Modelo de atención y clasificación de «Niños y adolescentes con necesidades especiales de atención en salud-NANEAS»: recomendaciones del Comité NANEAS de la Sociedad Chilena de Pediatría

Abstract

"Children with special health care needs" (CSHCN) is an emerging and heterogeneous group of paediatric patients, with a wide variety of medical conditions and with different uses of health care services. There is consensus on how to classify and assess these patients according to their needs, but not for their specific diagnosis. Needs are classified into 6 areas: a) specialised medical care; b) use or need of prescription medication; c) special nutrition; d) dependence on technology; e) rehabilitation therapy for functional limitation; and f) special education services. From the evaluation of each area, a classification for CSHCN is proposed according to low, medium, or high complexity health needs, to guide and distribute their care at an appropriate level of the health care system. Low complexity CSHCN should be incorporated into Primary Care services, to improve benefits for patients and families at this level. It is critical to train health care professionals in taking care of CSHCN, promoting a coordinated, dynamic and communicated work between different levels of the health care system. Compliance with these guidelines will achieve a high quality and integrated care for this vulnerable group of children.

Accessibility of children with special health needs to the health care network

“…However, similar results have also been found in other studies, emphasizing that emergency services and tertiary services are preferred at the expense of primary level services, even to address the demands of PHC (8,12,28) . According to a Chilean study, when the attention to the health of CSHCN is focused on secondary and tertiary care services financial costs increase, the continuity of care is impaired and the accessibility to the benefits available in primary health care is restricted (30) .…”

(In)visibility of children with special health needs and their families in primary care

“…Also, the information they send to the family is not always compatible with their needs or degree of understanding, making them anxious, confused and with the feeling of being disrespected, which contributes to not being able to take actions or make decisions in the face of demands child care (8) . As of 2008, the Chilean Society of Pediatrics began to use the terms Niños y adolescentes com necessidades especiales de atención em salud (NANEAS) instead of the term chronic illness (16) . In this sense, authors believe that special attention from the public health system is necessary, developing health care at the primary, secondary and tertiary levels, respectively, seeking to ensure comprehensive health care for this group and magnify the use of the features available in the health network (16) .…”

“…As of 2008, the Chilean Society of Pediatrics began to use the terms Niños y adolescentes com necessidades especiales de atención em salud (NANEAS) instead of the term chronic illness (16) . In this sense, authors believe that special attention from the public health system is necessary, developing health care at the primary, secondary and tertiary levels, respectively, seeking to ensure comprehensive health care for this group and magnify the use of the features available in the health network (16) .…”

Autoeficacia de cuidadores familiares de niños/as con trastornos del espectro autista: revisión integrativa

“…En la actualidad, el modelo de atención, del cual está impregnada la totalidad de la guía clínica disponible en Chile, se centra en el manejo del niño/a con TEA, restando importancia al valor agregado que supone el cuidador sobre ellos, aun con falencias en la entrega de directrices especificas respecto al manejo y las acciones que deben tomar los cuidadores en las distintas etapas que deben vivir junto a sus hijos, con el fin de facilitar su afrontamiento y adaptación a esta nueva vida, a cargo de un niño con esta condición, a no ser que categoricen por alguna condición crónica concomitante o un una condición severa dentro de los TEA que los permita integrar parte del programa NANEAS (3)(4)(5)(6) .…”

“…En caso de que las comorbilidades asociadas al TEA supongan la necesidad de atención con al menos 4 especialista por más de 12 meses, en conjunto a la necesidad de alimentación especial, asistencia tecnológica, rehabilitación y/o educación especial, sin ser estas necesariamente consecuencias del trastorno, es posible ingresarlos dentro del modelo de atención y clasificación de niños y adolescentes con necesidades especiales de atención en salud (NANEAS), que supone un seguimiento mayor en cuanto al tipo y periodicidad de la atención con los distintos profesionales que participan en el programa, tales como médicos especialistas, enfermeras, kinesiólogos, nutricionista, entre otros, en el nivel secundario y terciario de salud (4)(5)(6) .…”