Theoretical care model for children with congenital Zika virus syndrome in the family context*

Objective: to develop a theoretical model about the care of children with Congenital Zika Virus Syndrome in the family context. Method: the Straussian Grounded Theory and the theoretical/philosophical framework of Callista Roy and Leonardo Boff were used. It was carried out in northeastern Brazil, with 19 participants, in four sample groups. The data were collected and analyzed simultaneously, using the constant comparison method. Results: the theoretical model comprising the mother’s care for the child with Congenital Zika Virus Syndrome in the family context is formed by five categories: revealing family care, centered on the mother, to the child with the syndrome; identifying the maternal bond that determines the care for children with the syndrome in the family context; identifying the factors that hinder the mother’s care for the child with the syndrome; recognizing the evolution of the child with the syndrome in the face of early stimulation care; and recognizing harms due to the absence of early stimulus to children with the syndrome. Conclusion: the phenomenon runs through the care of the child with Congenital Zika Virus Syndrome, in the family context and centered on the mother, and is faced with the need for shared responsibility among the family members.


Introduction
In 2015, an abnormal increase in children with microcephaly associated with the Zika virus recently arrived in Brazil began in the country (1)(2)(3) . Microcephaly is a congenital anomaly in which the Cephalic Perimeter (CP) of the child born at term is equal to or less than 32 cm (4) .
With the advancement of cases in 2016 and of research studies on the phenomenon among newborns, it was observed that in vertical transmission of the virus there were also other malformations in addition to microcephaly, known as Congenital Zika Virus Syndrome (CZVS) (5) .
CZVS is a congenital anomaly associated with Zika virus infection, characterized by intracranial calcifications; decreased brain volume; severe brain abnormalities; ocular and auditory anomalies; delay in cognitive, motor and speech development; cerebral palsy; epilepsy; dysphagia; irritability, that is, the syndrome can manifest itself through a wide range of abnormalities, in addition to the reduced head circumference (6)(7)(8) .
It is a complex anomaly with a marked impact on the child's health and growth and development, family life and health services, due to the complexity of care that the condition demands. In addition, uncertainties about functional limitations, future implications and demands for care to come, still under study (9) .
Due to the great possibility of severe limitations of cognition and motor skills, there is a need for coordinated and family-centered health care (9)(10) . There is evidence that family-centered care for children with special needs has better results (11) .
In this perspective, care for children with CZVS must be multi-professional to support the family in comprehensive care for the child's biological, psychological and social development. In addition to the daily family care to meet their needs related to functional limitations, it includes early stimulation in the family care routine (10,12) . Early stimulation, especially in the first years of life, a period in which brain development occurs more quickly, maximizes the potential for physical growth and neurological, behavioral, cognitive, affective and social maturation (12) . Therefore, there is a need for the Family Health Strategy (FHS) team to offer care that supports the family and provides the child with early stimulation, in their family life, according to the guidance of the specialized team that assists the child. This care developed by the family is essential, as the team of specialized professionals stimulates the child's growth and development, but requires continuity by the family in their daily lives, for the child's good evolution.
However, there is little action by the FHS professionals, including the Nurse, due to the lack of knowledge of the appropriate actions to assist children with CZVS, in the home context, with the involvement of other professionals in this care practice being better known (1,10) .
Although some studies address children with CZVS and its repercussions on family dynamics, they are presented in a descriptive way (1,10,13) . The care of children with CZVS, in the family context, as a process in the context of Nursing in primary health care, has been little studied. This gap can be related to the fact that the first cases of CZVS, worldwide, appeared in Brazil in 2015 (4,7) and, therefore, theoretical models that explain the process and concepts of child care with CZVS in the family context may still be in the process of development.

Method
This is a qualitative approach study, guided by the Straussian Grounded Theory (GT). This GT method provides a systematic means of collecting data to describe, explain and predict the professional practice (14) .
Grounded theory means: "The theory was derived from data, systematically gathered and analyzed through a research process", that is, the researcher starts with an area of study and allows the theory to emerge from the data. Thus, the theory derived from the data tends to offer a better understanding -and provide a guide for action in practice -than the theories derived from the gathering of concepts, through speculation or experience, because the theory derived from the data comes close to the reality experienced by the participants (14) .
The study was carried out in a Child Rehabilitation Center (CRC), located in a capital city in northeastern Brazil. It is an organ belonging to the State Department of Public Health and provides assistance to people with any type of disability, be it physical, mental, sensory and/or multiple, aged 0 to 18 years old. The institution was chosen because it is a reference center in the state capital for assistance to children with CZVS, as a strategy to identify the families of children with this diagnosis and the approach to participate in the study.
The selection of participants followed these inclusion criteria: family members who provided direct care to children with CZVS; aged ≥ 1 year old and with a minimum time of six months living with the child with CZVS. The exclusion criteria were family members whose The study then had the participation of 19 informants who experience the care of children with CZVS. Four sample groups were formed: Group I, the largest, with twelve mothers; Group II was composed of three parents; Group III by two CRC physiotherapists, and Group IV by two FHS nurses. The data collected determined the need to form sample groups in addition to those composed by family members due to the questions raised during the collection (14) . The groups were formed according to the hypotheses about care that were raised during the interviews and needed to be verified.
The determination of the number of informants in each group followed the principle of theoretical saturation; that is, as collection took place, data was analyzed simultaneously, in order to identify the properties (characteristics of a category) and dimensions (similarities and differences), until no new properties and dimensions appeared in the data that characterized saturation.
Data collection took place from April to October 2018, through a recorded interview held in a private location and chosen by the informant. The initial interviews took place predominantly at the CRC and some at the informants' homes. In the interviews with the mothers, a script was used to request sociodemographic information and to discuss the care provided to children with CZVS, through the following guidance: "I would like you to tell me how it has been for you to take care of your child with this problem".  (14) .
In open coding, the concepts were identified, from the data, with their properties and dimensions.
Subsequently, the differences and similarities between the data already coded from previous interviews were And throughout this regrouping process, the stage of INTERACTIONS -Revealing family care, focused on the mother, to the child with CZVS*.
-Demanding intensification of the mother's attention, for the care of the child with CZVS* in the family context; -Caring for the child with CZVS* centered on the mother with the support/help between family members; -Experiencing maternal care in the basic and clinical/specific needs of children with CZVS*; -Stimulating the growth and development of the child with CZVS* in family life; -Stimulating the growth and development of the child with CZVS* through professional support;

CONDITIONS
-Identifying the maternal bond that determines the care of the child with CZVS* in family life; -Identifying the factors that hinder the care of the mother to the child with CZVS*.
-Materializing unconditional involvement (love) between mother and child with CZVS*; -Experiencing the mother's confidence/distrust in leaving the child with CZVS* to the care of family members; -Facing feelings of loneliness, maternal exhaustion and acceptance of the health condition of the child with CZVS*; -Having a fragile support network for maternal care for children with CZVS*; -Reducing the mother's time in stimulating the growth and development of the child with CZVS* due to maternal tiredness and exhaustion; -Experiencing the difficulty of access to assistance that stimulates the growth and development of children with CZVS*.

CONSEQUENCES
-Recognizing the evolution of the child with CZVS* in view of early stimulation care; -Recognizing losses due to the lack of early stimulation to children with CZVS*.  As noted in this previous statement, it is reinforced that the responsibility for the care of children with CZVS lies in the mothers, as the father places himself as the Rev. Latino-Am. Enfermagem 2021;29:e3458.
provider of the home and the mother's helper, not feeling responsible for the care.
Therefore, both as a result of the weakened support network, as well as the child's emotional and physical dependence on the mother, and the non-verbal communication understood almost exclusively by the mother, maternal tiredness and exhaustion consequently occur because, in addition to the usual care to a standard child, these children in study demand intensification of the mother's attention to understand and meet their needs. With these different needs, they demand the presence of the mothers for the care of the child by family members, or the mothers can only trust and feel safe to be absent from the residence, for a moment of need, according to the development of the child that allows for less dependence.
Given these factors that cause the maternal burden of care for the home and the child, there is a reduction in the mother's time for the early stimulation of the growth and development of the child with CZVS, causing a reduction in the quality of life of both.
In this direction, mothers, even with the losses in their self-care, social and work renouncements, and physical and mental fatigue, face this burden of responsibility and care due to the involvement and unconditional love between mother and child with CZVS. This is because there is an integral involvement between the mother-child binomial in which the two come together in full, expanding However, there is a delay in the development of the skills of children with CZVS, as they have difficulties in accessing specialized assistance that promotes a routine of early stimulation of their growth and development to be performed routinely by their family.

Discussion
The families of the participating children with CZVS live in the inland or on the outskirts of the city where the study was conducted and reported difficulty in transport to the child care reference services. This problem reflects the inequalities and difficulties in accessing health services in Brazil by children with disabilities (17) , and the problems faced by family caregivers, due to institutional policies that hinder service coordination and communication (18)  and care fragmentation continue (17) .
Poverty is another factor that affects the accessibility and equality of the services (10,17) . In the study, the family income of the families is nearly 1 minimum wage, from In this sense, the Nursing professional, by sensitizing family members to share care with the mother, making the form of concern and care as shared among family members, allows the mother (caregiver) to reduce her burden and enable maternal self-care, as well as the early