being inseparable and necessary phenomena in health care²².

The ambience, the organization of work, the way assistance is provided and the affection provided to the customer are essential to humanization, which favors the perception of user embracement in hospitals. Thus, it is observed the importance of professionals to reflect on how and to whom the care is produced in order to minimize conflicts often observed¹⁹.

Providing care, in this perspective, requires mobilization of all involved for a shared building of new modes of action, practices and ways of looking that promote the relations of affection and trust.

The user embracement is a complex action, representing a challenge to be faced by professionals in pediatric care. It is needed to (re)signify the health work process, seeking the construction of a new look to family care within hospitals.

CONCLUSION

The chronic condition in childhood requires from the family the need to deal with responsibilities related to care and with frequent hospitalizations resulting from the disease, which generates insecurity in the face of these experiences. Embracing the family in the hospital environment is critical, as the exchange of knowledge and experiences strengthens them and directs them on child care in daily life, both during their hospital stay and in the home environment.

There are numerous difficulties in the realization of the user embracement in the hospital: the fragile relationship between health professionals and family, marked by conflicts often caused by lack of information regarding the hospital routine and care directed at children; the absence of dialogue and sensitivity for a qualified hearing, demonstrated by some members of the health team; the presence of difficult interpersonal interactions that enhance and trigger the emergence of new conflicts; and the relationship of knowledge/power that often imposes the submission of families to the rules and routines of the health service and to the dictates of health professionals.

This study brings to debate important meanings that can contribute to the reflection on the user embracement in hospital pediatric units. Understanding the importance of embracement allows the awareness of professionals about their role in dealing with problems of child hospitalization.

As the study limitation we highlight the difficulty in entering the meanings of the family members' reports, due to their fear to talk about the service that met them, for there was the misunderstanding that could they be harmed in the care provided. In addition, this research was conducted in only one scenario, which prevents the generalization of findings.

It is recommended to carry out further studies on the user embracement, trying to understand the perception of health professionals in order to improve the humanized care to children with chronic disease and to their families in the hospital setting.

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