Questions/Answers

In December 2015 the State of Maranhão in Brazil received the first cases of congenital microcephaly due to Zika virus. On January , 2016, the first multi-service clinic was carried out, and an outpatient clinic specializing in congenital microcephaly was started at the State Juvenile Maternal Child Hospital Complex Dr. Juvêncio Matos - the NINAR project.On March, 2016, the child development center was set up to receive these children, including medical care and rehabilitation, as well as maternal and child care. We observed the need to extend not only medical and rehabilitation care but mental and social health care to these families, the need that these families existed not around the disease but mainly that they were allowed to exercise their motherhood gave rise to the Nursing Support House for families of children with neuropsychomotor development disorders, a different support house, where there is not only a place to stay while the child rehabilitates but a space where the child's memory can be counted within each family, there was not only one drinks with Zika Congenita, but exists after passing through the House a baby and his family.The families of the interior are invited to spend a week in the House where they participate in circuits of experiences that include: medical and dental care, multiprofessional stimulation in groups and individual, mental health operative groups, art therapy, musicalization of the family, story telling and theater , cooking classes, scrap workshops with recycled material making toys, musical instruments, furniture, stimulation material. With families you are invited health professionals from your city to come and do a training and bonding by providing in return the creation of small nests of support in your city. Families on the circuitry learn self-sustaining techniques while caring for their children.

We reach the poorest and most vulnerable cities in our State through an inclusive service in society, allowing access to social and cultural experiences that promote the insertion of disabled children into the family and this family in society, being emotionally strengthened and valued as a citizen being able to tell his story and self sustain despite his son's illness.

The project provides support services, guidance and multiprofessional assistance to families of Maranhão children with neuropsychomotor development disorders, valuing the motherhood, building the story of this baby in the family, and allowing the capacity to be productive despite the illness of his son.

Our project promotes: 1. Appreciation of family and child with neuropsychomotor development disorder through mothering. 2. Promotion of the mental health of these families. 3. Ensure access to the public service of quality and humanized so that the experience can be replicated. 4. It contributes to the development of sustainable economic growth through workshops of recycled material, encouraging these families to be socially productive. 5. Ensure a healthy life and well-being not only for children, families and society when returning to their home city, but for professionals and caregivers 6. It allows a permanent education and updating of the professionals of needy cities, stimulating the creation of nests to support families

The project contemplates families of children with neuropsychomotor development disorders - especially zika virus congenital syndrome, and medical and rehabilitation professionals, promoting access to cities lacking in multidisciplinary support the chance to reproduce with their own nests resources to support and support sustainable families.

.With this new way of caring, valuing a family, a memory of the child and a professional that accompanied it, we have already received reports of support nests for family support that work regularly, families who support themselves by making cakes and biscuits or estimation material and recycled furniture , that they learned in the workshops of experiences of the House. We received reports from families who drink died but now has a story to tell that it is not a disease, through the memories they learned to build in the House this baby exists.

. We consider our project innovative because of our way of taking care not only of the disease but of allowing these families to have their baby back, we can not change the physical characteristics or course of the disease, but these families have the right to exercise their productive despite the disease, have a story to tell. Allowing professionals who accompany children in their hometowns, despite the limited resources, to approach and value that family as a social being that must be loved, respected and valued.

In Brazil we are not aware of a project that simultaneously develops medical and social assistance, permanent education and research, as we have achieved the partnership of universities in our state and neighbors that are contributing to a better understanding of the pathologies assisted. We base and adapted ourselves for project building on anthroposophical philosophy and waldorf teaching methods and institutions such as The Bethel Institution Hospital for the mentally ill in Bethel, today the neighborhood of Bielefeld, Germany.

Our state government financed the implementation of the project and its cost of maintenance.

Yes

This model of caring already affects not only children with congenital zyg A virus but also all pathologies that may cause a neuropsychomotor development disorder, including other congenital infections, neonatal anoxia, rare and not so rare syndromes. We believe that this model can be reproduced for any chronic pathology in which not only the disease should be looked at but the patient as a social individual and a family that must be inserted in the society as productive, to allow to exist despite the disease is a right of every citizen.

Considering the social benefit that the project has been promoting by making these families active in society, we believe that international and national bodies have the interest to maintain the project or reproduce it, we know that it exists due to the sensitivity of our current government, however a whole social action is already efficient, actions are being recognized, the promotion of seeing invisible individuals and families has brought together university groups and public agencies, not only medical action but mainly social action is being carried out. To reproduce this way of caring is very easy, to look at the human being besides his illness becomes a reproducible practice in various professional and care levels of attention and care, transforming so that it can exist is our mission.

The professionals who currently work on the project are from the health care network of our state, as well as the professionals invited to participate in other cities, so even with change of government the project will exist, which occurred was an invitation to a new way of take care.

No

The project had an initiative based on the experience of the needs of the families that participate in the rehabilitation center, throughout the development of the project regional and other institutions of higher education, as well as NGOs has contributed to the maintenance of activities and purchases of appliances . With the development of the project and comprehensiveness to families in our state who did not have access to resources for diagnosis, treatment and empowerment of their diseases higher education institutions were interested in contributing to the research and extension of the pathologies involved, thus contributing to the training of the professionals and allowing families access to new diagnostic and treatment resources. In particular, the Federal University of Maranhão today participates voluntarily through its faculty, researches and students, accompanying through qualitative and quantitative research the evolution of the project, mainly in the congenital syndrome of zika virus.

We consider that the main lesson learned is that the individual exists beyond his illness, that this can be seen even in the public service, that time is not measured but lived, we all have the right to a memory and to build it we just need to participate and allow the social being (father, mother, son, professional) to exist despite his illness, when we value that family, mother and child, this being overlaps his illness, becomes real, when I build an eternal memory a history , allowing these families to exercise their motherhood, become productive, make these professionals and become participative and can express their feelings, we build a dignified and humane public service. Through the inclusion of participatory groups, recycling workshops, alternative techniques of art, music, and cooking we collaborate to build an individual, so this family exists.The insertion of this new form of care has contributed to a substantial gain for the State, Family and Individual through a participative practice possible in the public service, adding technical, scientific, social and humanitarian values. The support, guidance and welcome was not only for the patient (the child) but mainly for the family. Our main challenge is to be able to not only lead the way of looking after family and individual beyond illness, but to promote multilevel participation in the community .