Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders *

ABSTRACT Objective: To investigate the relationship of family management with sociodemographic and physical dependence aspects of children and adolescents with neurological impairment. Method: Descriptive, cross-sectional study conducted at a child neurology center. A non-probabilistic sample was obtained from 141 family members who answered two instruments: a) Sociodemographic condition of families; b) Family Management Measure. In the statistical analysis, we used the Spearman Coefficient and the Mann Whitney Test. Results: the longer the specialized care time, the lower the identity score (rs = - 0.209, p = 0.01); the higher the effort score (rs = 0.181, p = 0.03), the family difficulty score (rs = 0.239, p = 0.001) and the impact of the disease on family life (rs = 0.213, p = 0.01). The families of children and adolescents with physical dependence for activities of daily living presented a higher score in the following dimensions: management effort (<0.001), family difficulty (p = 0.004) and perception of disease impact (p = 0.001). Conclusion: There was evidence of a correlation between management with sociodemographic and child dependence aspects, with an association between management difficulty and longer time of child and adolescent care.


Introduction
Neurological disease in children and adolescents is a worldwide reality (1)(2)(3) . A retrospective study estimated that in the United States approximately 11% of the 960,020 hospitalizations of children aged 29 days to 19 years presented a neurological disease (4) . In Brazil, from 2002 to 2011 about 0.5% of 180,298 live births had some congenital malformation, of which 16.2% were linked to the central nervous system (5) .
In 2013, it was found that 1.3% of 200.6 million people presented physical restraint, of which 0.3% had occurred since birth and 1% was acquired. With regard to these people, 46.8% had an intense or moderate degree of limitation or could not perform normal activities of daily living (6) . Thus, it is evident that a child or adolescent with neurological impairment and physical dependence on daily tasks requires a more complex care. This calls for greater family involvement in the daily life of this population (7) . This opens discussion on the family management, that refers to the "role of the family while responding to the disease and the various health care situations" of its member with neurological disease (8). Family management is anchored in the Family Management Style Framework (FMSF), with the aim of identifying how the family, as a unit of people, context and situations, responds to the illness of one of its members (9) .
In 2011, an instrument originated from the FMSF, the Family Management Measure (FaMM) was published (10) . This was elaborated with the objective of complementing other forms of evaluation of family adaptation in situations of chronic diseases. This initiative also aimed to broaden its applicability to various contexts of childhood chronicity, such as type-1 diabetes (11)(12) and cancer (13) , in addition to verifying whether the family management is focused on the usual routines of life or in the demands related to the child's disease (14) regarding the need to change the parents' employment for the organization of child care (15) . Such a tool facilitates the investigation of family management over time, comparing it in the different life cycles of the child and the family, thus contributing to the development of interventions in family management considered problematic (10) . Besides being a useful instrument for clinical practice, it also applicable in researches (16) , since the application of the FaMM allows knowing important aspects to be considered in the nursing professional practice (17) .
The usefulness of the FaMM has been recognized in international studies as a way to help professionals in the support to families for the management of children and adolescents in situations of chronic diseases, however, in Brazil, the researches with this instrument have been carried out for the adaptation and validation of the Family Management Measure tool (18)(19) . In view of this, it would be relevant to use it to investigate family management in the context of chronic diseases in Brazil, although there are some national studies on the theme that focus mainly on the impact of diagnosis, social support and coping strategies adopted by families of children with chronic diseases (20)(21) . Considering that many of these families need to change their daily lives in order to adapt to the demands generated by the child or adolescent's disease, there must be investigation on the relationship between the sociodemographic aspects and the physical dependence of the child/adolescent with the family management. Families whose children were under the age of two and whose adolescents were above the age of 19 were

Data collection was performed between
May and September 2016 through face-to-face interviews, using two instruments, which were read by interviewers and answered by family members.
The first instrument, named Family's Condition, was prepared by the researchers, who had performed two pilot tests for adjustments before the beginning of the data collection. The initial pilot test was performed Measure (10) , named in Brazil as "Medida de Manejo Familiar (18)(19) , composed of 53 items that were answered by a five-point Likert-type scale, in which one indicated 'I totally disagree' and five indicated 'I totally agree' (10) . This generates a score, in which the minimum and maximum value is determined by the authors of this tool according to the number of items per dimension (23) .
The instrument is composed of 53 items in six  (23) and presented in mean score, SD, minimum and maximum values.
To evaluate the correlation between the variables, non-parametric statistical techniques were used.  All study participants were informed of the objectives of the study and signed the Informed Consent Form in two copies, guaranteeing the anonymity and privacy of the information. Table 1  (n = 62) had access to at least one medicine from the public health system.

Results
Regarding physical dependence, 65% (n = 93) were dependent on one or more ADL. Of these, 84% (n = 79) were related to grooming and 81% (n = 76) to performing their own hygiene.
The family management scores ( Table 2)  In the correlation of the family management with the physical dependence of children and adolescents in the ADL, as presented in Table 4, there was a significant relationship in the ADL of feeding, grooming and hygiene with the dimension of management ability. In the six

Discussion
Researches have consistently found that children and adolescents with neurological disorders require various forms of care that generate challenges for their family members to manage them on a daily basis (24)(25) .
In this research, we investigated the relationship of   In families where the children/adolescents did not receive a public transportation fare exemption, there was a statistically significant relationship with the management ability dimension, in which the mean score was higher than those who received it. The families of the children/adolescents who received at least one medicine were significantly correlated with the dimensions child's identity and management effort.
Those who did not receive medication had a higher mean score in the child's identity dimension.
thus interfering directly with the child/adolescent's perception of identity.
The management ability score was positively associated with the families when their children did not receive the CCG, did not obtain exemption of transportation fare and were independent for the ADL of grooming and feeding. Therefore, these family members felt more capable to perform the necessary care (10) . The aforementioned benefits are linked to the low-income population (29-30) ; thus, it is understood that the greater purchasing power allows access to resources to support the care for children and adolescents.
With regard to the social grant of transportation exemption for the families that need it, it is verified that having availability and accessibility to transportation contributes to improve families' lives, since it allows the displacement for multiprofessional consultation and for the social activities outside the domestic scope (31) .
However, in this research, it was found that families with higher management ability scores did not use this benefit. This benefit has a direct correlation with family income (30) ; in view of this, the families that do not receive the benefit have greater purchasing power.
Family members perceived themselves more capable of caring for those who did not present physical limitations for feeding, hygiene and grooming activities. Children and adolescents' demands may require the reduction or interruption of work activities of family members, with consequent decrease in family income (32) , making families need social support.
Fine motor activities, such as self-care, involving hygiene and grooming, are difficult areas for individuals with neurological impairments. Also, more severe neurological conditions affect more strongly children's bimanual ability (33) .
The family difficulty score indicates parents' perception of how having a child with illness makes life more difficult (10) . This was negatively correlated with longer time of care in a specialized service of neurology and with those families in which the children/adolescents presented dependence in the ADL and, in a positive way, with the families that did not receive the CCG.
Pediatric involvement due to the symptoms of the disease causes the caregiver to spend long periods meeting the needs of children and, thus, to move away from social interaction, family and friends (34) . In addition, family members incessantly seek general and specialized treatment, sometimes facing challenges in order to achieve them due to the limited number of such procedures (35) and unavailability of public services (36) .
The functional limitations of locomotion, when associated with lower socioeconomic conditions, can generate greater financial loss due to higher costs with assistance technologies, for locomotion, home adaptations, transportation and instructions/trainings of family members to use these technologies (37) , making families face intense difficulties. It was verified in a study that a large part of the families of children/ adolescents with greater functional dependence received CCG (38) .
The family effort score refers to the perception of the work they develop to manage the disease (10) . This was negatively correlated with a longer time of service in specialized neurology service, the receiving of CCG and of medication from the public health system.
This result is in line with another study carried out in China with 538 caregivers of children/adolescents at more advanced ages, in which there was greater difficulty in family management (39) . It is common for children and adolescents with neurological disease to require continuous specialized care due to their motor, visual, hearing, neurological, psychiatric and neurosurgical follow-up and drug therapy (40) . Thus, the family routine encompasses the mobility for services of physiotherapy, equine therapy, hydrotherapy, occupational therapy, speech therapy, among others (32) , which requires from the family greater efforts to meet all the demands of care. In addition, individuals with motor deficit often need assistance through a wheelchair, walker and even the support of another person (40) , so that the greater the physical dependence, the more intense are the activities of care for the family members (41) .
In a study of 610 children who used wheelchairs in the home environment, 88% (n = 537) of them were manual, 2% (n = 11) had electric chair and 10% (n = 62) were mixed. Of the 599 children who used a manual chair, 28% (n = 165) of the children and adolescents were able to move by themselves and 72% (n = 434) needed a person to push them (42) . Mothers with older and dependent children state that care is more laborious due to the development of actions such as bathing, assisting in the use of the toilet, grooming and moving the child (43) . Another variable correlated as greater effort for families was the CCG, in Brazil, as a social assistance policy that supports families in basic needs and which, in many situations, is their only source of income (46) .
The economic condition of the families is related to the maintenance of the children and adolescents' therapy (37) .
The score of the perception of disease impact indicates the family's perception of the severity of the disease and its complications regarding the health of the children/adolescents and the families. This dimension was negatively correlated with the longer time of service in specialized neurology service, the receiving of CCG and with the situations in which the children/adolescents were dependent for the ADL. Higher scores indicate greater severity and family's concern in managing the disease.
The future implications of the neurological condition commonly involve the parents' concern about the future life of these individuals, on who will take care of them in their absence (28) , on aspects related to professional life, in which the performance of these children and adolescents is related to the evolution of the disease (47) .
In this aspect, the intellectual quotient is a predictive factor for socialization and professionalization; however, motor independence may be related to the ability to maintain a job (48) . The implications of transition to independent adult life involve the housing condition (49) and married life, which, because of illness, may lead parents to think that children will be rejected and unable to maintain a marriage relationship (50) .
In addition, there is concern about money management for the maintenance of treatment of children and adolescents with neurological diseases (51) .
In the present study, families receiving CCBs presented greater concern and perceived the disease as more impacting. This factor may be related to the situation of lower income and to the disease. These findings are consistent with previous research that indicates that sociodemographic aspects of families and children/ adolescents influence family management (15,39,52) .
The mean scores of the dimensions of family management obtained in this study were compared with those provided by other surveys of families in other situations of chronic diseases. In an investigation with families of children/adolescents surviving cancer (13) and another focusing on diabetes mellitus (11) , the scores of child's identity and management ability were higher when compared to the families of the present study. On the other hand, the dimensions of management effort and perception of disease impact in the study of diabetes mellitus had a mean of 13.82 and 25.55, respectively (11) , and family difficulty in the study of children surviving cancer had a mean score of 34.60 (13) , which were similar to those of this study.
The management effort score of children/adolescents surviving cancer was 10.01 (13) , thus, lower than that of this survey.
In addition, as in this study, others presented greater standard deviation in the family difficulty dimension than in the other dimensions (13,15) . In view of the dissimilarity between the responses of the families regarding management difficulties, we suggest further qualitative research that seeks to understand these difficulties.
The present research showed aspects that

Conclusion
There was a correlation between family management and sociodemographic and physical dependence aspects. This association showed that the management ability of the families was positive in the conditions where the children/adolescents did not need social grants, access to medications from the public health system and were physically independent for the ADL. There was also an association between situation. This tool can help nursing professionals to identify how families deal with the disease and, thus, to propose strategies to deal, in a more adequate way, with the relatives in the advance of a more effective management of the child/adolescent with a chronic disease.