Education of Children with Special Health Care Needs in Brazil

Education of Children with Special Health Care Needs in Brazil
Eneida Simões da Fonseca
Associated Professor Faculty of Education
Rio de Janeiro State University (UERJ)
e-mail: [email protected].
Ivone Evangelista Cabral
Associated Professor Anna Nery Nursing School
Rio de Janeiro Federal University (UFRJ)
Supervisor of the post-doctorate probation of the first author
ABSTRACT
Children with special health care needs are the ones that have great risk
to develop a chronic condition, a serious physical, developmental, behavioral or
emotional limitation, and that will need special health care and other types of
services in a frequency higher than the one required by children in general.
According to the Brazilian legislation, this population group has the right to
receive a proper education. This exploratory study has as its aims to describe
and to analyze the Brazilian experiences of attention to the demands of
development and learning of children with special health care needs. The
content analysis carried out on the data collected during visits done on four
institutions in the State of Rio de Janeiro (Brazil) that attend children with health
limitations showed that, despite legal support, the attention to the demands of
development and learning of children with special health care needs is not a
reality. The children with more complex health problems, in particular those with
neurological and motor impairments, are not considered eligible to education. In
order to attend their educational demands, it is important to change the way the
professionals look at them, moving away from considering their limitations as
incapacity. The children with special health needs have potential that need to be
addressed in a way that they can explore, with the best possible quality of life,
their possibilities also on the school environment.
KEY WORDS
Hospitalized Child; Education; Special Health Needs;

This paper is an extract of a post-doctoral report made by the first author under the supervision of the second one
at the Research Group on Children Health from the Anna Nery Nursing School, Rio de Janeiro Federal University
(CRIANES/EEAN/UFRJ), Brazil. This post-doctoral study was supported by the qualification program (PROCAD) of
the Rio de Janeiro State University (UERJ).
1
INTRODUCTION
According to the Brazilian Constitutional Law, everybody has the right to
education.1 The educational provision for sick children, following what the
Brazilian legislation recommends2;3 is named as hospital school when the child
is hospitalized and home education when the sick child, because of a health
condition, is not allowed to leave home to attend the ordinary school.
The Brazilian policy for the provision of special education on the basic
education2 supports the enrolment of a child with special needs on the ordinary
school. In addition, the child who is sick or has a deficiency is considered as a
child with special needs and has the right to educational provision since the
early childhood stage. 4
On today’s health attention, the children who present more complex
illnesses, mainly the ones with neurological and motor impairments, are part of
the group with the right to receive educational provision. The technology
advancements have contributed a lot for the improvement of medicine. This
way, children that, in the past could probably die, are being able to keep a quite
good quality of life despite the complexity of their health problems. A lot of
illnesses and serious health limitations that, in the past did not allowed a sick
child to survive are no longer being considered as mortal but have being passed
to the condition of chronic sickness.5
The children with special heath care needs are the ones that have great
risk to develop a chronic condition; a serious physical, developmental,
behavioral or emotional limitation, and that will need special health care and
other types of services in a frequency higher than the one required by children
in general.6 The peculiar behavior of these children may not be perceived as
having meaning by the ones that still guide their care practice by the biomedical
model. By keeping these children not visible and, as such, alienated, their
cognitive, motor and social development stagnate. As a consequence, gains
strength the idea that these children have no perception, interest or will. But, if
we propose to ourselves a reflection, we can consider that everything that we
see when in contact with these children is only one way to look7 and to interpret
their real possibilities and potentialities.
There are studies showing that an effective follow up of the development
and learning processes of a child with special health care needs requires an
efficient articulation between the teacher and the professionals from other fields
of knowledge, and between all of them and the familiar or the person
responsible for such child.8;9 An intervention started as earlier as possible, will
provide this child with a better improvement of her/his general condition, and not
just on the clinical aspect but also on the emotional and social interactions.10
The result of an adequate intervention is the possibility of inclusion of this child,
since very young, in all life situations in order to lead her/him to have the best
possible living existence.11
This way the limitations imposed by a deficiency or a special health
condition are not obstacles to this child’s daily life. The various and extended
relations of the child with persons and things in her/his surroundings, offer the

The expression ‘children with special health care needs’ (CSHCN) presented by McPherson et al., (1998),
has not being used by the Brazilian education area that prefers ‘children with special needs’ or ’child with
deficiency’ (Brasil, 2001). However, as will be seen throughout this text, the meaning of the Brazilian expression
does not exclude the meaning of McPherson et al. (1998) and, in a way, can be considered as being equivalent.
2
precise dimension of which environments (home, school, community, etc.) 12 will
be necessary to intervene to assure to this child the right to participate on
society. It ratifies that a deficiency or a special health need do not disqualify the
individual of its citizen condition.13
Thinking about these issues was that this study was designed. The
premise of investigation considered was that the health condition and the
physical appearance of a child with special health care needs contribute for
her/his restrictive participation on what surrounds her/him. It happens because
the attention on the child limitations (what the child lacks) inhibiting to invest on
her/his potentialities. The object of this study was to delimitate the development
and learning demands of children with special health care needs on the context
of hospital schools on the State of Rio de Janeiro. The research question was
‘how are attended by the hospital schools the developmental and learning
demands of children with special health care needs? Based on that, the aim of
this piece of research was to describe and to analyze the State of Rio de
Janeiro hospital schools provision as related to the attention to the
developmental and learning demands of children with special health care
needs.
METHODOLOGY
This is an exploratory study. The notes taken during the visits to
institutions that attend children with special health needs on the State of Rio de
Janeiro were organized and submitted to the content analysis 14 in accordance
with the aim of this study.
The visits made to the institutions were not random. The initial idea was to
visit hospital schools on the city of Rio de Janeiro. However, because of
governmental changes in this municipality on that same occasion, the visits did
not take place. But the opportunity of contact with health professionals that work
in the referred institutions, made possible the visits. The reasons for the visits
and the aims of the research were explained to the professionals and they
agreed to give the needed information.
Four institutions were visited. They were identified as A: a school on a
pediatric ward of a State University Hospital; B: a school on a pediatric Federal
University Hospital; C: a school on a pediatric State Hospital; and D: a
pedagogical stimulation service of a non profitable Rehabilitation Institution. The
institutions identified as A, B and D were located in the city of Rio de Janeiro.
The institution named as C was in the city of Niterói. Both municipalities were
part of the State of Rio de Janeiro.
RESULTS
Four thematic units emerged from the content analysis (Bardin, 2009)
applied to the notes taken during the visits. They were:
- educational and professional background, contact between the teacher
and the other professionals (professional role);
- age and diagnoses of the clientele (students);
- school administrative structure and physical and material resources; and,
- aims, activities routine and contact with the sick child’s original school
(school routine).
3
The analysis of the information from each thematic unity made it possible
to get a synthesis for each of them, as follow:
- The role of the teacher on the hospital school
The teacher has the sense of responsibility as related to the educational
demands of children with special health care needs. The contact between the
teacher and the other professionals that attend these children is not systematic.
It happens depending on the need and the proximity of the teacher with these
other professionals. The teacher knows about the legislation related to teaching
sick children in hospital (A, B, C, D).
In order to work as a teacher in the hospital environment, it is necessary to
have an University degree in Education or Special Education, to sit and pass an
examination for being a teacher and to apply at the Special Education
representative to get the permission to teach in the hospital. The professional
situation of a teacher working in a hospital does not differ from the other teacher
working in an ordinary school. It is important to say that, in one of the visited
hospital school (A), the teacher was a probationer, from the course of Pedagogy
of a State University and the educational activities offered there were given just
two hours per day and only three days a week.
- The children on the hospital school
Part of the children receiving hospital educational provision in the visited
institutions suffers from lung diseases, cardiac and/or oncology illnesses. The
children with more complex health needs in general do not attend the hospital
school. The teacher follows the medical or health team recommendations as
related to which children may go to school.
The focus of the hospital school is on the students within the school age
group (6-14 years old). The length of hospitalization, as well as the number of
days attending school may vary a lot and is related, among others aspects, to
the child diagnosis and clinical health condition. The re-internments happen
because the same illness returns as the child does not reach the cure to the
illness by using oral medication after discharge and it makes her/him to get
back to the hospital. Other aspect to be considered is that some families may
lack attention or the basic necessary conditions as related to hygiene and
nourishment of the sick child, for example, and that put under risk the full
recovery from the health problem.
- The structure of the hospital school
In relation to the hospital school administrative issues, it is run as a joined
space of an ordinary school near the hospital (A, B, C). The hospital teacher
has its functional life (frequency, license permission, etc.) attached to the
ordinary school.
The hospital schools count with basic material resources (stationery,
didactic) and with personnel sent from the secretary of education or from the
ordinary school. There is no frequency for the materials to be sent to the
hospital school and, sometimes, they are not adequate to the needs or
particularities of the clientele attended at the hospital school (B, C). It may
happen that the Special Education sector send material resources to the
hospital school but also with no systematization or the necessary frequency the
hospital school requires. In order to supply some of its material needs, the
4
hospital school receives donations made by volunteers or health professionals.
The hospital teacher may also campaign inside the hospital in order to get a
specific material, for instance, a game or a particular didactic resource to be
used with the sick students (A, B, C).
As related to the physical arrangements for the hospital school, the
classrooms are poorly adapted, with not enough space for the number of
children to be attended and not adequate for children with physical limitations
(A, B, C). There are no classrooms for all the school groups and some of the
children have classes on their wards (B, C). The furniture is not enough or
adequate to the children’ needs. The rooms or their contents (tables; chairs) are
not of exclusive use by the school.
The resources of technology like DVD, computers and photo machines,
are available on the hospital school (A, B, C, D) but, the maintenance or
repairing of these equipments depend on bureaucratic procedures that take
time. In general, the repairing is not done because there is no money available
for it. The computers are used to help the children to write, to do academic
tasks and to play games. The computers were not connected to internet. As
such, the hospital schools do not count with internet facility and have no direct
contact with the school of origin of the sick child.
The daily number of students attending the hospital school varies. Even
though, the number of teachers is not enough to cover all the demands of the
groups of sick children to be attended (A, B, C, D). One particular aspect that
increases the problem of not enough number of teachers at the hospital school
is that the teacher has an extra task. Inside the hospital school, the teacher may
also have to administrate this environment (students frequency, contact with the
head of the hospital, attend meetings, etc.).
- The routine of the hospital school
The teaching activities were present (A, B, C) on the visited institutions. It
was perceived by observing the wall murals of these hospital schools exposing
the work done by the children (basic school contents printed on loose sheets).
There was also a therapeutic play approach with recreational, artistic and free
play activities with the aim to help the children to show their emotions and
feelings (A, B, C, D). These activities are offered to the children when they are
not doing a school work as a strategy to keep them busy and, when it is a
familiar activity, to make them feel well (A, B, C).
The teachers follow the official academic school curriculum and make the
necessary adaptation to adjust the school activities to the needs and medical
condition of the sick child. The adaptation is also used to help the child to
integrate with the others students at the hospital school classroom. Sometimes,
the school activities done at hospital are not related to the ones from the
ordinary school of the child because the exchange between both educational
environments is not easy to be established.
The hospital school is open during the week days, in general, after lunch
time because the mornings at the hospital can be very much busy with medical
procedures and rounds of health professionals (A, B, C). The children that
attend the school are grouped as illiterate and literate. There are also multilevel
classrooms. If the hospital school counts with an extra teacher or if it is with a
small number of school age children, it is open the possibility to have an earlier
childhood group (B). There are not enough classrooms for all the school groups.
5
As mentioned before, some of the teachers have to work inside the ward or
divide the time of the school day among different school groups.
The plan for the school activities is made weekly and, everyday the
teacher takes notes about the frequency and the performance of the children as
related to the activities proposed to them (A, B, C). These notes help to build up
the achievement report of each child after being discharged. A copy of this
document may be sent to the child’s ordinary school if it is asked. This
document can also be recovered by the hospital school if the child gets back to
the hospital.
Just in one of the hospital schools (A) the children were observed doing
activities. This situation was a limitation to this study that wanted to describe
and to identify the demands of children with special health care needs. Such
details were obtained by talking and by asking questions to the teachers (B, C).
The children names as well as the number of their beds and infirmary are
registered by the teachers that also group them according to their age and
educational level. After that, they go to the school environment. The teachers
are always paying attention to the children. At the time for an afternoon lunch
break (served by the hospital nutrition department), the teacher helps the
kitchen professional to deliver the food correctly to each child because there are
children with food restriction. At the end of the school day, the teacher follows
the children back to their wards. The teachers must be careful because there
are children with the same name and a lot of them do not use an identification
bracelet neither are able to remember their bed or ward number.
Not all the children go to the hospital school at the same time. Not all
children stay at the classes the whole period that the school day lasts. On these
moments the teacher counts with the children’s family members or other
professional at the hospital school to help the child to get in and out of the
school environment. When the child arrives at the school after the class has
started, the teacher uses strategies to introduce the child to the group and to
the work being done. If the child has to leave the school before the class is
over, the teacher proposes an ending task to the child. With a lot of diversity,
the hospital school works with group and individual tasks and activities, surveys,
the help of the familiar that is accompanying the sick child on the school, an
older child as helper of the younger ones, etc. As said before, games and
artistic activities are proposed as pastime (A, B, C, D).
The teachers said to have difficult to give the adequate attention to a child
with a more complex illness (A, B, C), mainly with the one with motor limitations
(because the school has no adequate physical space neither the necessary
adaptations) or communication problems (to express desires, needs, interests,
feelings, etc.). Initiatives related to alternative/assistive communication are in
use (D) to help the child with special health care needs to interact and to
participate both in the place where she/he receives treatment and in her/his
daily life.
DISCUSSION
It is not possible to generalize the results obtained by this exploratory
study. Just four institutions were visited and just in the State of Rio de Janeiro in
a universe of 128 hospital schools allover Brazil. 15 Even though, some aspects
may be considered as contributing for that a child with a complex illness or with
6
very special health care needs do not receive attention from the teacher as
related to her/his developmental and learning demands.
One of these aspects is that the majority of children with a complex illness
are not on ordinary hospital wards. They are in semi or intensive units not only
because of their medical condition but, in general, because the specific
equipments they need are just available in those places. As the hospital schools
do not have enough number of teachers, these children stay without
educational attention or do not are considered eligible to attend school. There
are studies showing that, if these children count with an adequate structure and
the necessary support, they may leave the hospital, return home and attend
classes on an ordinary school.16; 17
The terminology child with a special health care needs6 that has being
used to define this specific population is broad enough for that all health
problems could be contemplate by the health and education public policies. But
the broad understanding of it makes that some health conditions are not
considered as part of this specific group and not eligible to receive support and
services. This way, it is not possible to say that a child with a very special,
complex or rare health condition will have her/his needs for medical and
educational support covered as, in general, happen for children with more
common illnesses.
The Brazilian document that established the strategies and guidelines for
having a hospital school,3 considers that it will be administratively autonomous.
But, in general, the official agreement between the education and health areas,
does not consider this issue. As such, the hospital school has difficulties to
apply for it to receive teachers or the necessary equipments and materials to
attend the demands of the sick pupils. The fact that there is no regularity for
delivering the needed resources for the hospitalized children is, according to the
Brazilian legislation, a violation of their right to be educated. It reduces the
chances these children may have to attend school. In fact, the educational
authorities could not to leave to send to the hospital school the necessary
resources neither to avoid to negotiate with the hospital a more adequate
physical space for the school to develop in an adequate way its activities.
Another perceived problem is that the hospital school does not offer early
childhood attendance (for children below 5 years old) as it is recommended by
the Brazilian legislation, in particular for young children with special needs.
Another important issue is that once the hospital teacher has also to answer for
the coordination and the administration of this school (B, C) it goes against the
recommendations3 related to the functional attributions established at the
Brazilian document about this issue for the professional working in this
educational modality. To observe and follow these legal documents properly
could give to the sick child a better chance to participate on the educational
environment and to benefit from this experience, in particular for the ones with
very special health care needs.
The hospital teacher exchanging information with other hospital
professionals is important in order to guarantee a more adequate attention to
the needs of a child with a complex illness. The cooperation between
professionals from different areas may help do not forget and better understand
the real needs of a child with special heath needs. If this child does not receive
the necessary support, it will not be possible to help her/him to develop and to
learn because she/he is in a disadvantage even in relation to social
7
interaction18. There are studies showing that the integration of different areas of
the knowledge are useful in order to find alternatives and to develop resources
to better assist the specific needs of a child with a complex illness in order to
establish an adequate channel of communication with such child to explore
her/his true needs and interests.19;20
It is very important to stress that the way the teacher and the health
professional look at the child with a complex illness ought to not concentrate on
what is missing in the child. A child with special health care needs requires to
be seen more attentively and with no prejudices or judgments. This child needs
someone able to mediate the happenings of the world with her/him. To give
voice and to listen to this child21 are the essential attitudes for that this child may
become herself/himself the protagonist of her/his own life.
An example of such attitude was observed on the activities developed at
the institution D. The use of alternative/assistive communication (home made
board cards with pictures and/or with key expressions) to establish an effective
communication with a child with a severe neurological disability helps to define
what are the needs for that the child could have an adequate accessibility and
to use her/his possibilities in a most functional manner.
Most of the children assisted by D, even the ones on the school age group,
were not attending school. The institution D has a lot of difficulties to contact the
schools where the children have a formal enrolment or are attending on a
regular basis. The occupational therapists of D said that the families say that
the greater the demands of the child as related to health services make it
difficult to pay attention on the learning process. The families considered
important to their children the services offered by D, mainly because the
resources of adaptations provided help the child integration and more clear
communication with family and friends as well as reduce the daily stress that
problems of understanding may cause.
The institution D pointed the difficult to be in contact with other necessary
services demanded by the child with special health care needs and that are
available outside the institution,22 as is the case of the ordinary school. On D
context, it seemed adequate to provide the children with pedagogical support
related to health education and, not specifically, related to school learning. On
the Brazilian scenario, a research23 demonstrated a ‘loose mesh social
network’24 in the relation between the child and the school. Being the school the
most important social environment for the child, even though for the child with
serious illnesses, this relation could not be so loose.
The educational demands of a child with a complex illness have not
systematic attention in Brazil. This child is part of an invisible population for the
health area, for the education and, even though for the society25. However, in
countries like Canada, Finland and England such proposal has been developed
with the aim of guarantee the right to education to this specific group.26
CONCLUSIONS
This brief exploratory study ratifies that the right to education for the child
with a complex illness or special heath care needs has legal support. It also
puts in evidence the invisibility of this population group even inside the
hospitals, the need to assist the communication demands of this child and the
fragile hospital school service provided.
8
The families of these children do whatever they can to, at least, to maintain
the health treatment for them. The contact of the health service with the social
and educational demands of this child is made in a punctual manner and, many
times, depending exclusively on the determination of the family to ‘run behind’
and to claim for the child’s rights.
To consider the possibility of a wholesome future for a child with special
health care needs is metaphoric. The limitations of a healthful childhood for
such child are not on her/his many and complexes limitations but because it is
lacking to her/him the essential experiences that children with no limitations
normally have.
To assure to a child with special health care needs the right to education
requires to see and to treat her/him as a citizen. This means that all the ones
who deal with this child or are in touch with her/him must be able to disclose
limitations, restrictions and/or deficiencies from incapacities. It is needed to look
at the possibilities and potentialities that the child with special health care needs
has. Changing the way one looks and sees this child will positively reflect also
on the social relation of this child with the family and the community. Without
this change, there is no way to observe in a daily basis the Brazilian public
policies and legislations related to this population group happening.
REFERENCES
1
BRASIL. Constituição da República Federativa do Brasil. Brasília: Imprensa
Oficial. 1988
2
BRASIL. Diretrizes Nacionais para a Educação Especial na Educação Básica.
Resolução CNE/CBE no. 2. de 11/09/01. Diário Oficial da União no. 177,
seção 1E de 14/09/01. p.39-40. Brasília-DF: Imprensa Oficial. 2001
3
MEC. Classe hospitalar e atendimento pedagógico domiciliar: estratégias e
orientações. Brasília: MEC/SEESP. 35p. 2002.
4
BRASIL. Lei de Diretrizes e Bases da Educação Nacional. Lei no. 9394 de 20
de dezembro de 1996. Brasília: Imprensa Oficial. 1996
5
EISER, C. Chronic childhood disease: an introduction to psychological theory
and research. New York: Cambridge University Press. 1990
6
McPHERSON, M.; ARANGO, P.; FOX, H.; LAUVER, C.; McMANUS, M.;
NEWACHECK, P.; PERRIN, J.; SHONKOFF, J.; STRICKLAND, B. A New
Definition of Children With Special Health Care Needs. Pediatrics. 102: 137140.1998.
7
BIANCHETTI, L. Um olhar sobre a diferença: as múltiplas maneiras de olhar e
ser olhado e suas decorrências. Revista Brasileira de Educação Especial.
8(1): 1-8. 2002
8
CLEARY, J. Caring for children in hospital: parents and nurses in partnership.
London: Scutari Press. 1992
9
9
McFADYEN, A. Special care babies and their developing relationships.
London: Routledge. 1994
10
GOLDSCHMIED, E.; JACKSON, S. Educação de 0 a 3 anos: o atendimento
em creche. Porto Alegre: Artmed. 2006
11
WERNECK, C. Sociedade Inclusiva: quem cabe no seu todos? Rio de
Janeiro: WVA. 2000
12
BRONFENBRENNER, U. The ecology of human development. Cambridge,
Massachussetts: Harvard University Press. 1979
13
BRASIL. Conselho Nacional dos Direitos da Criança e do Adolescente.
Direitos da criança e do adolescente hospitalizados. Resolução n. 41, de
13/10/1995. Brasília-DF: Imprensa Oficial. 1995
14
BARDIN, L. Análise de conteúdo. Portugal: Edições 70 LDA. 2009
15
FONSECA, E.S. Mapeamento brasileiro das escolas hospitalares e
domiciliares. Disponível em <www.escolahospitalar.uerj.br> Acesso em 5 de
fevereiro de 2011
16
REHM, R.S. Creating a context of safety and achievement at school for
children who are medically fragile/technology dependent. Advances in Nursing
Science. 24(3): 71-84. 2002
17
REHM, R.S.; ROHR, J.A. Parents’, nurses’, and educators’ perceptions of
risks and benefits of school attendance by children who are medically
fragile/technology-dependent. Journal of Pediatric Nursing. 17(5): 345-353.
2002
18
ANDERSON, L.S. Mothers of children with special health care needs:
documenting the experience of their children’s care in the school setting. The
Journal of School Nursing. 25(5): 342-351. 2009
19
GARCIA, S. H. As tecnologias de informação e comunicação e o atendimento
escolar no ambiente hospitalar: o estudo de uma aluna hospitalizada.
Dissertação (Mestrado) Faculdade de Educação, Universidade Federal de
Santa Maria, Rio Grande do Sul. 103p. 2008
20
BORTOLOZZI, J.M. Contribuições para a concepção de um ambiente virtual
de aprendizagem para escolares hospitalizados. Dissertação (Mestrado)
Faculdade de Educação, Pontifícia Universidade Católica do Paraná, Curitiba.
237p. 2007
21
CARNEVALE, F. A. Listening authentically to youthful voices: a conception of
the moral agency of children. In STORCH, J.L.; RODNEY, P.; STARZOMSKI,
R. (eds.), Toward a moral horizon: nursing ethics for leadership and practice.
chapter 19, p. 396-413. Canada: Pearson Education. 2004
10
22
CABRAL, I.E. Políticas públicas e programa de saúde direcionados à infância
e adolescência. Sistema de Educação continuada à distancia (SESCAD) do
Programa de Atualização em Enfermagem. Porto Alegre: Artmed/
Panamericana Editora. 2007
23
MORAES, J.R.M.M. A (des)articulação da rede social de crianças com
necessidades especiais de saúde na dialética da invisibilidade do cuidar em
enfermagem. Tese (Doutorado) Escola de Enfermagem Anna Nery,
Universidade Federal do Rio de Janeiro. 199p. 2009
24
BOTH, E. Família e Rede Social. Rio de Janeiro: Livraria Francisco Alves
Editora S.A. 1976
25
RAY, L.D. Parenting and childhood chronicity: Making visible the invisible
work. Journal of Pediatric Nursing. 17(6): 424-438. 2002
26
LIGHTFOOT, J.; MUKHERJEE, S.; SLOPER, P. Supporting pupils with
special health needs in mainstreaming schools: policy and practice. Children
& Society. 15(2): 57-69. 2001
11
Education of Children with
Special Health Care Needs
in Brazil
Eneida Simões da Fonseca
Associated Professor Faculty of Education
Rio de Janeiro State University (UERJ)
e-mail: [email protected].
Ivone Evangelista Cabral
Associated Professor Anna Nery Nursing School
Rio de Janeiro Federal University (UFRJ)
Supervisor of the post-doctorate probation of the first author
Children with special health care needs
(CSHCN)
- great risk to develop
a chronic condition
a serious physical, developmental, behavioral or
emotional limitation
need special health care and other types of services
(McPherson et al.,1998)
- frequency of health attention higher than
the one required by children in general
Brazilian legislation
children with special
health care needs
have the right to
receive a proper
education
Brazilian Special Education on the
Basic School Guidelines (2001)
Hospital and Home Schooling:
strategies and guidelines (2002)
Methodology
- exploratory study
- to describe and to analyze the Brazilian
experiences of attention to the demands of
development and learning of children with
special health care needs
- content analysis (Bardin, 2009)
North=10
1
North East= 25
5
1
5
3
3
1
2
14
1
5
12
Center West= 24
10
6
25
6
South= 19
9
4
1
17
South East= 53
Results
- Systematic literature review
definition/therminology
illnesses and health problems
- visits done on four Brazilian institutions
(RJ) that attend children with health
limitations
- despite legal support, the attention to the
demands of development and learning of
children with special health care needs is
not a reality
- children with more complex health
problems (neurological and motor
impairments), are not considered eligible
to education
- lack of teachers and of adequate physical
space and material resources for these
schools
Hospital Infantil João Paulo II (MG)
Considerations
- to attend CSHCN educational demands, it
is important to:
change the way the professionals look
at them, moving away from considering
their limitations as incapacity (Pereira, 2009).
- children with special health needs have
potential that need to be addressed
though technology of assistive
communication in a way that can explore,
with the best possible quality of life, their
possibilities also on the school
environment.
Referências
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
ANDERSON, L.S. Mothers of children with special health care needs: documenting the experience of their children’s care in the school setting. The Journal of School
Nursing. 25(5): 342-351. 2009
BARDIN, L. Análise de conteúdo. Lisboa/Portugal: Edições 70 (revista e atualizada). 2009
BENDERSKY, M.; LEWIS, M. Environmental risk, biological risk, and developmental outcome. Developmental Psychology. 30: 484–494. 1994
BENDOR, S. Anxiety and isolation in siblings of pediatric cancer patients: the need for prevention. Social Work in Health Care. 14(3): 17-35. 1990
BORTOLOZZI, J.M. Contribuições para a concepção de um ambiente virtual de aprendizagem para escolares hospitalizados. Dissertação (Mestrado) Faculdade de
Educação, Pontifícia Universidade Católica do Paraná, Curitiba. 1-237. 2007
BOTH, E. Família e Rede Social. Rio de Janeiro: Livraria Francisco Alves Editora S.A. (2a. edição). 1976
BOWLBY, J. Separation of mother and child (a letter). Lancet. (1): 480. 1958.
BOWLBY, J.; ROBERTSON, J.; ROSENBLUTH, D. A two-year-old goes to hospital. Pycho-anal. Study Child. 7: 82-94. 1952.
BRASIL. Política Nacional de Educação Especial na Perspectiva da Educação Inclusiva. Brasília-DF: Imprensa Oficial. 2008
______. Diretrizes Nacionais para a Educação Especial na Educação Básica. Resolução CNE/CBE no. 2. de 11/09/01. Diário Oficial da União no. 177, seção 1E de
14/09/01. p.39-40. Brasília-DF: Imprensa Oficial. 2001
______. Lei de Diretrizes e Bases da Educação Nacional. Lei no. 9394 de 20 de dezembro de 1996. Brasília: Imprensa Oficial. 1996
COOPERS, S.; BLITZ, J. A therapeutic play group for hospitalized children with cancer. Journal of Psychosocial Oncology. 3(2): 23-37. 1985
ELIAS, E.R. Children with multiple disabilities and special health care needs. In. CAREY, W.B. et al (ed.). Developmental-behavioral pediatrics. ch.74, p. 737-745. New
York: Elsevier: Health Science Division. 2009
FELS, D. I.; WILLIAMS, L. A.; SMITH, G.; TREVINARUS, J.; EAGLESON, R. Developing a video-mediated communication system for hospitalized children. Telemedicine
Journal. 5(2):193-208. 1999
GARCIA, S. H. As tecnologias de informação e comunicação e o atendimento escolar no ambiente hospitalar: o estudo de uma aluna hospitalizada. Dissertação
(Mestrado) Faculdade de Educação, Universidade Federal de Santa Maria, Rio Grande do Sul. 1-103. 2008
GASPARY, A. C. A. Apropriação de ferramentas computacionais em ambientes digitais virtuais, por crianças com câncer hospitalizadas. Dissertação (Mestrado)
Faculdade de Educação, Universidade Federal do Rio Grande do Sul, Porto Alegre. 1-115. 2005
GORDON, J.; COLBY, H.; BARTELT, T.; JABLONSKY, D.; KRAUTHOEFER, M.; HAVENS, P. A tertiary care-primary care partnership model for medically complex and fragile
children and youth with special health care needs. Archives of Pediatrics and Adolescent Medicine. 161(10): 937-944. 2007
HEJ. Children going into hospital: their preparation and their needs. Health Education Journal. 16(3): 151-167. 1958
HENNING, J.; FRITZ, G.K. School re-entry in childhood cancer. Psychosomatics. 24(23): 261-269. 1983
HEWITT-TAYLOR, J. Children with complex and continuing health needs: the experience of children, families and care staff. London: Jessica Kingsley Publishers. 2008
______. Children with complex, continuing health needs and access to facilities. Nursing Standards. 23(31): 35-41. 2009
HOLANDA, E.R. Doença crônica na infância e o desafio do processo de escolarização: percepção da família. Dissertação (Mestrado) Faculdade de Enfermagem,
Universidade Federal da Paraíba, João Pessoa. 1-116. 2008
INVERNIZZI, L.; VAZ, A. F. Educação Física nos primeiros anos do ensino fundamental: uma pesquisa sobre sua organização pedagógica em classe hospitalar.
Movimento, Porto Alegre. 14(2): 115-132. 2008
KHAN, N.A.; BATTLE, C.V.; Chronic Illness: implications for development and education. Topics in Early Childhood Special Education. 6(4): 25-32. 1987
KINDARE, L. Preventive group intervention with siblings of oncology patients. Children Health Care. 14(2): 110-113. 1985
KRUGER, B.J.; RADJENOVIC, D.; TOKER, K.H.; COMEAUX, J.M. School Nurses who only care for children with special needs: working with a teacher’s world. The Journal
of School Nursing. 25(6):436-444. 2009a
KRUGER, B.J.; TOKER, K.H.; RADJENOVIC, D.; COMEAUX, J.M.; MACHA, K. School nursing for children with special needs: does number of schools make a difference?
Jounal of School Health. 79(8):337-346. 2009b
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
KOVACS, M.J. Morte e desenvolvimento humano. São Paulo: Casa do Psicólogo. 1992.
LIGHTFOOT, J.; MUKHERJEE, S.; SLOPER, P. Supporting pupils with special health needs in mainstreaming schools: policy and practice. Children & Society. 15(2): 5769. 2001
LIMA, R.A.G. O processo de trabalho da enfermagem na assistência a criança com câncer: análise das transformações em um hospital-escola. Dissertação (Mestrado)
Escola de Enfermagem de Ribeirão Preto, Universidade de são Paulo, São Paulo. 1-123. 1990
LINDSAY, M.M. Problems in the education of the physically handicapped child. The Journal of the Royal Society for the Promotion of Health. January, vol. 69, p. 350357. 1949
MENDES, K.S.; SILVEIRA, R.C.C.P.; GALVÃO, C.M. Revisão integrativa: método de pesquisa para a incorporação de evidencias na saúde e na enfermagem. Texto
Contexto Enfermagem. 17(4): 758-764. 2008
MCPHERSON, M.; ARANGO, P.; FoOX H.; LAUVER, C.; MCMANUS, M.; NEWACHECK, P.; PERRIN, J.; SHONKOFF, J.; STRICKLAND, B. A New Definition of Children With
Special Health Care Needs. Pediatrics. 102: 137-140. 1998
MEC. Classe hospitalar e atendimento pedagógico domiciliar: estratégias e orientações. Brasília: MEC/SEESP. 2002
Migone, M., McNicholas, F. e Lennon, R. Are we following the European Chart? Children, parents and staff perceptions. Child: care, health and development. 34(4):
409–417. 2008
MORAES, J.R.M.M. A (des)articulação da rede social de crianças com necessidades especiais de saúde na dialética da invisibilidade do cuidar em enfermagem.
Tese (Doutorado) Escola de Enfermagem Anna Nery, Universidade Federal do Rio de Janeiro. 1-199. 2009
MUNHÓZ, M.A.; ORTIZ, L.C.M. Um estudo da aprendizagem e desenvolvimento de crianças em situação de internação hospitalar. Educação PUC-RS Porto Alegre - RS,
ano XXIX. 1(58): 65-83. 2006
NEVES, E.T.; CABRAL, I.E. A fragilidade clínica e a vulnerabilidade social das crianças com necessidades especiais de saúde. Revista Gaúcha de Enfermagem. 29(2):
182-90. 2008
NICHOLAS, D.B.; DARCH, J.; MCNEILL, T.; BRISTER, L.; O'LEARY, K.; BERLIN, D.; KOLLER, D.F. Perceptions of online support for hospitalized children and adolescents.
Social Work Health Care. 44(3): 205-223. 2007
PALÁCIOS, A.; ROMAÑACH, J. El modelo de la diversidad: la bioética y los derechos humanos como herramientas para alcanzar la plena dignidad en la diversidad
funcional. Espanha: Ediciones Diversitas. 2006
PAULA, E.M. O Ensino Fundamental na escola do hospital: espaço da diversidade e cidadania. Educação Unisinos. 11(3): 156-164. 2007
POURSANIDOU, K.; GARNER, P.; WATSON, A. Hospital-school liaison: perspectives of health and education professionals supporting children with renal transplants.
Journal of Child Health Care. 12(4) 253-267. 2008
RAY, L.D. Parenting and childhood chronicity: Making visible the invisible work. Journal of Pediatric Nursing. 17(6): 424-438. 2002
REHM, R.S. Creating a context of safety and achievement at school for children who are medically fragile/technology dependent. Advances in Nursing Science. 24(3):
71-84. 2002
REHM, R.S.; ROHR, J.A. Parents’, nurses’, and educators’ perceptions of risks and benefits of school attendance by children who are medically fragile/technologydependent. Journal of Pediatric Nursing. 17(5): 345-353. 2002
ROBERTSON, J. Young children in hospital. London: Tavistock Publications Limited. 1958
SAMEROFF, A. Environmental context of child development. Journal of Pediatrics. 109: 192-200. 1986
SANTOS, D.; MOHR, A. O ensino de ciências na classe hospitalar: identificação da literatura e análise da temática presente nos artigos. Atas do V Encontro Nacional de
Pesquisa em Educação em Ciências (ENPEC). Bauru/SP. 12p. 2005
STEIN, R.E.; JESSOP, D.J. What diagnosis does not tell: the case for a noncategorical approach to chronic illness in childhood. Social Science Medicine. 29(6): 769-778.
1989
STERN, S.B. Educational Program for pediatric patients at the Geisinger Medical Center. US Department of Health, Education and Welfare: National Institute of
Education. 43p. 1975
STILLION, J.M.; PAPADATOU, D. Suffer the Children: An Examination of Psychosocial Issues in Children and Adolescents with Terminal Illness. American Behavioral
Scientist. 46(2): 299-315. 2002
THE NATIONAL CENTER ON FINANCING FOR CSHCN. Focus on Child Health Policy. Issue 1. Institute for Child Health Policy. University of Florida. Disponível em
<mchb.hrsa.gov/mchirc/chusa_04/_pdf/04.pdf>. Acesso em 02 junho 2009. 2004
VAZ, A. F.; VIEIRA, C.L.N.; GONÇALVES, M.C. Educação do corpo e seus limites: possibilidades para a Educação Física na classe hospitalar. Movimento, Porto Alegre.
11(1): 71-87. 2005
YANTZI, N.M.; ROSENBERG, M.W.; MCKEEVER, P. Getting out of the house: the challenges mothers face when their children have long-term care needs. Health and
Social Care in the Community. 15 (1): 45–55. 2006
YATES, P.; STETZ, M.K.; Families’ awareness of and response to dying. Oncological Nursing Forum. 26(1): 113-120. 1999
ZARDO, S.P. O desenvolvimento organizacional das classes hospitalares do RS: uma análise das dimensões econômica, pedagógica, política e cultural. Dissertação
(Mestrado) Faculdade de Educação, Universidade Federal de Santa Maria, Rio Grande do Sul. 1-214. 2007
Contact
[email protected]
[email protected]
Thanks!
Welcome to Brazil for
the Football World Cup in 2014
the Olympics and Paralympics Games in 2016