Seeking tirelessly for better health and life conditions for the child with myelomeningocele*

Objective: to understand the experience of families in the care of children with myelomeningocele. Method: a qualitative research study, which adopted Symbolic Interactionism and Grounded Theory as its theoretical and methodological framework, and the semi-structured interview as a data collection instrument. Twenty-eight participants from thirteen families living in a municipality in the inland of So Paulo took part in the study. Results: the family tirelessly seeks better health and life conditions for the child with myelomeningocele; aiming at the childs autonomy, it is mobilized to the necessary treatments, to learn the care, to adapt the routine, as well as to supply for all the childs needs so that it reaches potential development, looking for a less dependent future with inclusion and social ascension. Conclusion: family nursing shows potential support in the face of myelomeningocele, due to its ability to apprehend the family system, evaluate it and enable intervention proposals in the care process. In this study, rehabilitation nursing was also emphasized, since it goes together with the child and the family who experience myelomeningocele.


Introduction
Considered the most common congenital malformation of the central nervous system, myelomeningocele (MMC), is characterized by the incorrect closure of the neural tube with exposure of the spinal cord and meninges, during embryonic development (1)(2) , which may be related to genetic, environmental and maternal factors, especially nutritional deficiency of folic acid, the main risk factor related to this pathology (2) .
MMC affects 1 in every thousand births in the world (3) and 1.9 for every 10,000 live births in Brazil (4) , which can be identified throughout the vertebral extension, with prevalence in the lumbar, lumbosacral and sacral regions (2,5) . This location of the lesion is related to the extent of paralysis, sphincter dysfunction and orthopedic deficiencies (5) , as well as intracranial abnormalities, such as hydrocephalus, present in 80% of the MMC cases (2) .
Due to the exposure of the spinal cord and meninges, MMC requires surgical repair in the first hours of life, preventing the spillage of cerebrospinal fluid, avoiding infections and decreasing morbidity and mortality (6) . Due to the necessary measures and procedures, individuals with MMC require specialized and multidisciplinary health services to increase their functional gains, as well as the support of their families in carrying out their daily activities, given the implications of neurogenic mobility, bladder and intestine (6)(7) .
The care required by MMC considerably exceeds that required by a child with typical development, and lasts for a lifetime (8) , also inferring greater difficulty in psychosocial interaction and lower quality of life in relation to their physical health (9) , which generates feelings of fear, insecurity and anxiety in the family, the main social support to ensure the child's growth and potential development (10) .
Thus, given the repercussion of MMC in the life of the child and his family, it is necessary to get closer to know the family's potentials, weaknesses and rearrangements, understanding the meaning of the care relationships (11) , so as to instrumentalize the performance of the nursing professional for qualified care for these families, considering the increase in the life expectancy of this population, and the gap in the literature with this focus (8,12) . In this sense, the objective was to understand the experience of families in the care of children with myelomeningocele.

Method
A field study with a qualitative approach, considering the magnitude of the phenomenon under study, recognizing the subjectivity and intersubjectivity of the relationships (13) , which referred to the theoretical perspective of Symbolic Interactionism (SI) and, as methodological framework, the Grounded Theory (GT). SI, an interpretative reference, recognizes that human behavior is established from social interactions and meanings attributed to objects and actions (14) .
This framework is potential to understand the family's experience in caring for the child with MMC, considering that individuals interpret their experiences through the meanings learned in the relationships and the social context where they are inserted (15) .
When considering the importance and breadth of the families' experience in caring for children with MMC, the choice of the GT stands out, which seeks to understand reality from the perception that a certain situation or object has for people, providing knowledge, increasing understanding and generating a significant direction for action (16) .
Twenty-eight participants from thirteen families of children diagnosed with MMC living in a city in the inland of São Paulo took part in the study. The concept of child of the Child and Adolescent Statute (Estatuto da Criança e Adolescente, ECA) was adopted (17) . The criteria for the selection of participants were the following: a) families of children diagnosed with malformation; b) family members who are able to provide understandable narratives. The participants were identified from the first letter of their kinship: mother (M), father (P, "pai" in Portuguese), grandmother (A, "avó" in Portuguese) or brother (I, "irmão" in Portuguese); with the child identified as the index case (C) of the research, followed by the order in which the interview was conducted.
The families were contacted using the snowball technique (snowball sampling), a sampling method highlighted to reach specific groups of people, which, for the initial samples, uses key-informants in order to locate them (18) ; this trigger occurred in a rehabilitation service in the municipality, with an indication of the first family and, from this, other contacts were revealed, and invitations were made via telephone. The search for families in the advancement of the research was guided by theoretical sampling, assumptions of the GT, which seeks relevant data to develop the theory, being used to substantiate the characteristics of the categories until new elements appear (16) ; this aspect determined the number of participating families, based on the experiences revealed in the statements, which began to repeat and have the necessary depth for the construction of the theoretical model (19) .
Of the four sample groups in the study, the first was made up of four families with the aim of getting closer to the experience, building the initial categories and directing the next groups. From such families, only one had a single caregiver and depended entirely on the health service and public transportation, which leads to reflections on the social vulnerability and support network, which directly influence www.eerp.usp.br/rlae 3 Bonelli MA, Borges AA, Souza ROD, Castro GVDZB, Oliveira GBS, Dupas G. the experience of caring. Thus, in order to approach families that used the public health service, they were sought in a public institution, contemplating four families that depended on the public health service and articulated a support network for care, composing the second sample group.
These first two groups were made up by schoolage children, with a gap emerging from early childhood experiences. Therefore, the third sample group apprehended the particularities of care in the initial phases of the child's growth and development, being composed of three families. The fourth group, composed of two families, validated the theoretical model and, in order to cover as much as possible the families' experience, the first validation was carried out with a family whose child This model was presented to two families for validation and constituted the final stage of the GT, important to analyze the pertinence and representativeness of the study in relation to the investigated phenomenon (20) .

All the ethical recommendations set forth in
Resolution 510/2016 were respected, and the study was approved by the Ethics and Research Committee with Human Beings under CAAE 76493617.3.0000.5504.

Results
The child's desire for autonomy and future independence is the center of the experience that  Living foggy moments is a context of family experience that runs through the entire lived experience.
In the diagnosis and birth, they face the malformation, little known or even unknown, with different disorders that can be associated, which darkens the future. This moment is usually accompanied by feelings such as shock, surprise, sadness and fear, and is also related to the way in which the professionals approach and welcome the family in the diagnosis. These feelings are symbols expressed by the families through language in order to elucidate the phase experienced: After  for the caregiver to make the change, she is the first wheelchair student, and they adapted some things, such as the mat, a few little things (MF7).
All these family strategies result from the individual and relational actions of its members, which mobilize the family system, acting cooperatively to solve the problems.

Discussion
The empirical analysis of the data allowed for the apprehension of the theoretical model of Seeking tirelessly for better health and life conditions for the child, which represents the meaning of family actions and interactions in the experience of caring for children with MMC.
In this family trajectory, the child's desire for potential development is highlighted, with autonomy and social ascension, mainly related to preserving the cognitive functions. The family seeks the contribution of the health professionals to provide care and rehabilitation.
In this perspective, rehabilitation nursing, which values family-centered care, highlighting their different needs and recognizing their individualities (21) , becomes promising, but little explored in the route of these children. by the inadequate approach of the professionals (7,10,(22)(23)(24) .
The constant interaction with health professionals who have superficial information, little empathy and no welcoming attitude, generates distrust, doubt, fear and helplessness. There is little clarity in the information, with emphasis on the different afflictions associated with MMC, such as type of injury, treatments and response to the therapies. In this context, the experiences are different and the family members build their actions and meanings through a process of symbolic interaction with themselves and with the others (25) .
The child with MMC has comorbidities and limitations that change with growth and development, which causes the trajectory to be surrounded by treatments, hospitalizations, arduous recoveries and distancing from social and school life (8) . There is suffering intrinsic to the confrontations, intensified by the complications experienced, in the face of infections, surgical approaches and uncertainty for the recoveries. The meaning attributed to the experiences influences and directs the way individuals act (14) .
The chronic condition imposed by MMC demands specialized care, which requires direct and continuous supervision by health professionals (12,(26)(27) , so as to maintain functionality, prevent harms and promote autonomy. A literature review portrays the relationship between the potential reach of better health conditions in individuals with MMC and assistance in specialized centers, with this discrepancy also associated with ethnicity and social condition (28) , so the lack of health services aimed at rehabilitation becomes an impasse in the care of children with MMC (10) , above all, with regard to the transition to self-care, as observed in this study.
The promotion of care for MMC and comorbidities, demands professional guidance, potential field of nursing, considering the specificity of procedures such as dressings, intestinal lavage and bladder catheterization. When the health team exercises effective support, it can mean a base for the family, where it builds its relationships in favor of child care, allowing it to invest in their development (12,29) , which however proved to be incipient in this study.
During this experience, the family experiences numerous deprivations and routine changes, physical and mental exhaustion, financial overload, lack of support from friends and family, which lead to social isolation (10,24,(29)(30) , adding prejudice, an important aggravating factor in this experience, as well as in the lives of other families of children with special health needs (31)(32) .
A study developed with mothers of children with MMC showed the economic burden, difficulty in accessing specialized services, school and transportation, as well as the need to adapt and/or move to another residence (22) .
The need to purchase supplies for care and support and mobility devices, when the supply of the public health service is insufficient, increases the financial burden, psychosocial issues and changes family functioning; this reality is also portrayed in other studies of families of children with MMC and other chronic health conditions (8,24) .
Another aggravating fact which emerges is that mothers, when taking care of a child with a chronic condition, quit their jobs, due to the difficulty of the duality of the routine (8,33) . Giving up professional life was also a behavior observed in this study, where five Although a number of studies demonstrate the role of primary caregiver assigned to the mother (10,12,(33)(34) , this study showed, in a predominant manner, that in families where the father was present in the family nucleus, he also exercised the role of caregiver, sharing care and enhancing the family bond. The father's participation has been evidenced in the life and care of the child with special health needs through daily care, stimulating the bond and affection of the relationships between them (35)(36) ; caring for the child in a shared way improves family interactions (36)(37) .
For the family, relating to people other than the family core is important. Some health professionals, more distant family members and friends provide significant support. The relationship with peers, that is, parents who have children in the same health condition, promotes a feeling of welcoming and belonging to society (38) . Spirituality, support strategy and coping in the route of young people with a chronic disease and their families (39) , was praised by the participants, from the diagnosis to all the experienced stages. Faith is considered a vital element in the search for meaning in the face of the malformation; the belief that it is God's will and/or that God believed in the strength of the family to take care of this child, mobilizes members in the face of difficulties.
For the health team, recognizing the importance of spirituality as a support resource allows creating strategies to strengthen this family (40) .
On the other hand, over time, the family moves towards adapting to the new routine, striving to insert the child into routine and leisure activities, seeking to act normally and feel part of society (29) . Thus, they impetuously desire that the child, despite their limitations, gains autonomy and social insertion (41) ; standing out as a strategy for this purpose is physical activity, which, in www.eerp.usp.br/rlae 7 Bonelli MA, Borges AA, Souza ROD, Castro GVDZB, Oliveira GBS, Dupas G. addition to health benefits and functional development, promotes independence, motivation and social participation (42) , such experiences also being apprehended in this study.
Regarding the perception of children and adolescents towards MMC, a study developed in Ireland shows that they are self-confident in the face of their disability, with good social and school participation (23) . Children participating in this research report on their participations, school interactions, sports and leisure, highlighting joy and enthusiasm in their social relationships and achievements.
In the context of the chronic health condition, in this case, MMC, socialization is a preponderant yearning throughout all the phases of growth and development, considered essential for the child's future. In a literature review, social participation and interaction is identified as an important strategy in the rehabilitation process, and its promotion through the available support network (43) , an action that is apprehended in the families' reports, which moves very hard to overcome limitations and acquire motor, cognitive and social skills. Nursing, despite its historical role in the art of caring, was not evidenced in the experience of these families. Thus, with the development of this model, we seek to provide nurses with subsidies to work with the family of the child with MMC. Considering the diversity of performance of the professional nurse, the highlight was for rehabilitation nursing, evidenced in the experiences, given the family members' desire to be trained to care and promote the child's autonomy. Likewise, family nursing also proves to be a potential support due to its ability to apprehend the family system, evaluate it and enable intervention proposals in the care process. Thus, the study makes an important contribution, the role of the father in the care of the child with MMC, highlighting the esteem of understanding family interactions and their potential.
As for the limitations, the fact that the study was carried out with a specific age group stands out, which points to other phenomena to be explored, and that the municipality is not a reference for treating MMC, interfering in the process of self-care and independence for the upcoming development phases. It is noteworthy that the portrayed experience does not generalize that lived by all the families, as always something new can emerge and be deepened for later inclusion in the theoretical model, characteristic of the method employed.

Conclusion
The central category denotes that the ability to love unconditionally drives the family in the face of the desire to provide better chances for the child to grow up, to develop, to be inserted in society and to be respected in view of the place reached in relation to his qualities and abilities, that "Being a child" stands out from the difficulties faced. Care may come, in addition to promoting child development, to minimize situations where it does not occur as expected, such as MMC; however, this task needs to be expanded beyond the family members, shared with the health services, making necessary resources available to the child, promoting health and reaching their physical, cognitive, emotional and social potentials.