Relationship of family management with sociodemographic aspects and children’s physical dependence in neurological disorders* * Paper extracted from master’s thesis “Manejo familiar da criança e do adolescente com doença neurológica e a sua relação com a estrutura familiar e dependência física: um estudo transversal”, presented to Universidade Federal do Paraná, Curitiba, PR, Brazil. This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brasil (CAPES) - Finance Code 001.

Gisele Weissheimer Verônica de Azevedo Mazza Vanessa Ferreira de Lima Maria de Fátima Mantovani Márcia Helena de Souza Freire Paulo Ricardo Bittencourt Guimarães About the authors

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.

Descriptors:
Family Nursing; Disable Persons; Child; Adolescent; Neurology; Family

RESUMO

Objetivo:

investigar a relação do manejo familiar com aspectos sociodemográficos e de dependência física de crianças e adolescentes com agravo neurológico.

Método:

estudo descritivo, transversal, realizado em um centro de neurologia infantil. Obteve-se amostra não probabilística de 141 familiares que responderam a dois instrumentos: a) Condição sociodemográfica das famílias; b) Medida de Manejo Familiar. Na análise estatística, utilizou-se o Coeficiente de Spearman e o Teste de Mann Whitney.

Resultados:

quanto maior o tempo de atendimento especializado, menor o escore de identidade (rs= - 0,209, p=0,01); maior o escore de esforço (rs=0,181, p = 0,03), de dificuldade familiar (rs=0,239, p = <0,001) e do impacto da doença na vida familiar (rs=0,213, p=0,01). As famílias de crianças e adolescentes com dependência física para as atividades de vida diária apresentaram maior escore nas seguintes dimensões: esforço de manejo (<0,001), dificuldade familiar (p=0,004) e visão do impacto da doença (p=<0,001).

Conclusão:

evidenciou-se correlação entre o manejo com os aspectos sociodemográficos e de dependência física infantojuvenil, com associação entre a dificuldade de manejo e maior tempo de atendimento infantojuvenil.

Descritores:
Enfermagem Familiar; Pessoas com Deficiência; Criança; Adolescente; Neurologia; Família

RESUMEN

Objetivo:

investigar la relación del manejo familiar con aspectos sociodemográficos y de dependencia física de niños y adolescentes con agravio neurológico.

Método:

estudio descriptivo, transversal, realizado en un centro de neurología infantil. Se Obtuvo la muestra no probabilística de 141 familiares que respondieron a dos instrumentos: a) Condición sociodemográfica de las familias; b) Medida de Manejo Familiar. En el análisis estadístico, se utilizó el Coeficiente de Spearman y el Test de Mann Whitney.

Resultados:

cuanto mayor el tiempo de atendimiento especializado, menor el puntaje de identidad (rs= - 0,209, p=0,01); mayor el puntaje de esfuerzo (rs=0,181, p = 0,03), de dificultad familiar (rs=0,239, p = <0,001) y del impacto de la enfermedad en la vida familiar (rs=0,213, p=0,01). Las familias de niños y adolescentes con dependencia física para las actividades de vida diaria presentaron mayor puntaje en las siguientes dimensiones: esfuerzo de manejo (<0,001), dificultad familiar (p=0,004) y visión del impacto de la enfermedad (p=<0,001).

Conclusión:

se evidenció una correlación entre el manejo con los aspectos sociodemográficos y de dependencia física infantojuvenil, con asociación entre la dificultad de manejo y mayor tiempo de atendimiento infantojuvenil.

Descriptores:
Enfermería de la Familia; Personas com Discapacidad; Niño; Adolescente; Neurología; Familia

Introduction

Neurological disease in children and adolescents is a worldwide reality11 Berry JG, Poduri A, Bonkowsky JL, Zhou J, Graham DA, Welch C, et al. Trends in Resource Utilization by Children with Neurological Impairment in the United States Inpatient Health Care System: A Repeat Cross-Sectional Study. PLoS Med. [Internet]. 2012 [cited Apr 06, 2017];9(1):e1001158. Available from: http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001158.
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2 Global Burden of Disease 2013 Collaboration. Global and National Burden of Diseases and Injuries Among Children and Adolescents Between 1990 and 2013: Findings From the Global Burden of Disease 2013 Study. JAMA Pediatr. [Internet]. 2016 [cited Apr 7, 2018];170(3):267-87. Available from: https://jamanetwork.com/journals/jamapediatrics/fullarticle/2481809
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-33 Global Burden of Disease Child and Adolescent Health Collaboration. Child and Adolescent Health From 1990 to 2015: Findings From the Global Burden of Diseases, Injuries, and Risk Factors 2015 Study. JAMA Pediatr. [Internet]. 2017 [cited Apr 7, 2017];171(6):573-92. Available from: https://jamanetwork.com/journals/jamapediatrics/fullarticle/2613463
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. 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 disease44 Moreau JF, Fink EL, Hartman ME, Angus DC, Bell MJ, Linde-Zwirble WT, et al. Hospitalizations of children with neurological disorders in the United States. Pediatr Crit Care Med. [Internet]. 2014 [cited Jul 28, 2017];14(8):801-10. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3795828/pdf/nihms-451737.pdf
https://www.ncbi.nlm.nih.gov/pmc/article...
. 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 system55 Rodrigues LS, Lima RHS, Costa LC, Batista RFL. Characteristics of children born with congenital malformations in São Luís, Maranhão, Brazil, 2002-2011. Epidemiol Serv Saúde. [Internet]. 2014 [cited Sep 12, 2017];23(2):295-304. Available from: http://scielo.iec.pa.gov.br/pdf/ess/v23n2/v23n2a11.pdf
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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 living66 Instituto Brasileiro de Geografia e Estatística. Pesquisa Nacional de saúde 2013: Ciclos de vida. [Internet]. Rio de Janeiro: IBGE; 2015. 92 p. [Acesso 3 ago 2017]. Disponível em: http://biblioteca.ibge.gov.br/visualizacao/livros/liv94522.pdf
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. 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 population77 Guillamón N, Nieto R, Pousada M, Redolar D, Muñoz E, Hernández E, et al. Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies. J Clin Nurs. [Internet]. 2013 [cited Sep 11, 2017];22(11-12):1579-90. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/jocn.12124/full
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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 disease88 Knafl KA, Deatrick JA. Family Management Style: Concept Analysis and Development. J Pediatr Nurs. [Internet]. 1990 [cited Ago 10, 2017];5(1):4-14. Available from: http://www.pediatricnursing.org/article/0882-5963(90)90047-D/pdf
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). 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 members99 Knafl KA, Deatrick JA. Further Refinement of the Family Management Style Framework. J Fam Nurs. [Internet]. 2003 [cited Oct 30, 2017];9(3):232-56. Available from: http://journals.sagepub.com/doi/abs/10.1177/1074840703255435?journalCode=jfna
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In 2011, an instrument originated from the FMSF, the Family Management Measure (FaMM) was published1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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. 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 diabetes1111 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of Children Newly Diagnosed With Type 1 Diabetes: Experiences With Social Support and Family Management. Diabetes Educ. [Internet]. 2011 [cited Sep 12, 2017];37(4):508-18. Available from: http://journals.sagepub.com/doi/pdf/10.1177/0145721711412979
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-1212 Sullivan-Bolyai S, Knafl K, Deatrick J, Grey M. Maternal Management Behaviors for Young Child With Type 1 Diabetes. MCN Am J Matern Child Nurs. [Internet] 2003 [cited Oct 30, 2017];28(3):160-6. Available from: https://insights.ovid.com/pubmed?pmid=12771694
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and cancer1313 Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. Eur J Oncol Nurs. [Internet]. 2015 [cited Jul 18, 2017];19(2):107-12. Available from: http://www.ejoncologynursing.com/article/S1462-3889(14)00173-2/fulltext
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, 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 disease1414 Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. [Internet]. 2013 [cited Ago 22, 2017];28(6):523-35. Available from: http://www.pediatricnursing.org/article/S0882-5963(13)00110-3/fulltext
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regarding the need to change the parents’ employment for the organization of child care1515 Zhang Y, Wei M, Zhang Y, Shen N. Chinese family management of chronic childhood conditions: A cluster analysis. J Spec Pediatr Nurs. [Internet]. 2014 [cited Jul 18, 2017];19(1):39-53. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/jspn.12046/full
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. 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 problematic1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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. Besides being a useful instrument for clinical practice, it also applicable in researches1616 Deatrick JA, Mullaney EK, Mooney-Doyle K. Exploring Family Management of Childhood Brain Tumor Survivors. J Pediatr Oncol Nurs. [Internet]. 2009 [cited Sep 14, 2017];5(26):303-11. Available from: http://journals.sagepub.com/doi/pdf/10.1177/1043454209343210
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, since the application of the FaMM allows knowing important aspects to be considered in the nursing professional practice1717 Hutton A, Munt R, Aylmer C, Deatrick JA. Using the Family Management Measure in Australia. Neonat Paediatr Child Health Nurs. [Internet]. 2012 [cited Jul 15, 2017];15(2):17-25. Available from: https://www.researchgate.net/publication/241278414_Using_the_Family_Management_Measure_in_Australia
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.

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 tool1818 Ichikawa CRF, 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. [Internet]. 2014 [cited Jun 30, 2017];22(1):115-22. Available from: http://www.scielo.br/pdf/rlae/v22n1/0104-1169-rlae-22-01-00115.pdf
http://www.scielo.br/pdf/rlae/v22n1/0104...
-1919 Bousso RS, Ichikawa CRF, Misko MD, Santos MR, Baliza MF, Mendes-Castilho AMC, et al. Validation of the Family Management Measure for the Brazilian culture. Rev Bras Enferm. [Internet]. 2017[cited Oct 30, 2017];70(6):1151-8. Available from: http://www.scielo.br/pdf/reben/v70n6/0034-7167-reben-70-06-1151.pdf
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. 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 diseases2020 Dantas MSA, Collet N, Moura FM, Torquato IMB. Impact of a cerebral palsy diagnosis on the family. Texto Contexto Enferm. [Internet]. 2010 [cited Apr 06, 2018]; 19(2):229-37. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S010407072010000200003&lng=en&nrm=iso&tlng=pt
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-2121 Nóbrega VM, Collet N, Silva KL, Coutinho SED. Network and social support of families of children with chronic conditions. Rev Eletr Enferm. [Internet]. 2010 [cited Apr 6, 2018];12(3):431-40. Available from: https://www.fen.ufg.br/revista/v12/n3/v12n3a03.htm
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. 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.

From this perspective, the following research question was defined: Is the family management of children and adolescents with neurological impairment related to the sociodemographic and physical aspects of children and adolescents? And the following objective was drawn for this research: To investigate the relationship of family management with sociodemographic and physical dependence aspects of children and adolescents with neurological disorders.

Method

This is a descriptive, cross-sectional study with a quantitative approach, delimited by the participation of 141 family members of children and adolescents with neurological diseases, attended at a Child Neurology Center of the Unified Health System, located in a state of southern region of Brazil. This Center is a reference at the state and provides care in several subspecialties: Autism Spectrum Disorder (ASD), Encephalopathy, Epilepsy, Recent Epilepsy, Cerebral Palsy (CP), Premature and Risk Newborn, Febrile Seizure, General Neuropediatrics, Headache and Child and Adolescent Psychiatry. To select the family members of children and adolescents, in view of the various subspecialties, we considered those with the greatest potential to respond to the objectives and inclusion criteria of this study. Thus, the following subspecialties were included: ASD, epilepsy and CP.

For the sample definition, even though this is a study with a non-probabilistic sample, we counted on the support of professionals from the Laboratory of Applied Statistics of the Federal University of Paraná. In order to do this, the months with the highest number of visits were investigated among the selected clinics in the year 2014, which preceded the planning of this study, and these values supported the definition of sample size. Thus, it was established 35 family members for ASD; 39 for epilepsy; and 67 for CP, totaling 141 relatives.

Inclusion criteria were family members of children and adolescents diagnosed or under treatment for at least six months and without hospitalizations or emergency room visits in the last two months. People who provided care and lived in the same house with the child/adolescent were considered ‘family members’, justified by daily contact and experience in care, which would allow us to identify how families incorporate the management of the child and adolescent disease in their daily routines1414 Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. [Internet]. 2013 [cited Ago 22, 2017];28(6):523-35. Available from: http://www.pediatricnursing.org/article/S0882-5963(13)00110-3/fulltext
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. The development of actions in hygiene, food, mobility, locomotion, elimination, health care, therapeutics, socialization and/or protection was conceived as ‘providing care’.

The criterion of the time of diagnosis, receiving care, hospital discharge or emergency room care is justified by the search for situations that are not severe1414 Knafl KA, Deatrick JA, Knafl GJ, Gallo AM, Grey M, Dixon J. Patterns of family management of childhood chronic conditions and their relationship to child and family functioning. J Pediatr Nurs. [Internet]. 2013 [cited Ago 22, 2017];28(6):523-35. Available from: http://www.pediatricnursing.org/article/S0882-5963(13)00110-3/fulltext
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Families whose children were under the age of two and whose adolescents were above the age of 19 were excluded. This minimum age is justified for the search of situations for which the family member already had the perception of changes in growth and development of the child, while the maximum age was cut based on the definition of adolescent by the World Health Organization2222 World Health Organization. Young People´s Health - a Challenge for Society. Technical Report Series 731 [Internet]. Geneva: 1986. 120 p. [cited Jul 5, 2017] Avaliable from: http://apps.who.int/iris/bitstream/10665/41720/1/WHO_TRS_731.pdf
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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 with six family members and the second, with five family members. It had the following variables: a) sociodemographic characterization of family members: age (years), gender and kinship to the child/adolescent; b) sociodemographic characterization of the child/adolescent: age (years) and sex; c) sociodemographic aspects of health care and social assistance: time (years) of care of the child/adolescent in the specialty of neurology, access to medications, coming from the public health system, access to the Continuous Care Grant (CCG), and access to the public transport fare exemption; e) physical dependence of the child/adolescent in the following activities of daily living (ADL): food, grooming, hygiene, bladder and bowel elimination, locomotion and mobility. In the evaluation of physical dependence in the ADL, we considered those related to the physical condition associated with the disease, and not to the phase of the child/adolescent’s development.

The second instrument used refers to the adapted and validated version of the Family Management Measure1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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, named in Brazil as “Medida de Manejo Familiar1818 Ichikawa CRF, 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. [Internet]. 2014 [cited Jun 30, 2017];22(1):115-22. Available from: http://www.scielo.br/pdf/rlae/v22n1/0104-1169-rlae-22-01-00115.pdf
http://www.scielo.br/pdf/rlae/v22n1/0104...
-1919 Bousso RS, Ichikawa CRF, Misko MD, Santos MR, Baliza MF, Mendes-Castilho AMC, et al. Validation of the Family Management Measure for the Brazilian culture. Rev Bras Enferm. [Internet]. 2017[cited Oct 30, 2017];70(6):1151-8. Available from: http://www.scielo.br/pdf/reben/v70n6/0034-7167-reben-70-06-1151.pdf
http://www.scielo.br/pdf/reben/v70n6/003...
, 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’1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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. 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 dimension2323 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. [Homepage on the Internet] Family Management Measure. Carolina Nursing. Scholl of Nursing. The University of North Carolina at Chapel Hill. [cited Mar 03, 2017] 2011. Available from: http://nursing.unc.edu/research/office-of-research-support-consultation/resources/family-management-measure-famm/
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.

The instrument is composed of 53 items in six dimensions: a) Child’s identity (five items) measures the perception of the parents about the child/adolescent and their daily life. Higher scores indicate a more normal life for the child/adolescent despite the chronic illness (minimum-maximum score: 5-25); b) Management ability (12 items) addresses the parents’ perception of their competence to take care of the child/adolescent’s illness. Higher scores mean that parents consider themselves more capable of managing the disease (minimum-maximum score: 12-60); c) Management effort (four items) addresses the work necessary to manage the condition. Higher scores indicate greater effort (minimum-maximum score: 4-20); d) Family difficulty in management (14 items) addresses the parents’ perception of the extent to which having a child/adolescent with a chronic illness makes life difficult. Higher scores indicate greater difficulty (minimum-maximum score: 14-70); e) Perception of disease impact (10 items) measures the perception of parents about the severity of the illness and its implications for the child/adolescent and the family. Higher scores indicate greater perceived severity and impact (minimum-maximum score: 10-50); f) Mutuality between parents (eight items) addresses the satisfaction of how partners/spouses work together to manage the child/adolescent’s disease. Higher scores indicate greater satisfaction (minimum-maximum score: 8-40)1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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The dimension f) is applicable exclusively to family members with partner/spouse.

In dimensions a), b) and f), higher scores indicate that the family has a more normal and easier life in managing the circumstances of the disease. And in dimensions c), d) and e), higher scores show that family life is focused on the work of managing the chronic illness of the child/adolescent and the difficulties associated with therapeutics1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
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.

The data obtained from the questionnaires were organized in spreadsheets elaborated in Microsoft® Excel 2007 and double-checked. In situations where there were inconsistencies, the original questionnaire was taken up for the correction of the database.

The sociodemographic information on aspects of health care, social assistance and physical dependence were summarized by calculating absolute (n) and relative (%) frequencies; and, in the continuous variables, the mean, standard deviation (SD) and minimum and maximum values were estimated. The scores of the Family Management dimensions were calculated according to the guidelines established by the researchers who developed the instrument2323 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. [Homepage on the Internet] Family Management Measure. Carolina Nursing. Scholl of Nursing. The University of North Carolina at Chapel Hill. [cited Mar 03, 2017] 2011. 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 presented in mean score, SD, minimum and maximum values.

To evaluate the correlation between the variables, non-parametric statistical techniques were used. The use of these techniques is justified by the lack of the normality assumption. To verify the relationship between two continuous variables (dimensions of family management versus time of specialized care in neuropediatrics), we used Spearman’s Coefficient; between a continuous and a dichotomous variable (dimensions of family management versus access to CCG, public transportation fare exemption, medications, physical dependence in activities of daily living - ADL), we used the Mann Whitney test.

Statistica Software version 7.0 was used in the data analysis. The results with p-value equal to or below 0.05 were considered significant (p≤0.05).

This research was approved by the Research Ethics Committee of the main institution under Opinion n. 1,299,529 and also of the co-participating institution under Opinion 1,238,692. Ethical precepts of research involving human beings were respected. 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.

Results

Table 1 presents the sociodemographic characterization of family members and children/adolescents, aspects of health care, social assistance and physical dependence in ADL by children and adolescents with neurological disorders. The prevalent age range of family members was 31 to 40 years old, representing 48.94% (n = 69) of the interviewees. Female were 85.82% (n = 121) of the family members, and 83% (n = 117) were mothers.

Table 1
Sociodemographic characterization of families of children and adolescents with neurological disorders and physical dependence of children and adolescents (n = 141). Curitiba, PR, Brazil, 2016

On the children and adolescents’ age range, 60% (n = 84) had two to 10 years and the male sex was predominant (67%; n = 94). The minimum time that the children and adolescents had been received care in neuropediatrics was six months and the maximum time was 17 years, with a mean of 6.9 years and a standard deviation of 4.3 years. In a greater proportionality, 29.1% (n = 41) of the children and adolescents had been receiving this kind of service for five and nine years. It was found that 49.6% (n = 70) of the children and adolescents received CCG and 44% (n = 62) had access to at least one medicine from the public health system.

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) were answered by the 141 family members, except for the dimension mutuality between parents, answered by 113 participants. Considering the minimum and maximum score in each dimension of this study, the management ability and mutuality between parents presented a mean score of 45.45 and 34.61, respectively, and were considered high. In the dimension family difficulty in management, there were differences between the responses of the families, indicated by the standard deviation of 12.84.

Table 2
Dimensions of family management of children and adolescents with neurological diseases (n=141). Curitiba, PR, Brazil, 2016

As shown in Table 3, when correlating the time of neuropediatric care of children and adolescents with the family management, there was statistical significance with the dimensions of the child’s identity, management effort, family difficulty and perception of disease impact. According to the family members’ view, the longer the time of specialized care, the lower the identity score; the greater the management effort, the family difficulty; and even more impacting is the disease in family life.

Table 3
Correlation of the family management with the time of care of children and adolescents in neuropediatrics (n=141). Curitiba, PR, Brazil, 2016

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 ADLs (feeding, hygiene, grooming, bladder and bowel eliminations, mobility and locomotion), there was a significant relationship with the dimensions child’s identity, management effort, family difficulty and perception of the disease impact. The families of the dependent children/adolescents in the ADL presented a higher mean score of management effort, family difficulty and perception of the disease impact. The families of independent individuals in the ADL presented a higher mean score in the dimension of child’s identity and management ability.

Table 4
Relationship of family management with physical dependence of children and adolescents in activities of daily living (n = 141). Curitiba, PR, Brazil, 2016

Table 5 shows the correlation between the dimensions of family management with the access or non-access to governmental, social and welfare subsidies by children and adolescents with neurological diseases. There was a significant statistical correlation between CCG and the dimensions of management ability, management effort, family difficulty and perception of the disease impact. In this sense, the families that did not receive the CCG presented higher mean score of management ability. On the other hand, those who received it showed higher mean scores of management effort, family difficulty and perception of the disease impact.

Tabela 5
Relação do manejo familiar com o acesso aos subsídios governamentais sociais e assistenciais por crianças e adolescentes com doenças neurológicas (n=141). Curitiba, PR, Brasil, 2016

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.

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 basis2424 Hoefman R, Payakachat N, Van Exel J, Kuhlthau K, Kovacs E, Pyne J. et al. Caring for a Child with Autism Spectrum Disorder and Parents’ Quality of Life: Application of the CarerQol. J Autism Dev Disord. [Internet]. 2014 [cited Apr 6, 2018];44(8):1933-45. Available from: https://link.springer.com/article/10.1007/s10803-014-2066-1
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-2525 Jeglinsky I, Autti-Rämö I, Brogren Carlberg E. Two sides of the mirror: parents’ and service providers’ view on family centredness os care for children with cerebral palsy. Child Care Health Dev. [Internet]. 2012 [cited Apr 7, 2018];38(1):79-86. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2214.2011.01305.x
https://onlinelibrary.wiley.com/doi/full...
. In this research, we investigated the relationship of family management with sociodemographic aspects of health care, social assistance and physical dependence among children and adolescents.

The sociodemographic conditions of health care, social assistance of the families and the situation of physical dependence/independence of children and adolescents in ADL were significantly associated with all dimensions of family management, except in the dimension of mutuality between parents.

In this study, the child’s identity score was negatively correlated with the highest time of scare in a specialized neurology service, indicating a change in the perception of the family in relation to the child/adolescent and to the daily life of the family. During child and adolescent development, as the years pass, families start to perceive the intensity of the development deficit2626 Meireles NFP, Duarte PHM, Mélo TM, Pereira HCB, Pinheiro YT, Silva RMC. et al. Familial and clinical sociodemographic profile of children with neurological dysfunction treated in the early intervention program. Arch Health Invest. [Internet]. 2017 [cited Jun 30, 2017];6(10):492-9. Available from: http://www.archhealthinvestigation.com.br/ArcHI/article/view/2256
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. So, the family’s expectation that individuals perform activities in an autonomous way may not be met, since this public will always need the help of their relatives to carry them out due to their limitations related to the disease2727 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 Jul 24, 2017];56(9):853-61. Available from: http://onlinelibrary.wiley.com/doi/10.1111/dmcn.12472/full
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.

The child’s identity was positively correlated with the physical independence of children/adolescents in ADL and lack of support for receiving medication from the public health system. Many children/adolescents use monotherapy, others polytherapy, situations that are linked to the most severe clinical condition2828 Lagunju IA, Imam ZO, Adedokun BO. Cost of epilepsy in children attending a tertiary centre in Nigeria. Int Health. [Internet]. 2011 [cited Jul 26, 2017];3(3):213-8. Available from: https://academic.oup.com/inthealth/article-abstract/3/3/213/648862/Cost-of-epilepsy-in-children-attending-atertiary?redirectedFrom=fulltext
https://academic.oup.com/inthealth/artic...
. Those who do not use medications may have minor impairments, 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 care1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
https://academic.oup.com/jpepsy/article-...
. The aforementioned benefits are linked to the low-income population2929 Lei 12.470, de 31 de Agosto de 2011 [BR]. [Internet]. Diário Oficial da União. Brasil. 2011 Ago. 31 [Acesso 10 ago 2017]. Disponível em: http://www.planalto.gov.br/ccivil_03/_ato2011-2014/2011/lei/l12470.htm
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-3030 Paraná. Lei 18,419 de 7 de Janeiro de 2015 [Internet]. Brasil; 2015[cited Ago 10, 2017]. Available from: http://www.legislacao.pr.gov.br/legislacao/pesquisarAto.do?action=exibir&codAto=139152&codItemAto=845717
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; 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 scope3131 Jaglal SB, Guilcher SJT, Bereket T, Kwan M, Munce S, Conklin J, et al. Development of a Chronic Care Model for Neurological Conditions (CCM-NC). BMC Health Serv Res. [Internet]. 2014 [cited Ago 19, 2017];14(1):409. Available from: http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-409
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. 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 income3030 Paraná. Lei 18,419 de 7 de Janeiro de 2015 [Internet]. Brasil; 2015[cited Ago 10, 2017]. Available from: http://www.legislacao.pr.gov.br/legislacao/pesquisarAto.do?action=exibir&codAto=139152&codItemAto=845717
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; 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 income3232 Marx C, Rodrigues EM, Rodrigues MM, Vilanova LCP. Depression, anxiety and daytime sleepiness of primary caregivers of children with cerebral palsy. Rev Paul Pediatr. [Internet]. 2011 [cited Ago 11, 2017];29(4):483-88. Available from: http://www.scielo.br/pdf/rpp/v29n4/en_03.pdf
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, 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 ability3333 Arnould C, Bleyenheuft Y, Thonnard J. Hand functioning in children with cerebral palsy. Front Neurol. [Internet]. 2014 [cited Ago 20, 2017];5:1-10. Available from: https://www.frontiersin.org/articles/10.3389/fneur.2014.00048/full
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.

The family difficulty score indicates parents’ perception of how having a child with illness makes life more difficult1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
https://academic.oup.com/jpepsy/article-...
. 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 friends3434 Ferreira MC, Loureiro B, Naccio D, Yumi M, Otsuka C, Barbosa ADM, et al. Assessing the burden on primary caregivers of children with cerebral palsy and its relation to quality of life and socioeconomic aspects. Acta Fisiatr. [Internet]. 2015 [cited Jun 29, 2017];22(1):9-13. Available from: https://www.revistas.usp.br/actafisiatrica/article/viewFile/103894/102391
https://www.revistas.usp.br/actafisiatri...
. 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 procedures3535 Joosten AV, Safe AP. Management strategies of mothers of school-age children with autism: Implications for practice. Aust Occup Ther J. [Internet]. 2014 [cited Ago 12, 2017];61(4):249-58. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/1440-1630.12116/full
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) and unavailability of public services3636 Andrade MB, Vieira SS, Dupas G. Cerebral palsy: a study on family coping. REME. [Internet]. 2011 [cited Ago 18, 2017];15(1):86-96. Available from: http://www.reme.org.br/artigo/detalhes/12
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.

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 technologies3737 Almasri N, Palisano RJ, Dunst C, Chiarello LA, O’Neil ME, Polansky M. Profiles of family needs of children and youth with cerebral palsy. Child Care Health Dev. [Internet]. 2012 [cited Ago 18, 2017];38(6):798-806. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2214.2011.01331.x/full
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, 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 CCG3838 Tôrres AKV, Sarinho SW, Feliciano KVO, Kovacs MH. Organization acess to motor rehabilitation for children with cerebral paralysis in the city of Recife. Rev Bras Saúde Matern Infant. [Internet]. 2011 [cited Jul 21, 2017];11(4):427-36. Available from: http://www.scielo.br/pdf/rbsmi/v11n4/v11n4a09.pdf
http://www.scielo.br/pdf/rbsmi/v11n4/v11...
.

The family effort score refers to the perception of the work they develop to manage the disease1010 Knafl K, Deatrick JA, Gallo A, Dixon J, Grey M, Knafl G, et al. Assessment of the psychometric properties of the family management measure. J Pediatr Psychol. [Internet]. 2011 [cited Sep 12, 2017];36(5):494-505. Available from: https://academic.oup.com/jpepsy/article-lookup/doi/10.1093/jpepsy/jsp034
https://academic.oup.com/jpepsy/article-...
. 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 management3939 Zhang Y, Wei M, Han H-R, Zhang Y, Shen N. Testing the Applicability of th Family Management Style Framework to Chinese Families. West J Nurs Res [internet]. 2013 [cited Abril 08, 2018]; 35(7): 920-42. Available from: http://journals.sagepub.com/doi/abs/10.1177/0193945913482051
http://journals.sagepub.com/doi/abs/10.1...
. 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 therapy4040 Mesterman R, Leitner Y, Yifat R, Gilutz G, Levi-Hakeini O, Bitchonsky O, et al. Cerebral palsy-long-term medical, functional, educational, and psychosocial outcomes. J Child Neurol. [Internet]. 2010 [cited Jul 24, 2017];25(1):36-42. Available from: http://journals.sagepub.com/doi/pdf/10.1177/0883073809336677
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. Thus, the family routine encompasses the mobility for services of physiotherapy, equine therapy, hydrotherapy, occupational therapy, speech therapy, among others3232 Marx C, Rodrigues EM, Rodrigues MM, Vilanova LCP. Depression, anxiety and daytime sleepiness of primary caregivers of children with cerebral palsy. Rev Paul Pediatr. [Internet]. 2011 [cited Ago 11, 2017];29(4):483-88. Available from: http://www.scielo.br/pdf/rpp/v29n4/en_03.pdf
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, 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 person4040 Mesterman R, Leitner Y, Yifat R, Gilutz G, Levi-Hakeini O, Bitchonsky O, et al. Cerebral palsy-long-term medical, functional, educational, and psychosocial outcomes. J Child Neurol. [Internet]. 2010 [cited Jul 24, 2017];25(1):36-42. Available from: http://journals.sagepub.com/doi/pdf/10.1177/0883073809336677
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, so that the greater the physical dependence, the more intense are the activities of care for the family members4141 Marrón EM, Redolar-Ripol D, Boixadós M, Nieto R, Guillamón N, Hernández E, et al. Burden on Caregivers of Children with Cerebral Palsy: Predictors and Related Factors. Univ Psychol. [Internet]. 2013 [cited Jun 29, 2017];12(3):767-77. Available from: http://revistas.javeriana.edu.co/index.php/revPsycho/article/viewFile/1928/5800
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.

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 them4242 Rodby-Bousquet E, Paleg G, Casey J, Wizert A, Livingstone R. Physical risk factors influencing wheeled mobility in children with cerebral palsy: a cross-sectional study. BMC Pediatr. [Internet]. 2016 [cited Ago 13, 2017];16(165):1-8. Available from: https://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-016-0707-6
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. 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 child4343 Al-Gamal E. Quality of life and anticipatory grieving among parents living with a child with cerebral palsy. Int J Nurs Pract. [Internet]. 2013 [cited Ago 30, 2017];19(3):288-94. Available from: http://onlinelibrary.wiley.com/doi/10.1111/ijn.12075/full
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.

The children and adolescent population with complex medical conditions, such as neurological ones, makes continuous use of medicines4444 Stone BL, Boehme S, Mundorff MB, Maloney CG, Srivastava R. Hospital admission medication reconciliation in medically complex children: an observational study. Arch Dis Child. [Internet]. 2009 [cited Ago 30, 2017];95:250-5. Available from: http://adc.bmj.com/content/95/4/250.full
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, which requires attention from the family to administer them, as well as to obtaining them. The exhausting routine causes many family members to stop working because it is not possible to combine an occupational activity and the care of the child4545 Almeida T, Ruedell A, Nobre J, Tavares K. Cerebral Palsy: Impact on the Family Daily-Life. RBCS. [Internet]. 2015 [cited Set 1, 2017];19(3):171-78. Available from: http://periodicos.ufpb.br/ojs/index.php/rbcs/article/view/20488/15066
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.

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 income4646 Zanon MA, Batista NA. Quality of life and level of anxiety and depression in caregivers of children with cerebral palsy. Rev Paul Pediatr. [Internet]. 2012 [cited Set 1, 2017];30(3):392-96. Available from: http://www.scielo.br/pdf/rpp/v30n3/en_13.pdf
http://www.scielo.br/pdf/rpp/v30n3/en_13...
. The economic condition of the families is related to the maintenance of the children and adolescents’ therapy3737 Almasri N, Palisano RJ, Dunst C, Chiarello LA, O’Neil ME, Polansky M. Profiles of family needs of children and youth with cerebral palsy. Child Care Health Dev. [Internet]. 2012 [cited Ago 18, 2017];38(6):798-806. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2214.2011.01331.x/full
http://onlinelibrary.wiley.com/doi/10.11...
.

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 absence2828 Lagunju IA, Imam ZO, Adedokun BO. Cost of epilepsy in children attending a tertiary centre in Nigeria. Int Health. [Internet]. 2011 [cited Jul 26, 2017];3(3):213-8. Available from: https://academic.oup.com/inthealth/article-abstract/3/3/213/648862/Cost-of-epilepsy-in-children-attending-atertiary?redirectedFrom=fulltext
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, on aspects related to professional life, in which the performance of these children and adolescents is related to the evolution of the disease4747 Nápoles GM, Concepción AD, Pérez IG, Sánchez LGR. The child with epilepsy and his family. Psychosocial aspects to consider. Gac. Méd Espirit. [Internet]. 2008 [cited Set 2, 2017];10(March 2007). Available from: http://revgmespirituana.sld.cu/index.php/gme/article/view/607/436
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. 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 job4848 Berniér-François V, Charbonnier C, Pedelucq P, Tsimba V. Social and professional integration of young adults with cerebral palsy. Importance of predictive factors during childhood in adjusting their life plan. Motr Cereb Réadapt Neurol. [Internet]. 2010 [cited Set 2, 2017];31(3):119-28. Available from: http://www.em-consulte.com/en/article/264150/iconosup
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. The implications of transition to independent adult life involve the housing condition4949 Donkervoort M, Wiegerink DJHG, Van Meeteren J, Stam HJ, Roebroeck MJ. Transition to adulthood: validation of the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence. Dev Med Child Neurol. [Internet]. 2009 [cited Set 2, 2017];51(1):53-62. Available from: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03115.x/epdf
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and married life, which, because of illness, may lead parents to think that children will be rejected and unable to maintain a marriage relationship5050 Ballan MS. Parental Perspectives of Communication about Sexuality in Families of Children with Autism Spectrum Disorders. J Autism Dev Disord. [Internet]. 2012 [cited Ago 4, 2017];42(5):676-84. Available from: https://link.springer.com/article/10.1007%2Fs10803-011-1293-y
https://link.springer.com/article/10.100...
.

In addition, there is concern about money management for the maintenance of treatment of children and adolescents with neurological diseases5151 Beacham BL, Deatrick JA. Children with chronic conditions: perspectives on condition management. J Pediatr Nurs [internet]. 2015 [cited Abril 8, 2018]; 30(1):25-35. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4291290/
https://www.ncbi.nlm.nih.gov/pmc/article...
. 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 management1515 Zhang Y, Wei M, Zhang Y, Shen N. Chinese family management of chronic childhood conditions: A cluster analysis. J Spec Pediatr Nurs. [Internet]. 2014 [cited Jul 18, 2017];19(1):39-53. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/jspn.12046/full
http://onlinelibrary.wiley.com/wol1/doi/...
,3939 Zhang Y, Wei M, Han H-R, Zhang Y, Shen N. Testing the Applicability of th Family Management Style Framework to Chinese Families. West J Nurs Res [internet]. 2013 [cited Abril 08, 2018]; 35(7): 920-42. Available from: http://journals.sagepub.com/doi/abs/10.1177/0193945913482051
http://journals.sagepub.com/doi/abs/10.1...
,5252 Sheng N, Ma J, Ding W, Zhang Y. Cluster analysis for family management of Chinese children with chronic kidney diseases. J Health Psychol. [internet]. 2017 [cited Abril 8, 2018]; 28:1-11. Available from: https://www.ncbi.nlm.nih.gov/pubmed/28956462
https://www.ncbi.nlm.nih.gov/pubmed/2895...
.

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 cancer1313 Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. Eur J Oncol Nurs. [Internet]. 2015 [cited Jul 18, 2017];19(2):107-12. Available from: http://www.ejoncologynursing.com/article/S1462-3889(14)00173-2/fulltext
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and another focusing on diabetes mellitus1111 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of Children Newly Diagnosed With Type 1 Diabetes: Experiences With Social Support and Family Management. Diabetes Educ. [Internet]. 2011 [cited Sep 12, 2017];37(4):508-18. Available from: http://journals.sagepub.com/doi/pdf/10.1177/0145721711412979
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, 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, respectively1111 Rearick EM, Sullivan-Bolyai S, Bova C, Knafl KA. Parents of Children Newly Diagnosed With Type 1 Diabetes: Experiences With Social Support and Family Management. Diabetes Educ. [Internet]. 2011 [cited Sep 12, 2017];37(4):508-18. Available from: http://journals.sagepub.com/doi/pdf/10.1177/0145721711412979
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, and family difficulty in the study of children surviving cancer had a mean score of 34.601313 Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. Eur J Oncol Nurs. [Internet]. 2015 [cited Jul 18, 2017];19(2):107-12. Available from: http://www.ejoncologynursing.com/article/S1462-3889(14)00173-2/fulltext
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, which were similar to those of this study. The management effort score of children/adolescents surviving cancer was 10.011313 Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. Eur J Oncol Nurs. [Internet]. 2015 [cited Jul 18, 2017];19(2):107-12. Available from: http://www.ejoncologynursing.com/article/S1462-3889(14)00173-2/fulltext
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, 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 dimensions1313 Kim DH, Im YJ. The influence of family management style on psychosocial problems of childhood cancer survivors in Korea. Eur J Oncol Nurs. [Internet]. 2015 [cited Jul 18, 2017];19(2):107-12. Available from: http://www.ejoncologynursing.com/article/S1462-3889(14)00173-2/fulltext
http://www.ejoncologynursing.com/article...
,1515 Zhang Y, Wei M, Zhang Y, Shen N. Chinese family management of chronic childhood conditions: A cluster analysis. J Spec Pediatr Nurs. [Internet]. 2014 [cited Jul 18, 2017];19(1):39-53. Available from: http://onlinelibrary.wiley.com/wol1/doi/10.1111/jspn.12046/full
http://onlinelibrary.wiley.com/wol1/doi/...
. 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 facilitated and made difficult the family management, which affect the adaptation of the families to the demands of care of the child and the adolescent with neurological disease. The recognition of these aspects by professionals makes it possible to use knowledge and skills relevant to this area of knowledge for the improvement of child/adolescent health and to help families to adapt to conditions resulting from child/adolescent disease.

This study had some limitations, such as the cross-sectional nature of data collection that does not allow evaluating cause and effect between variables; the non-probabilistic sample; and despite the attempt to include different family members, the respondents were mainly mothers, so it was not possible to analyze family management from the perspective of other members.

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 the difficulty of management and the longer time of care for children and adolescents. This issue implies the need for families to be cared for beyond the period of impact of the diagnosis and the acute phase. For this purpose, nursing needs to rethink the practice that meets the health needs of this phase, including a continuous care proposal, providing families with support in this change of life and health condition, which occurs over time in the chronic disease. This can lead to a change in their capacity to manage such phenomena.

The use of the FaMM has the potential to provide information on social and care needs of children/adolescents as families begin to manage the disease 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.

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  • *
    Paper extracted from master’s thesis “Manejo familiar da criança e do adolescente com doença neurológica e a sua relação com a estrutura familiar e dependência física: um estudo transversal”, presented to Universidade Federal do Paraná, Curitiba, PR, Brazil. This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - Brasil (CAPES) - Finance Code 001.

Publication Dates

  • Publication in this collection
    2018

History

  • Received
    25 Oct 2017
  • Accepted
    26 Aug 2018
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