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Family Management and socioeconomic situation of children and adolescents with neurological disorders

Manejo Familiar y situación socioeconómica de niños y adolescentes con trastornos neurológicos

ABSTRACT

Objectives:

to identify the relation between family management and socioeconomic situation of children and adolescents with neurological disorders.

Methods:

a descriptive and correlational study with 141 family members who answered a questionnaire on socioeconomic and family management information. Data collection took place between May and September 2016 in a pediatric neurology center. A descriptive and analytical analysis was carried out with the use of statistical tests in order to assess the relation of the variables researched.

Results:

a higher early childhood disease time was related with higher scores of management difficulty. There was relation between the highest family income and management skills and the lowest scores of family difficulty. The highest schooling level of mothers was associated with the lowest scores of disease impact view and family difficulty.

Conclusions:

family members with unfavorable socioeconomic situation had more difficulty with family management.

Descriptors:
Social Class; Nervous System Diseases; Child; Adolescent; Family Caregivers

RESUMEN

Objetivos:

identificar la correlación entre el manejo familiar y el estado socioeconómico de niños y adolescentes con trastornos neurológicos.

Métodos:

estudio descriptivo y correlacional con 141 miembros de la familia, que respondieron un cuestionario sobre información socioeconómica y gestión familiar. La recopilación de datos tuvo lugar entre mayo y septiembre de 2016 en un Centro de Neurología Pediátrica. Se realizó un análisis descriptivo y analítico utilizando pruebas estadísticas para evaluar la correlación entre las variables investigadas.

Resultados:

la mayor duración de la enfermedad infantil y juvenil se correlacionó con una mayor puntuación de dificultad de manejo. El mayor ingreso familiar se relacionó con un puntaje de habilidad gerencial más alto y un puntaje de dificultad familiar más bajo. La educación materna superior se asoció con una puntuación de visión más baja del impacto de la enfermedad y la dificultad familiar.

Conclusiones:

las familias en la situación socioeconómica más desfavorable tuvieron mayores dificultades en el manejo familiar.

Descriptores:
Situación Socioeconómica; Enfermedades del Sistema Nervioso; Niño; Adolescente; Cuidadores Familiares

RESUMO

Objetivos:

identificar a correlação entre o manejo familiar e a situação socioeconômica de crianças e adolescentes com distúrbios neurológicos.

Métodos:

estudo descritivo, correlacional, com participação de 141 familiares, os quais responderam a um questionário sobre informações socioeconômicas e do manejo familiar. A coleta de dados ocorreu entre maio e setembro de 2016, em um Centro de Neurologia Pediátrica. Realizou-se análise descritiva e analítica, com uso de testes estatísticos para avaliar a correlação entre as variáveis investigadas.

Resultados:

o maior tempo de doença infanto-juvenil foi correlacionado a um maior escore de dificuldade de manejo. A maior renda familiar foi relacionada ao maior escore de habilidade de manejo e ao menor escore de dificuldade familiar. A maior escolaridade materna associou-se ao menor escore de visão do impacto da doença e dificuldade familiar.

Conclusões:

as famílias em situação socioeconômica mais desfavorável tiveram maiores dificuldades no manejo familiar.

Descritores:
Situação Socioeconômica; Distúrbios Neurológicos; Criança; Adolescente; Cuidador Familiar

INTRODUCTION

Neurological disorders in childhood are estimated to be a major cause of morbidity among chronic pediatric diseases(11 Frank-Briggs A, Alikor E. Pattern of Paediatric Neurological Disorders in Port Harcourt, Nigeria. Int J Biomed Sci [Internet]. 2011 [cited 2019 Jan 18];7(2):145-9. Available from: https://pubmed.ncbi.nlm.nih.gov/23675231/
https://pubmed.ncbi.nlm.nih.gov/23675231...
). Neurological disorders include conditions such as cerebral palsy, epilepsy, spina bifida, brain tumors and traumatic injuries. Neurodevelopmental diseases include the autism spectrum, among others. All these types of disorders are related to cognitive and motor deficits that compromise activities of daily living(22 Goulardins JB, Marques JCB, Oliveira JA De. Attention deficit hyperactivity disorder and motor impairment : a critical review. Percept Mot Skills. 2017;124(2):1-16. doi: 10.1177/0031512517690607
https://doi.org/10.1177/0031512517690607...

3 Dias E, Dias A. Cerebral palsy: a brief review. Acad J Ped Neonatol. 2017;4(1):1-3. doi: 10.19080/ajpn.2017.03.555687
https://doi.org/10.19080/ajpn.2017.03.55...
-44 Sumner E, Pratt ML, Hill EL. Examining the cognitive profile of children with Developmental Coordination Disorder. Res Dev Disabil. 2016;56:10-7. doi: 10.1016/j.ridd.2016.05.012
https://doi.org/10.1016/j.ridd.2016.05.0...
).

Studies have shown that people with neurological and/or neurodevelopmental disorders require ongoing parental care(55 Alves G, Lomba G, Barbosa T, Reis K, Braga P. Crianças com necessidades especiais de saúde de um município de minas gerais: estudo descritivo. Rev Enferm Centro-Oeste Min. 2014;4(3):1310-21. doi: https://doi.org/10.19175/recom.v0i0.778
https://doi.org/10.19175/recom.v0i0.778...

6 Ansari NJR, Dhongade RK, Lad PS, Borade A, Suvarna YG, Yadav V, et al. Study of parental perceptions on health & social needs of children with neuro-developmental disability and it’s impact on the family. J Clin Diagnostic Res. 2016;10(12):SC16-SC20. doi: 10.7860/JCDR/2016/22538.9039
https://doi.org/10.7860/JCDR/2016/22538....

7 Javalkar K, Rak E, Phillips A, Haberman C, Ferris M, Tilburg M Van. Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions. Children. 2017;4(39):1-10. doi: 10.3390/children4050039
https://doi.org/10.3390/children4050039...
-88 Okido A, Hayashida M, Lima R. Original research profile of technology-dependent children in Ribeirão Preto-SP. J Hum Growth Dev [Internet]. 2012 [cited 2019 Jan 18];22(3):291-6. Available from: http://www.revistas.usp.br/jhgd/article/view/46356/50477
http://www.revistas.usp.br/jhgd/article/...
). Care demands of children with chronic diseases and effects of the disease on family life lead to the need for reorganization and adaptation to a new life arrangement. Each family manages its daily routine so that care for its members is incorporated into everyday life.(99 Knafl K, Deatrick K. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. -1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
).

It is important for health professionals to understand families’ responses to chronic childhood conditions, because families’ skills to meet the daily demands of childhood illness influences family health and child adaptation(1110 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505. doi: 10.1016/j.ijchp.2015.05.002
https://doi.org/10.1016/j.ijchp.2015.05....
). Health professionals are the agents with the greatest influence on family management(1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
).

Nursing and health team interventions serve to support family adaptation. Moreover, these professionals must define what constitutes a successful adaptation and what facilitates it. When nurses recognize these factors, they can use their knowledge and skills to help children improve their health and help families adjust to chronic conditions. The use of theoretical models contributes to the development of nursing knowledge related to family responses to chronic childhood conditions.

One model is the Family Management Style Framework (FMSF), designed to identify household responses to chronic childhood conditions(99 Knafl K, Deatrick K. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. ,1212 Knafl Kathleen A, Deatrick JA. Further refinement of the family management style framework. J Fam Nurs. 2003;9(3):232-56. doi: 10.1177/1074840703255435
https://doi.org/10.1177/1074840703255435...
). This consists of three main components: situation definition, management behavior and perceived consequences(99 Knafl K, Deatrick K. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. ,1212 Knafl Kathleen A, Deatrick JA. Further refinement of the family management style framework. J Fam Nurs. 2003;9(3):232-56. doi: 10.1177/1074840703255435
https://doi.org/10.1177/1074840703255435...
). The theoretical model defines some factors that facilitate or hinder family management, such as social networks that support families, family resources, assistance from health professionals and education(1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
).

During a FMSF conceptual analysis in 2012, the authors of the model identified few quantitative studies on demographic and socioeconomic factors that could influence the way family members define the situation of having a chronically ill child, the behaviors used to manage the disease. and perceptions about the disease consequences on family life(99 Knafl K, Deatrick K. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. ,1212 Knafl Kathleen A, Deatrick JA. Further refinement of the family management style framework. J Fam Nurs. 2003;9(3):232-56. doi: 10.1177/1074840703255435
https://doi.org/10.1177/1074840703255435...
). FMSF explores factors that contribute or not to family management, which, in turn, influence the functioning of the sick individual and the family(99 Knafl K, Deatrick K. Family management style: concept analysis and development. J Pediatr Nurs. 1990;5(1):4-14. ,1212 Knafl Kathleen A, Deatrick JA. Further refinement of the family management style framework. J Fam Nurs. 2003;9(3):232-56. doi: 10.1177/1074840703255435
https://doi.org/10.1177/1074840703255435...
).

FMSF and other family management studies advances required instrumentalization of the model. Thus, from the FMSF, the Family Management Measure (FaMM) was developed to assess how families manage chronic childhood disease and how they insert this condition into daily life(1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
). In Brazil, family management has been investigated through FMSF in situations such as childhood cancer(1313 Misko MD, Bousso RS. Managing cancer and its intercurrences: the family deciding to seek emergency care for the child [Internet]. Rev Latino-Am Enfermagem. 2007[cited 2019 Jan 15];15(1):48-54. Available from: https://www.scielo.br/pdf/rlae/v15n1/v15n1a08.pdf
https://www.scielo.br/pdf/rlae/v15n1/v15...
), pediatric palliative care and in families of children who received liver transplantation(1414 Mendes-Castillo AMC, Bousso RS, Ichikawa CR de F, Silva LR. The use of the Family Management Style Framework to evaluate the family management of liver transplantation in adolescence. Rev Esc Enferm USP. 2014;48(3):430-7. doi:10.1590/S0080623420140000300007
https://doi.org/10.1590/S008062342014000...
). The use of the quantitative tool is recent in Brazil. Family management mediates contextual factors and the functioning of children and families(1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
). These aspects have important implications for interventions that can support families.

OBJETIVES

To identify the relation between family management and socioeconomic situation of children and adolescents with neurological disorders.

METHODS

Ethical aspects

This research was approved by the Research Ethics Committee, under Opinion 1,299,529. The researchers respected the research involving human beings ethical principles, according to Resolution 466/2012 of the Brazilian National Health Board (Conselho Nacional de Saúde).

Design, place, and period of study

This is a descriptive, correlational and cross-sectional study, conducted between May and September 2016. STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) guidelines were used to guide the methodology. The study site was a reference center for care for children with neurological diseases by the Brazilian Unified Health System (Sistema Único de Saúde) in the state of Paraná.

Population, sample; inclusion and exclusion criteria

Participants were family members whose children/adolescents were undergoing treatment for autism spectrum disorder, epilepsy or cerebral palsy. A convenience sample was obtained, which was calculated using the largest number of medical appointments at the study site for the year prior to the planning of this research. These conditions defined the sample size, namely autism spectrum disorder: 35; epilepsy: 39; cerebral palsy: 67.

In this research, the inclusion criteria used were followed in the study, which assessed the psychometric properties of the FaMM tool, which the adapted version and validity was used in this study(1110 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505. doi: 10.1016/j.ijchp.2015.05.002
https://doi.org/10.1016/j.ijchp.2015.05....
): family members who lived in the same house with the children/adolescents and took care of these individuals (hygiene, food, mobility, mobility, elimination, health care, therapeutic support, socialization and protection); family members who provide care to children/adolescents diagnosed with the disease for at least six months before the survey; family caregivers of children/adolescents who were not hospitalized and did not receive emergency care in the two months prior to the survey. These criteria are justified by the search for family management in situations where there are no recent crises(1110 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505. doi: 10.1016/j.ijchp.2015.05.002
https://doi.org/10.1016/j.ijchp.2015.05....
). Family members whose children were under two years of age or over 19 were excluded, in addition to family members under 18.

Study protocol

Data collection was conducted in two steps. In the first, data were extracted from medical records to identify children/adolescents in the age group foreseen for the study. In the second stage, family members were invited to participate in the research on the day of the child/adolescent’s appointment.

Two tools were used, one of which was to collect demographic and socioeconomic data from families and the clinical situation of the child/adolescent; the other was the adapted and validated Brazilian version of FaMM(1515 Ichikawa CR de F, Bousso RS, Misko MD, Mendes-Castillo AMC, Bianchi ERF, Damião EBC. Cultural adaptation of the Family Management Measure among families of children and adolescents with chronic diseases. Rev Latino-Am Enfermagem. 2014;22(1):115-22. doi: 10.1590/0104-1169.2978.2379
https://doi.org/10.1590/0104-1169.2978.2...
-1616 Bousso R, Ichikawa C, Misko M, Santos M, Baliza M, Mendes-Castillo A, et al. Validation of family management measure for the Brazilian culture. Rev Bras Enferm. 2017;70(6):1151-8. doi:10.1590/0034-7167-2016-0326
https://doi.org/10.1590/0034-7167-2016-0...
). In the first tool, the following demographic variables were collected: age and gender of family members and children/adolescents, and degree of relationship with the child/adolescent. Children and adolescents clinical variable was collected: time in which the child/adolescent lives with neurological disease. Finally, the variables of socioeconomic status were collected: access to early childhood education; type of education (regular/special); type of school (private/public); years of maternal education and per capita family income.

The second tool, FaMM, is made up of 53 items, 45 of which apply to all family members, while eight apply only to those with spouses/partners, subdivided into six dimensions. These dimensions were elaborated from the subcategories of the main FMSF components.

  1. Child identity: indicates the degree of independence of the child; Higher scores indicate that the child is leading a normal life, from the perspective of family members.

  2. Management skills: refers to the perception of parents about their skills to take care of their children; Higher scores indicate that parents feel better able to perform care.

  3. Management effort: refers to the perception of the effort involved in disease management; the higher the score, the higher the effort.

  4. Family difficulty: indicates parents’ perception of the fact that having a sick child makes life difficult; the higher the score, the higher the difficulty.

  5. Disease impact view: addresses the family’s perception of the severity of the disease and the complications to the child’s and family’s health; higher scores indicate greater severity and concern of the family with the management of the disease.

  6. Mutuality among parents: higher scores indicate greater reciprocity among partners in coping with the disease(1110 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505. doi: 10.1016/j.ijchp.2015.05.002
    https://doi.org/10.1016/j.ijchp.2015.05....
    ). Answers to items were calculated on a Likert scale, with a score from one to five, with one indicating “I strongly disagree” while five indicating “I strongly agree”(1110 Knafl K, Deatrick J, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. 2011;36(5):494-505. doi: 10.1016/j.ijchp.2015.05.002
    https://doi.org/10.1016/j.ijchp.2015.05....
    ).

Analysis of results, and statistics

Descriptive analysis was used to present demographic data of families, children and adolescents, as well as socioeconomic status. There was decision to categorize these variables as absolute (n) and relative (%) values. Continuous variables were categorized and also presented as minimum, maximum and standard deviation (SD) values.

In estimating household per capita income, income from work-related activities and social benefits obtained from the government was included. Results were converted to minimum wage units, which corresponded to 880 reais (reais is the Brazilian currency; 880 reais is approximately 220 US dollars) in 2016. In Brazil, children and adolescents with disabilities, whose families have financial difficulties to support them, may receive the Government Continued Assistance Benefit. To grant it, children/adolescents must belong to families with per capita income below one quarter of the minimum wage(1717 Palácio do Planalto (BR). Decreto no 6.214, de 26 de Setembro de 2007[Internet]. 2007 [cited 2009 Jan 18]. Available from: http://www.planalto.gov.br/ccivil_03/_Ato2007-2010/2007/Decreto/D6214compilado.htm
http://www.planalto.gov.br/ccivil_03/_At...
), equivalent to 220 reais (about 55 US dollars) in 2016. In the present study, 49.60% (n = 70) of the families reported receiving this grant.

Family management dimensions were calculated according to the guidelines established by the researchers who elaborated the FaMM(1818 Knafl J, Deatrick A, Gallo J, Dixon M, Grey G, Knafl JO. Family Management Measure. The University of North Carolina at Chapel Hill. School of Nursing [Internet]. 2012 [cited 2016 Jan 30]. Available from: http://nursing.unc.edu/research/office-of-research-support-consultation/resources/family-management-measure-famm/
http://nursing.unc.edu/research/office-o...
) and, subsequently, presented in mean score and SD.

To assess the relation between the variables, nonparametric statistical techniques were used, because the Shapiro-Wilk test showed that the variables did not present normal distribution. Spearman’s correlation coefficient (Rho) was used to test the correlation between continuous variables (family management dimension score versus child/adolescent disease duration, years of maternal education, family per capita income). In this test, gross values were used.

The Mann-Whitney U test was used to compare the mean scores of each family management dimension according to the nominal categorical variables (type of education and type of school). The significance level was set at p≤0.05. Statistica 7.0 software was used for statistical analysis.

RESULTS

Demographic, and socioeconomic situation characterization

Demographic and socioeconomic situation data are presented in Table 1. The mean age of the family members was 37.8 years, with a minimum and maximum of 21 to 60 years, SD 2.1. The mean age of children/adolescents was 9.5 years, with a minimum and maximum of 2 to 17 years, SD of 1.7. There was a predominance of participants between 31 and 40 years old, female, who were mothers of the children/adolescents. Regarding children and adolescents, a predominance of males and age between two and ten years was identified. It was found that children/adolescents lived with the disease between five and nine years. Predominantly, they attended regular school, had access to public school, 43% of families had per capita income of up to ½ minimum wage, while 37% had ½ to minimum wage. In 47.5% of families, mothers had nine to eleven years at school, corresponding to elementary or high school.

Table 1
Demographic and socioeconomic situation data (n = 141), Curitiba, Paraná, Brazil, 2016

Relationship of socioeconomic situation with family management

It was found that the longer the duration of childhood illness, the lower the child identity score, the higher the family difficulty score and disease impact view (Table 2). In relation to family management with per capita family income, it was found that the higher the income, the higher the management skills score, the lower the family difficulty score and the disease impact view. Furthermore, it was found that the higher the maternal education, the higher the child identity score, the lower the family difficulty and disease impact view scores.

Table 2
Relationship of family management dimensions with disease duration, years of maternal study and per capita family income (n = 141), Curitiba, Paraná, Brazil, 2016

According to Table 3, children/adolescents studying in regular education obtained higher mean scores in the child identity, management skills and mutuality among parents dimensions. In situations where children/adolescents attended special education, management effort mean scores, family difficulty and disease impact view were higher.

Table 3
Descriptive analysis of family management dimensions with type of education and school of children/adolescents(n = 141), Curitiba, Paraná, Brazil, 2016

For those studying in public schools, mean scores for family difficulty and disease impact view were higher. In the case of those who attended private schools, the management skills score mean was higher (Table 3).

Figure 1 presents a synthesis of the variables researched. Families with greater difficulties in family management were those who had the following conditions: longer duration of childhood and youth disease; situations in which children/adolescents attended special education and had access to public schools; families with lower income and lower maternal education.

Figure 1
Synthesis of the relationship between socioeconomic situation and family management dimensions, Curitiba, Paraná, Brazil, 2016

Note:> highest score; <lower score; aRho - Spearman’s correlation coefficient; U Mann-Whitney test; * p≤0.05.


In the case of families whose children were in regular school, had access to private school, the per capita income was higher and the mothers had more years of schooling, and family management was more successful.

DISCUSSION

Children and adolescents with neurological diseases have complex needs that can challenge families in managing such conditions. Just as they report positive experiences in having a child with chronic illness, there are several stressors that play a critical role in how a family can continually manage their needs and those of those individuals(1919 Dinora P, Bogenschutz M. Narratives on the factors that influence family decision making for young children with autism spectrum disorder. J Early Interv. 2018;40(3):1-17. doi: 10.1177/1053815118760313
https://doi.org/10.1177/1053815118760313...
-2020 Nuri RP, Aldersey HM, Ghahari S. Needs of families of children with cerebral palsy in Bangladesh: A qualitative study. Child Care Health Dev. 2018;45(1):36-44. doi:10.1111/cch.12624
https://doi.org/10.1111/cch.12624...
). The child’s identity and impact view show the family perception of the child’s/adolescent’s abilities, which are linked to the understanding of the disease, as well as its demands and associated limitations(1010 Knafl K, Deatrick J, Havill N. Continued development of the family management style framework. J Fam Nurs. 2012;18(1):11-34. doi: 10.1177/1074840711427294
https://doi.org/10.1177/1074840711427294...
). The longer the child lives with the disease, the more noticeable are the signs of neurological impairment due to the particularities in child development(2121 Sharma R, Sinha A. Physical profile of children with cerebral palsy in Jalandhar district of Punjab India. Indian J Cereb Palsy. 2015;1(1):9. Doi: 10.4103/wkmp-0072.153557
https://doi.org/10.4103/wkmp-0072.153557...
). Greater dependence on children generates greater demand for care, causing families to face difficulties and make intense efforts to manage them(2222 Schiariti V, Sauve K, Klassen AF, O’Donnell M, Cieza A, Mâsse LC. “He does not see himself as being different”: the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy. Dev Med Child Neurol [Internet]. 2014[cited 2016 Sep 24];56(9):853-61. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24773255
http://www.ncbi.nlm.nih.gov/pubmed/24773...
).

Commonly, individuals with autism have changes in communication, social interaction and behavior, and in many cases other comorbidities(2323 DSM-5. Transtornos Depressivos - DSM - 5 [Internet]. Artmed, editor. Manual Diagnóstico E Estatístico De Transtornos Mentais - DSM - V. Porto Alegre; 2014 [cited 2019 Jan 18]. 948 p. Available from: http://www.clinicajorgejaber.com.br/2015/estudo_supervisionado/dsm.pdf
http://www.clinicajorgejaber.com.br/2015...
). Children/adolescents with epilepsy and cerebral palsy may present physical, emotional, developmental, behavioral changes, among others, which require health care, exceeding routine ones(2424 Boyle C, Boulet S, Schieve L, Cohen R, Blumberg SJ, Yeargin-Allsopp M, et al. Trends in the prevalence of developmental disabilities in US children, 1997-2008. Pediatrics. 2011;127(6):1034-42. doi: 10.1542/peds.2010-2989
https://doi.org/10.1542/peds.2010-2989...
). In addition to health-related needs, these children/adolescents have educational demands. They are not always able to participate in the same activities as their peers due to limitations related to the disease, as well as structural barriers that prevent them from accessing environments(2020 Nuri RP, Aldersey HM, Ghahari S. Needs of families of children with cerebral palsy in Bangladesh: A qualitative study. Child Care Health Dev. 2018;45(1):36-44. doi:10.1111/cch.12624
https://doi.org/10.1111/cch.12624...
).

Families often seek regular education for children without developmental disorders. A study involving observation of functional and motor skills showed that more independent children and adolescents needed less school assistance(2525 Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012;129(2):256-64. doi: 10.1542/peds.2010-1371
https://doi.org/10.1542/peds.2010-1371...
). On the other hand, those with lower functional and motor skills, intellectual, emotional and language disabilities attended special education(2626 Rézio GS, Cunha JOV, Formiga CKMR. Estudo da independência funcional, motricidade e inserção escolar de crianças com paralisia cerebral. Rev Bras Educ Espec. 2012;18(4):601-14. doi: 10.1590/S1413-65382012000400005
https://doi.org/10.1590/S1413-6538201200...
) thus, they require more school assistance. A study in the United States showed that most children with comorbidities were enrolled in special education courses(2525 Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012;129(2):256-64. doi: 10.1542/peds.2010-1371
https://doi.org/10.1542/peds.2010-1371...
).

Correspondingly, in Brazil, people with more serious health problems(2727 Paula CS, Ribeiro SH, Fombonne E, Mercadante MT. Brief report: prevalence of pervasive developmental disorder in Brazil: a pilot study. J Autism Dev Disord. 2011;41(12):1738-42. doi:10.1007/s10803-011-1200-6
https://doi.org/10.1007/s10803-011-1200-...
), higher levels of physical disability and comorbid disabilities attend special education(2828 Santos LHC, Grisotto KP, Rodrigues DCB, Bruck I. Inclusão escolar de crianças e adolescentes com paralisia cerebral: esta é uma realidade possível para todas elas em nossos dias? Rev Paul Pediatr. 2011;29(3):314-9. doi: 10.1590/S0103-05822011000300002
https://doi.org/10.1590/S0103-0582201100...
). The results of these studies converge with those of the current research, as they show that these children have greater restrictions and, therefore, family members invest more efforts and have difficulties in management, as well as in the perception of disease severity.

Regarding the type of school that children/adolescents in this study have access (public or private), for each enrollment in private school, 10 were observed in public schools, proportionally. Unlike in the Brazilian population, in 2014, every four enrollments in the public school found one in particular among individuals with at least one disability (visual, auditory, motor, mental or intellectual)(2929 Ministério da Educação (MEC). Evolução do número de matrículas na educação básica por modalidade e etapa de ensino - Brasil - 2008/2014 [Internet]. 2015 [cited 2019 Jan 19]. Available from: http://portal.mec.gov.br/index.php?option=com_docman&view=download&alias=17044-dados-censo-2015-11-02-materia&Itemid=30192
http://portal.mec.gov.br/index.php?optio...
).

In a study on the determinants of education costs in Brazil, it was found that the decision of families to enroll their children in private schools is related to the level of maternal education, household income, school costs and availability of public and private schools in the region where they live. However, the most consistent predictive factor is household income, because the higher the income, the more likely children are to attend private institutions(3030 Curi AZ, Menezes-Filho NA. Os Determinantes dos Gastos com Educação no Brasil. Pesquisa e Planejamento Econômico [Internet]. 2010 [cited 2019 Jan 19];4(1):1-39. Available from: http://repositorio.ipea.gov.br/handle/11058/5102
http://repositorio.ipea.gov.br/handle/11...
). Thus, difficulties in the management by families of children who study in public schools may be related to the limitation of financial resources.

People with special educational needs require specialized physical and human resources from educational institutions(3131 Silva A, Arruda A. O Papel do Professor Diante da Inclusão Escolar. Rev Eletrônica Saberes Educ [Internet]. 2014 [cited 2019 Jan 19];5(1):1-29. Available from: https://docs.uninove.br/arte/fac/publicacoes_pdf/educacao/v5_n1_2014/Ana_Paula.pdf
https://docs.uninove.br/arte/fac/publica...
). This depends on financial support to maintain educational standards for this population, which is not always offered by the public education system(3232 Vital L, Pires M, Alves L. Inclusão Social nas escolas regulares: principais dificuldades enfrentadas pela equipe escolar. Rev Profissão Docente On-line [Internet]. 2010 [cited 2019 Jan 19];10(21):107-26. Available from: http://www.revistas.uniube.br/index.php/rpd/article/view/211/201
http://www.revistas.uniube.br/index.php/...
). The public school system may be the only way for children to be educated when they cannot afford to pay for private services, because in many situations family members need to stop working to take care of the child. Consequently, there is a reduction in the family’s financial resources. Thus, they direct these resources to areas that they consider as priorities, such as housing costs and child health care, as well as indirect costs, such as transportation to take the child/adolescent to medical appointments, food, among others(2020 Nuri RP, Aldersey HM, Ghahari S. Needs of families of children with cerebral palsy in Bangladesh: A qualitative study. Child Care Health Dev. 2018;45(1):36-44. doi:10.1111/cch.12624
https://doi.org/10.1111/cch.12624...
). Thus, families may face difficulties in finding a financial balance.

A study conducted in the United States with family members of children with asthma showed an association between higher family income and greater management skills(3333 Gibson-Young L, Turner-Henson A, Gerald LB, Vance DE, Lozano D. The Relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. J Fam Nurs [Internet]. 2014 [cited 2019 Jan 18];20(4):442-61. Available from: http://jfn.sagepub.com/cgi/doi/10.1177/1074840714552845
http://jfn.sagepub.com/cgi/doi/10.1177/1...
), similar to the present study. However, lower income was related to greater family effort(3333 Gibson-Young L, Turner-Henson A, Gerald LB, Vance DE, Lozano D. The Relationships among family management behaviors and asthma morbidity in maternal caregivers of children with asthma. J Fam Nurs [Internet]. 2014 [cited 2019 Jan 18];20(4):442-61. Available from: http://jfn.sagepub.com/cgi/doi/10.1177/1074840714552845
http://jfn.sagepub.com/cgi/doi/10.1177/1...
). Low income is a difficulty faced by families of children/adolescents with chronic diseases. In addition to emotional distress, the lack of financial resources emerges as a stalemate for the desired treatment and recovery. Thus, families may feel helpless in the face of childhood illness(3434 Santos LM, Valois HR, Santos SSBS, Carvalho ESS, Santana RCB, Sampaio SS, et al. Applicability of theoretical model to families of children with chronic disease in intensive care. Rev Bras Enferm [Internet]. 2014 [cited 2019 Apr 25];67(2):187-94. Available from: http://www.gnresearch.org/doi/10.5935/0034-7167.20140024
http://www.gnresearch.org/doi/10.5935/00...
).

Lower-income families often depend on the public health system. Patients may be slow to access services because the demand for this type of care is higher(3535 Silva CR, Carvalho BG, Cordoni Júnior L, Nunes E de FP de A. Difficulties in accessing services that are of medium complexity in small municipalities: a case study. Cien Saude Colet. 2017;22(4):1109-20. doi: 10.1590/1413-81232017224.27002016
https://doi.org/10.1590/1413-81232017224...
)and thus families may face difficulties. In Brazil, in order to gain access to specialized services in the public health system, it is necessary to obtain the referral of professionals from the Basic Health Unit to specialized services, which may require waiting time.

On the other hand, families with higher incomes may have faster access to services and/or resources they want for child/adolescent care(3636 Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M, et al. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health Dev. 2010;36(1):63-73. doi: 10.1111/j.1365-2214.2009.00989.x
https://doi.org/10.1111/j.1365-2214.2009...
). That way, they can be more satisfied and better able to manage available care resources.

Another important aspect related to family skills identified in this study was maternal schooling. Mothers with higher education have greater skills to seek resources for child/adolescent health and support networks(3737 Mangrio E, Hansen K, Lindström M, Köhler M, Rosvall M. Maternal educational level, parental preventive behavior, risk behavior, social support and medical care consumption in 8-month-old children in Malmö, Sweden. BMC Public Health [Internet]. 2011 [cited 2019 Jan 15];11(1):891. Available from: http://www.biomedcentral.com/1471-2458/11/891
http://www.biomedcentral.com/1471-2458/1...
). Nevertheless, those mothers with fewer years of schooling may have greater difficulties in managing childhood disease, and their child may have greater limitation related to the disease, as expressed in the disease impact view dimension.

In a study conducted in Greece, the correlation of sociodemographic characteristics with childhood neurological development was examined; Maternal higher education was found to be associated with better scores in childhood neurodevelopment(3838 Koutra K, Chatzi L, Roumeliotaki T, Vassilaki M, Giannakopoulou E, Batsos C, et al. Socio-demographic determinants of infant neurodevelopment at 18 months of age: Mother-Child Cohort (Rhea Study) in Crete, Greece. Infant Behav Dev. 2012;35(1):48-59. doi: 10.1016/j.infbeh.2011.09.005
https://doi.org/10.1016/j.infbeh.2011.09...
). A higher level of maternal education contributes to the understanding of children’s health. In addition, mothers with higher education are more frequent users of health services, thus more closely monitoring the health of their children(3939 Balogun SA, Yusuff HA, Yusuf KQ, Al-Shenqiti AM, Balogun MT, Tettey P. Maternal education and child immunization: the mediating roles of maternal literacy and socioeconomic status. Pan Afr Med J [Internet]. 2017 [cited 2019 Jan 15];26(24):1-8. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5491723/
https://www.ncbi.nlm.nih.gov/pmc/article...
).

Study limitations

Despite obtaining a statistically significant correlation between the variables, associations were considered low to moderate. This fact limits the results of this study, which, therefore, should be interpreted with caution. Therefore, further studies with larger samples are needed to confirm the identified associations. Nevertheless, this study is considered relevant as it explores family management in culture outside the United States.

Contributions to nursing, health and public policies

The relationship of socioeconomic aspects with family management provides health professionals with a knowledge base to support families in the organization of care, as well as broadening the support network to obtain resources to assist them in managing child therapy and family needs.

Public policies for early childhood education and social support are important forms of protection to ensure families access to services, enabling the broadening of the potential of care for this public, as well as achieving good child health outcomes and adapting families to chronic disease. The results from this study are relevant for policy makers and managers, as they can be considered in the development process and in the implementation of policies aimed at serving these families.

CONCLUSIONS

Families with unfavorable socioeconomic conditions had greater difficulty in family management. Understanding the intersection between socioeconomic factors and family management is important to enable professionals to implement interventions to help these families.

  • FUNDING
    This study was funded by the Brazilian National Council for Scientific and Technological Development (Conselho Nacional de Desenvolvimento Científico e Tecnológico), Ministry of Technology, Science and Information (MCTIC) with resources obtained by the Universal Project approved by the MCTIC call/ CNPq 01/2016.

ACKNOWLEDGMENT

A special thanks to Dr. Paulo Ricardo Bittencourt Guimarães, Department of Statistics, Universidade Federal do Paraná, for his advice on statistical analysis.

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Edited by

EDITOR IN CHIEF: Antonio José de Almeida Filho
ASSOCIATE EDITOR: Rafael Silva

Publication Dates

  • Publication in this collection
    17 June 2020
  • Date of issue
    2020

History

  • Received
    11 Feb 2019
  • Accepted
    10 Aug 2019
Associação Brasileira de Enfermagem SGA Norte Quadra 603 Conj. "B" - Av. L2 Norte 70830-102 Brasília, DF, Brasil, Tel.: (55 61) 3226-0653, Fax: (55 61) 3225-4473 - Brasília - DF - Brazil
E-mail: reben@abennacional.org.br