Health profile and care demands of children with special health needs

Objective: To identify the profile and clinical care demands of children with special health needs cared for by Primary Health Care teams in a city in the countryside of Ceará. Methods: A cross-sectional study with a quantitative approach, carried out in a Family Health Unit in the city of Tauá, Ceará, from May to December 2023. To identify children with special health needs (CSHCN),


___________________________________________________________________________________________________________________________________________________________ INTRODUCTION
Technological advances in the 1990s changed child care practices, contributing to an increase in the survival rate of children with highly complex diseases and providing growth in the group of children living with chronic conditions.These children have been classified using different terms, such as technologydependent children (TDC), chronically ill children (CIC), children with disabilities and children with special health needs (CSHCN).The term CSHCN is more comprehensive and inclusive. (1,2)SHCN require continuous health care of a complex nature, often with a plurality of diagnoses, dependence on health services and different professional categories. (2)They are classified into five groups, according to their clinical care needs, such as developmental, technological, medication, modified usual and mixed care demands. (3)n the first group, there are children who require psychomotor and social recovery with support from professionals, such as physiotherapists, occupational therapists and speech therapists.Technological demands include those that use some technology resulting from procedural care, such as tracheostomy, gastrostomy, colostomy and indwelling bladder catheter, including home care. (4,5)he third group includes those who are dependent on medication, that is, who use one or more drugs periodically or continuously at home.Demands of changed habits are any other care that differs from the care offered to a healthy child, including the performance of common tasks, such as hygiene, feeding, changing clothes, mobility and special care, such as using diapers for children over 3 years of age, use of devices to aid mobility, such as wheelchairs, orthoses and prosthetics. (4)ixed care demands include those that present demands from more than one group, with the need to diversify consultations with pediatrician, neuropediatrician, physiotherapist, speech therapist, among others, with follow-up by a multidisciplinary rehabilitation team. (6)This continuous care at home is one of the greatest challenges for caregivers.In view of this, the need for family members/caregivers to be trained to provide this care is highlighted.3)(4) Faced with these care needs, Primary Health Care (PHC) is characterized by a set of actions with the objective of developing comprehensive care that impacts people's autonomy and their health situation, and must be operationalized in defined territories, considering the specific characteristics of their population, through the exercise of care and management practices, in the form of teamwork. (7,8)It is the English | Rev. enferm.UFPI.2024;13:e5509| DOI: 10.26694/reufpi.v13i1.5509gateway to health services, playing a role in coordinating care so that interaction occurs between all elements of the Health Care Network (RAS), (7) since children with chronic conditions need to be assisted in all levels of health care. (9,10)t is essential that care for CSHCN begins in PHC, allowing for better therapeutic results, reducing hospital admissions and the demand for emergency services, through coordinated and resolute care.In view of this, there is a need to identify CSHCN and their health demands, as this will allow for a better assessment of the assistance provided to these children and reorientation of actions, contributing to creating comprehensive, universal and equitable policies that provide necessary social support for family members, enabling the improvement of care provided and resolution. (11)Care for CSHCN is complex and, therefore, involves different professional categories, such as nursing.
Therefore, assistance provided to CSHCN requires knowledge and skills on the part of health professionals so that children receive appropriate treatment and care. (12)In the municipality of Tauá, Ceará, data on CSHCN relate only to children with disabilities, with 149 children aged 0 to 12 years old according to the city's Health Department. (13)According to estimates, 150 to 304 would be CSHCN, considering the prevalence of CSHCN in Brazil. (14)lthough there are several studies on CSHCN in different care contexts, there is still a significant gap in knowledge about the specific profile and these demands.Much of the research focuses on general aspects or specific groups of diseases, neglecting the scope and complexity of conditions that require specialized care. (1,2,3,5,6)Therefore, it is imperative to carry out studies on the profile of CSHCN and their care demands, promoting more effective, inclusive and equitable support for these children and their families, as well as the formulation of public policies and support programs that truly meet the diverse needs of these children, constraining the development of effective intervention strategies.
Therefore, the following research question was chosen: what is the profile and clinical care demands of CSHCN living in the city of Tauá, Ceará?The study aimed to identify the profile and clinical care demands of CSHCN treated by PHC teams in a city in the countryside of Ceará.

METHODS
The present study is characterized as a cross-sectional study with a quantitative approach, prepared based on STRengthening the Reporting of OBservational studies in Epidemiology (STROBE). (15)tudy design was chosen due to the need to recognize CSHCN in the municipality of Tauá, Ceará, which currently does not have data on this estimate, thus applying a screening instrument to survey this quantity.
The locus of the study was the assigned area of a Family Health Unit (FHU), which has two Family Health Strategies (FHS) and a multidisciplinary team, composed of a psychologist, nutritionist, physiotherapist and social worker.According to the city's Health Department (13) , the two areas have 7,046 registered people, 2,294 families and around 1,207 children, with data extracted from the Electronic Citizen Record (PEC).
To identify the number of children aged 0 to 12 years and screen CSHCN, 13 community health workers (CHW) working in the FHU territory were contacted, who had undergone prior training carried out by the researcher, lasting an average of one hour, to explain the research objectives and what CSHCN are and their demands.
To compose the sample of this study with family members, family members/caregivers over 18 years of age from CSHCN aged 0 to 12 years and who accompany CSHCN who have had at least two consultations in health care services prior to the day of data collection in the last six months. (16)Child and Adolescent Statute (ECA) criteria were adopted, ensured by Law 8,069/90, which classifies a person aged up to 12 years of age as a child and a person in the age group from 12 to 18 as an adolescent. (17)amily members/caregivers who do not know children's clinical conditions to respond to the data collection instruments, who do not have the ability to understand, express and understand the documents presented and are unaware of or do not accompany CSHCN in the services/points of care in which they are inserted were excluded from the sample.When consenting to participate in the research, family members/caregivers of CSHCN signed the Informed Consent Form (ICF).
The instrument for identifying CSHCN was the Triagem de Crianças com Necessidades Especiais de Saúde (CRIANES), translated and culturally validated for Brazil in 2012, from its original version created in the United States, the Children with Special Health Care Needs Screener (NS-CSHCN).It has five items with "yes" or "no" answers, making it possible to identify children who already have chronic, physical, developmental, behavioral or emotional conditions and who need health services, in addition to those English | Rev. enferm.UFPI.2024;13:e5509| DOI: 10.26694/reufpi.v13i1.5509required by children in general.Additional information was collected on identification, sociodemographic data (sex, age, family income and years of study) and clinical conditions of CSHCN through electronic/printed medical records and/or exams/reports held by family members. (18)he CSHCN Screener ® allows to define the prevalence and profile of CSHCN and identify the health needs domains, making it possible to assess the conditions of access to the service network, expand coverage and resolve the demands presented by this population group so that policies and programs can be appropriately adapted to guarantee access to the necessary health services and care. (19)It is noteworthy that this instrument was used in other English-speaking countries to determine the prevalence of CSHCN, such as Australia and the United Kingdom, translated and culturally adapted in other countries such as Switzerland, Brazil and Egypt. (20)he research was carried out from May to December 2023, comprising the phase of data collection, organization, analysis and discussion for subsequent consolidation and presentation of results.Variables were analyzed descriptively, in which absolute numbers and percentages were calculated to express the importance of each variable in relation to the whole.The research was approved by Opinion 6,039,743 of the Public Health School of Ceará Research Ethics Committee (ESP/REC).

RESULTS
Subsequently, data relating to the identification of the 28 CSHCN aged 0 to 11 will be presented.To represent the compilation of data resulting from the research, tables were created on the sociodemographic and clinical profile in association with special health needs demands, including diagnoses, medications, health and education services used.From the 28 CSHCN identified, it was observed that 22 had multiple health demands; 71.4% are male; 85.8% are preschoolers and schoolchildren aged 4 to 11; 82.1% study in regular public or private schools; 60.7% have a monthly family income equal to or greater than the minimum wage, and, in 12 families, it was certainly influenced by the Continuous Payment Benefit (BPC); 92.9% families lived in the urban perimeter; in 82.1% of families, the mother was the main family member/responsible for the care provided to CSHCN; other family members such as grandmother and sister (10.7%) were also reported during the research.4 deals with the number of CSHCN monitored by each professional category and the number of professionals who provide assistance to these children.It was observed that, of the 28 CSHCN, 82.1% are followed up by doctors and 46.4% are followed up by up to four professionals.

DISCUSSION
Sociodemographic characterization showed a predominance of male CSHCN, in line with international studies. (21,22)2) In relation to age, the majority of preschoolers and schoolchildren were identified.Comparing this data to the most identified health conditions, in this case, ASD and ADHD, it is observed that there is a direct relationship between the two, as neurodevelopmental disorders have been presented as an important public health issue in recent years and triggered discussions and changes within the scope of health systems in different countries.In the case of ASD, it is recommended that the diagnosis be made early -preferably from the first year of life -, whereas, in ADHD, the diagnosis is recommended between the ages of 5 and 7.This process can be initiated in PHC when identifying children with developmental delays in childcare consultations, for instance. (23,24)he predominance of the maternal figure was identified as the main informant and companion of CSHCN in their needs.Families, especially mothers, who are most often considered the primary caregiver, assume an enormous responsibility in carrying out technical care and control symptoms of children's condition outside the health institution, potentially losing days of work or having to give up their job, suffering financial difficulties and being overwhelmed both emotionally and physically while dealing with the care of that child, often resulting in needs greater social support supports. (25)he importance of including education services in the research is highlighted, as, like the home, which is the natural space for children, school must also be included as an essential element of their overall physical, mental and social development. (25)conomic classification indicated a predominance of families that lived on at least one minimum wage, often coming from BPC.In comparison to a study carried out in Alexandria, Egypt, the challenges experienced by families went beyond children's clinical aspects and were related to social vulnerabilities, such as low income and low level of education of caregivers, where of the 405 families interviewed (60.1%) indicated that their income is insufficient to meet the needs. (21)egarding the area of residence, this study showed a huge difference between those who lived in urban and rural areas, which implies a considerable portion of CSHCN living in urban areas, which can provide these families with timely access to specialized services that are mostly concentrated in the urban area of the municipality.English | Rev. enferm.UFPI.2024;13:e5509| DOI: 10.26694/reufpi.v13i1.5509 In relation to the demands presented by CSHCN, there was a predominance of children between 4 and 11 years old with multiple demands, with developmental and medication demands being more frequent, indicating that they are definitive CSHCN, i.e., those who have continuous needs for care.26) In relation to the professional category that provides care for CSHCN, there was more emphasis on the medical category, followed by occupational therapy and, finally, psychology.It can be deduced that doctors follow up children from the period when the disorder is suspected until the diagnosis is made and medication is prescribed.26) There is an appreciation for the role of pediatricians and the understanding that access to services occurs only through medical consultations, indicating a biological conception by family caregivers.In order to overcome this current scenario of children's health, especially CSHCN, the importance of the nurse's role in the process of development and implementation of PHC attributes in its entirety is evident. (27)t is important that nurses, especially those working in PHC, develop actions that can be carried out through health education groups with families who have CSHCN and carry out home visits to promote effective access to PHC and, consequently, strengthen the role of the nursing care team that overcomes the disease-centered model. (23,27) study carried out in Chile with caregivers and nurses of CSHCN identified that there are different barriers and problems for implementing care for these children, such as inequality in public care policies, invisibility of CSHCN in the PHC context and lack of psychosocial and economic support for families. (28)t is important to highlight the importance of PHC attributes being discussed in the training of future professionals as well as during continuing education to promote access to and follow-up of CSHCN.In PHC, priority must be given to health promotion and disease prevention, especially in children who already have special health demands.Within the scope of care, it is believed that the breadth and feasibility of access and follow-up in PHC can reduce morbidity and mortality and improve the quality of life of these children and their families. (27)arrying out collection only in one FHU can be pointed out as a possible limitation of this study, raising the need to cover all FHUs for a more reliable profile of CSHCN in the municipality and which can also be carried out in other health services in different regions of the country.However, the present study contributes to advancing knowledge about the number of CSHCN in a territory without any previous study carried out to date about the profile of care demands and health and education services and professionals usually required by children and their families.

CONCLUSION
The majority of children are male and live in the urban area of the municipality, living on a family income greater than or equal to the minimum wage to maintain the family's general needs, and are students, often accompanied by their mother.Medication and developmental demands were the most significant, being perceived by family members/guardians or professionals aged 1 to 3 years, which reinforces the importance of a multidisciplinary team in monitoring these children.
The most prevalent diagnoses were ASD and ADHD, which reaffirms the need to reorient actions in health and education services based on more resolute and specific public policies that meet the demands of children and families.
The results of this study may contribute to the analysis of assistance provided to CSHCN in relation to the role of health professionals in supporting CSHCN and their families, expanding the perspective of professionals and managers towards the organization of the service network at their levels of care, contributing to more equitable and resolute care through access to PHC.

Table 1 .
Relationship of the socioeconomic characterization of children with special health needs aged 0 to 11 years with special health needs demands.Tauá, Ceará, Brazil, 2024

Table 2 .
Clinical characterization of children with special health needs according to special health needs demands.

Table 2
deals with the clinical profile of CSHCN, using the screening instrument.Development, technological, medication, modified usual care and mixed care demands were considered, and the age at which special health needs were perceived by family members/guardians or professionals, with the majority being in the age group of 1 to 3 years (39.3%), with a prevalence of developmental and medication demands at 85.7% of CSHCN identified.

Table 3 .
Clinical characterization of children with special health needs.Tauá, Ceará, Brazil, 2024 Centro de Atenção Psicossocial), polyclinic, Basic Health Unit, hospitals; and 20 attend regular education, where two CSHCN also have links with the Association of Exceptional Parents and Friends (APAE -Associação de Pais e Amigos Excepcionais).Health profile and care demands of children with special...

Table 4 .
Number of children with special health needs followed up by professional category and professionals providing assistance.Tauá, Ceará, Brazil, 2024