RESEARCH ARTICLES
Family-centered care: nursing application in the context of the hospitalized child
Sandra Teixeira de Araújo PachecoI; Benedita Maria Rêgo Deusdará RodriguesII; Mirian Carla Rosse DionísioIII; Antônia da Conceição Cylindro MachadoIV; Katia Aparecida Andrade CoutinhoV; Ana Paula Rocha GomesVI
IPhD in Nursing from Anna Nery Nursing School at Universidade Federal do Rio de Janeiro/Federal University of Rio de Janeiro. Adjunct Professor at the Department of Mother-Child Nursing. Faculty member of the Nursing School for Undergraduate and Graduate Programs of the Universidade do Estado do Rio de Janeiro/University of the Rio de Janeiro State. Member of the Research Team: Caring for People’s Health. E-mail:stapacheco@yahoo.com.br
IIPhD in Nursing. B.Sc. in Philosophy. Full Professor at the Department of Mother-Child Nursing. Faculty member of the Nursing School for Undergraduate and Graduate Programs of the Universidade do Estado do Rio de Janeiro/State University of Rio de Janeiro. Member of the Research Team: Caring for People’s Health. E-mail: benedeusdara@gmail.com
IIIHolds a Specialist’s Degree in Neonatal Nursing and Stomatherapy. M.Sc. candidate on the Graduate Program of the Nursing School of the Universidade do Estado do Rio de Janeiro/ State University of Rio de Janeiro. Nurse at the Pedriatics and Neonatal Division of Gafreé e Guinle University Hospital. Professor at Bezerra de Araújo College. Member of the Research Team: Caring for People’s Health.E-mail: mirianrosse@yahoo.com.br
IVM.Sc. in Nursing from the Universidade Federal do Estado do Rio de Janeiro/Federal University of the Rio de Janeiro State. Professor for the Undergraduate Course in Nursing of the Universidade do Grande Rio/ Grande Rio University. Works as a nurse at the Training and Evaluation Service at the Pedro Ernesto University Hospital. E-mail: haccmachado@oi.com.br
VHolds a Specialist’s Degree in Neonatal Nursing and Stomatherapy. M.Sc. candidate on the Graduate Program of the Nursing School of the Universidade do Estado do Rio de Janeiro/ State University of Rio de Janeiro. Works as a nurse at the Pedro Ernesto University Hospital and at the Jesus Municipal Hospital. Professor at Bezerra de Araújo College. Member of the Research Team: Caring for People’s Health. E-mail: katiacouttinho@yahoo.com.br
VIM.Sc. candidate on the Graduate Program of the Nursing School of the Universidade do Estado do Rio de Janeiro/ State University of Rio de Janeiro. Member of the Research Team Member of the Research Team: Caring for People’s Health. E-mail:anaprggu@yahoo.com.br
ABSTRACT
Integrative review of research published in journals indexed on BDENF, Lilacs, and CAPES portal databases from 1990 to 2012. It aims at reviewing the literature on the acknowledgement by nursing of the relevance of family-centered care (CCF), in the context of the hospitalized child. Based on the selection criteria, we identified 21 articles on the subject. Three categories were outstanding upon text analysis: Perceptions of CCF by nursing: Experience in the context of hospitalized children; CCF Deployment model; and CCF deployment strategies. Conclusions show that CCF qualifies the care of hospitalized children and its deployment requires instrumentalization and awareness of professionals since their formation years.
Keywords: Nursing care; family; hospitalized child; pediatrics nursing.
INTRODUCTION
The expression ‘family-centered care’ (CCF) dates back from the mid 60’s. It was used to define the quality of hospital care giving from patients’ and patients’ families’ perspectives. It also aimed at discussing patients’ self-reliance in view of their health needs. Originally, the expression used was ‘patient-centered medicine’, which evolved to ‘patient-centered care’, and in 1990, the term ‘family’ was incorporated to the expression to better describe the approach sought for healthcare. Since then, the expression ‘patient and family-centered care’ came to life as a synonym for ‘family-centered care1.
The CCF turns out to be an approach which acknowledges the relevance of the family as the target client for the care. It ensures participation from all members in planning actions and unveils a new face to care giving in which it is up to the family to define its own problems.
The family is regarded as a central agent in caring for family members. Social isolation stands out as a risk factor, especially when it comes to dependent individuals, namely children, as well as those affected by chronic diseases.
Acknowledging the decisive role of the family to patient’s health, CCF regards it as a partner in the improvement of practices and care system of family members. Additionally, the family must also be regarded by nursing professionals as object of care, and, therefore, as an object of work, since care is nursing work proper.
Currently, it is the family members themselves who define the family, and family actions are not restricted to the biological body. Emotional, social, and developmental support is regarded as components of health care. Thus, the family can be identified either as the nuclear family, integrated by parents and children, or as extended, including people other than those strictly related by blood.
In the Brazilian context, research with families in the nursing area has contributed significantly to the increasing understanding of how they experience disease. Results raise important reflections on possible interventional focus as well as on strategies to help overcome critical situations triggered by disease.
In this sense, scholars identify relevant principles in the accomplishment of family care, namely, the acknowledgement of the continuous status of the family in one’s life, in view of the changeable nature of the health system; the acknowledgement of family’s beliefs, knowledge, and personal mechanisms which enable the family to act with different methods to cope with health problems.
They also highlight the need for facilitating communication, by providing the family with information; for stimulating interfamily support, by valuing family participation in care; for acknowledging family right in decision-making, by welcoming family interference in health processes; and finally, for breaking free from the understanding of a pathology and health professional-centered assistance.
Therefore, CCF-generated benefits to both family and health professionals are countless and irrefutable. As a result, the understanding of family interaction, as well as the identification of effective ways to assist the family, appears as emerging interests in nursing research. Professionals become sensitive and receptive to the family as the care unit, and take part in the application of concepts from a family-centered approach.
With the approval and deployment of the ECA – Estatuto da Criança e do Adolescente (Child and Youth Statute) in the 90’s, those clients have acquired the legal right to be accompanied by parent/guardian upon hospitalization. Such accomplishment is regarded as a milestone in child health care.
A few aspects of the approach to CCF are listed in the Charter for Child and Youth in Hospital – Resolution 41/95 of the National Council for the Rights of Child and Youth (CONANDA), among which, the right of parents and guardians to take active part in the diagnosis, treatment, and prognosis of child/youth, receiving information on the procedure the child/youth will go through.
That legislation acknowledges family relevance in child care. Hence, to fully assist the individual (ill or healthy), reference to his/her closest context – the family - must be made.
In view of the above, the present study aims at reviewing literature on the acknowledgement of CCF’s relevant role in the context of the hospitalized child.
METHODOLOGY
This integrative review uses six methodological steps proposed by Ganong: to select hypotheses or questions for the review; to set up criteria for selection of sample; to present characteristics of primary research; to analyze data; to interpret results and present review.
The research question to this investigation can be formulated as follows: given the context of the hospitalized child, in what ways does nursing literature acknowledge CCF?
Selected criteria comprised articles by nurses or co-authored by other health professionals on nurse’s acknowledgement of CCF, in the context of the hospitalized child. They were available in full in Brazilian journals from 1990 to 2012, indexed on e-data bases.
Data collection was made by electronic research (Internet) in September, 2012, in the Biblioteca Virtual de Saúde (BVS) [Virtual Health Library] site; on the Nursing Database [Base de Dados de Enfermagem- BDENF]; on the Latin American and Caribbean Literature on Health Sciences [Literatura Latino-americana e do Caribe em Ciências da Saúde (LILACS)]; and at the portal of Theses and Dissertation of CAPES – Coordination for the Improvement of Higher Education Personnel [Portal de Dissertações e Teses da Coordenação de Aperfeiçoamento de Pessoal de Nível Superior –CAPES].
For article cataloguing and further analysis, we have elaborated a data collection tool, contemplating the following items: title, authors, journals (year, volume, number, page number), descriptors used, objectives, methodology, results, and final considerations.
Text analysis was two-folded. The first step included the data found in the cataloguing tool above described, and the second step included the comprehensive reading of the full articles and of their syntheses. The purpose was to identify the contribution each investigation added to our guiding question to ensure reaching the objective set up.
Comprehensive reading of the selected articles allowed for their grouping on the bases of contents similarity. Three analytical categories were created: Perception by nursing of CCF; experience in the context of the hospitalized child; CCF deployment, and Strategies for CCF deployment.
RESULTS AND DISCUSSION
Characteristics of scientific production
One thousand four hundred thirty four (1434) publications were identified, twenty-one (21) of which having met the criteria for inclusion in this research - published from 1996 to 2011, prevailing texts (4) of the past year. Data were organized in two steps, namely, those relative to the quantitative description of the variables characterizing the articles, and those related to the qualitative exploration of their contents. In relation to the quantitative description of the twenty-one (21) publications analyzed, prevailing authors were among nurses.
As for place of publication, leading figures (7) were shown in the state of São Paulo, followed by those in Rio Grande do Sul (4), and in Rio de Janeiro (4). Lowest ranks appeared in the sates of Santa Catarina (2), Pernambuco (2), Paraíba (1), and Piauí (1). Scientific production examined is shown in Figure 1.
The range of studies under investigation allowed for the identification of relevant aspects about CCF, in the perspective of the nursing team, and made it possible to formulate the following analytical categories:
Category 1 – Perceptions of CCF by Nursing: experience in the context of the hospitalized child
Publications under analysis showed that in a large part of the articles, the nursing team acknowledges CCF’s relevance, especially when it comes to the care provided to the child undergoing hospitalization.
Thus, research points to the relevance of the family as an essential element in the promotion of comforting and self-assurance to the hospitalized child. They enhance the team must provide the family with conditions for the strengthening of bonds, offering decision-making conditions.
After the companion has been brought into the child hospitalization circuit, care is no longer exclusively child-centered, with the enhancement of his/her relational and social universe. Child and family are regarded as a single client. In this context, publications acknowledge CCF’s concerns are those related with the attention the nursing professional provides family members with. The family is regarded as a target for caregiving, and not just a participant in the decisions related to the hospitalized child.
Since research underline the concern with extending care to family members, family participation in the care is translated as being present, at the child’s bedside, in the eyes of the team – the family’s very presence as an act of care. In addition, the acknowledgement of the family and of their uniqueness is highly relevant to formulate a care dynamics coherent to each family’s life history. Care must help family overcome shortcomings along the child’s disease, and facilitate family reorganization to pull through those moments.
Moreover, CCF is still regarded as a strategy for humanizing child assistance in the hospitalization process. In that context, to humanize care implies, on the professional’s part, the sympathizing and the enhancement of the human person as a social and historical subject, as well as the development of awareness on the concrete reality the child experiences.
As a counterpart to those findings, one can locate research on parental distance-taking from their hospitalized children. They share the perception hospital care must be provided by health professionals.
Another piece of research has also pointed out that a large number of professionals fail to understand how family participation takes place in child hospitalization, and that ignorance accounts for a conflict-stricken relation. Instead of the expected welcome as a recipient of care, the family becomes the child caregiver during hospitalization, initiating, therefore, a process of reorganization of the nursing practice. Therefore, the family’s introduction into hospital, whose purpose should be to attenuate the child’s suffering in face of hospitalization, has been regarded by the team as that of a care giving agent, close to that in the home-care context.
From this point of view, family has not been regarded as an object and/or co-participant of care, but instead as a care giving agent, although professionals acknowledge nursing actions with families of hospitalized children must go beyond those actions implemented in assistance practice.
By delegating the family responsibilities they deem pertinent, professionals enact the version of the political practice rooted in health institutions; that is, professionals duplicate power relations they are involved in, deciding on their own, what directions to imprint in patient care – childcare, in the case in point. Family is not included in discussion or decision-making on care plan.
Complementing those findings, family’s stay in hospital requires the building up of a support network, which comprises the other families on that scene, as well as the health team. Research underlines the relevance of health team’s participation in the family support network provided by the hospital, which becomes an increasingly healthy environment. A dialogic relation between team and family minimizes childcare-related fears and questions. It ensures family participation in that care as well as team’s enhancement of that action through incentive and praise on successful care trials.
The relevance of a shared child and family-centered therapeutic project is also described by other scholars. They highlight the need for restructuring nursing team’s work process, usually procedure and task-centered, aggravated by lack of human resources, work overload, and client overflow; they also refer the need for multi-natured care technologies, aimed at bond formation and responsibility taking.
Other pieces of research reiterate that understanding, as they bring up the need for reorganizing services, for occupational qualification and for infrastructure, as well as for local and national policies which support necessary changes. Even with the acknowledgement by nursing of CCF’s relevance, this is still a distant reality. Further limitations are also described as hindering CCF’s assistance model deployment, such as inflexible and normative conditions created by services, which restrict parental presence at a few of the child assistance hospital units.
Category 2 – CCF Deployment
In general, the way procedure-centered assistance to the hospitalized child has been delineated shows that the family has played a small role in care giving and that the child-family’s needs have not been identified as unique. That factor mirrors the present status of the nursing team in health units, where CCF is clearly missing.
Scholars acknowledge that more flexible visiting routines and child companion regimes have triggered an informal and non-organized stir among family members regarding their insertion on the hospital circuit, which can be described as one of the first for CCF’s deployment. Along this line, nursing can delegate unsophisticated care and can keep hold of the technical procedures.
Nurse-promoted care is characterized for family engagement in child assistance, for it ensures future care after discharge from hospital. However, CCF’s experience is still not standard, as motivation is an individual practice, relying on background and goals by each and every professional.
Category 3 –CCF deployment strategies
A few of the publications analyzed signal to partner-making between family and nursing team for CCF deployment. To this end, academic background must be concerned with family issues, with a focus on CCF starting on the under-graduate level. It must become an essential part of professional development, and ensure nursing knowledge and skills when getting close to the family. Therefore, it favors acknowledgement and enhancement of care giving to the hospitalized child. This process must contemplate not just technical knowledge, but also knowledge of family demands on thinking and acting in face of a number of situations disease and hospitalization can set into motion.
Thus, research specialists point out that courses in the mother-child area on the undergraduate level should seek integration between teaching, research, and non-degree courses and outreach activities through projects, with the involvement and the participation of the faculty to ensure the deployment of the approach22,24. To complement professional formation issues, assistance topics can be added, which suggest Nursing must reorganize its practice for CCF implantation. Care must be valued in each specific family-oriented negotiation and sharing. A new pediatric nursing work logics can be generated in view of bonds developed between professionals and family, on the basis of integrality and reciprocity in child care.
Reorganization of professional action helps identify family and child needs, according to child age group, considering the effective participation of both parts in the health-disease process. Aiming at subjects’ self-reliance, it is urgent to favor the relationship between professional and the binary coupling child-family, to attenuate crisis and suffering stemming from disease and hospitalization, and to acknowledge hindrances that experience brings about into the family’s daily life.
Research shows that upon child’s hospitalization nurses acknowledge the responsibility of the team in sharing care conception with family to integrate those members in care decisions and actions. Such strategy aims at their integration in that context, promoting their welcome, comforting, and self-reliance, ultimately improving conditions for their participation and provision of emotional support to child.
The discussion evinces the need for understanding the context families participate in, the care they provide, their resources for child care, the social network they can rely upon, in addition to their beliefs and values. Upon that understanding, adequation between nursing care and the binary coupling family-child, assistance to family member in acting as care agent, and the setting up of a more harmonious relation in the pediatric unit can be accomplished.
CONCLUSION
This review has evinced the need for changing paradigms in child care during hospitalization and has enhanced possible changes in care logics through CCF deployment in pediatric units. Gaps appear in nurse’s production on CCF model deployment. Research usually portrays CCF’s relevance and suggests implementation of CCF-oriented strategies. Therefore, findings show debate on that deployment is still incipient. Reflections emerge on the need to produce and share experience along this research line.
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Received: 07.10.2012
Approved: 01.01.2013