Mothers' perception of the neuropsychomotor development of their children liver diseases: a qualitative study
DOI:
https://doi.org/10.17267/2238-2704rpf.v11i4.4121Keywords:
End Stage Liver Disease, Developmental Disabilities, PerceptionAbstract
INTRODUCTION: Much is known about the impact of liver diseases on children's cognitive, motor, and social development. However, knowing what mothers think about their children's development and the aspects they consider most important are issues that have been little explored. OBJECTIVE: To investigate the perceptions of mothers of hepatopathy children about the development of their children. METHOD: This is a qualitative, descriptive-exploratory research conducted with 12 mothers of children (up to 6 years of age) with chronic liver diseases, followed by a reference center in Bahia, Brazil. A narrative interview was conducted to collect the data, later transcribed and processed according to Bardin's analysis of the category thematic content. The perception of mothers about the development of their children was compared with the results obtained in the evaluation with the Denver II screening test (TTDII) of their children. RESULTS: There is an agreement in most evaluation results for suspicion or risk of neuropsychomotor development, demonstrating that these mothers can identify typical and atypical behaviors. The maternal statements are of overprotection and softening of the disease process and self-confidence and superiority as an attitude of defense in an attempt to conceal the feeling of fragility in the face of the disease. CONCLUSIONS: The mothers' perception of their children's development was in line with the TDDII results. Mothers and children need multi-professional follow-up for better therapeutic management and neurodevelopment, as well as family support.
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References
Nóbrega VM, Silva MEA, Fernandes LTB, Viera CS, Reichert APS, Collet N. Chronic disease in childhood and adolescence: continuity of care in the Health Care Network. Rev esc enferm USP. 2017;51:e03226. http://dx.doi.org/10.1590/S1980-220X2016042503226
Castro EK, Piccinini CA. The experience of motherhood in mothers of children with and without chronic disease in the second year of life. Estud Psicol. 2004;9(1):89–99. https://doi.org/10.1590/S1413-294X2004000100011
Anton MC, Augusto C. The emotional development in liver transplanted child. Estud Psicol. 2011;16(1):39–47. https://doi.org/10.1590/S1413-294X2011000100006
Macedo AF, Azevedo RA, Zanin FAA, Duarte D. Oral and systemic findings in children with chronic liver diseases [Internet]. 2007;55(4):403–6. Available from: https://pesquisa.bvsalud.org/portal/resource/pt/lil-510976
Parekh PJ, Balart LA. Ammonia and Its Role in the Pathogenesis of Hepatic Encephalopathy. Clin Liver Dis. 2015;19(3):529–37. https://doi.org/10.1016/j.cld.2015.05.002
Rodijk LH, Den Heijer AE, Hulscher JBF, Verkade HJ, De Kleine RHJ, Bruggink JLM. Neurodevelopmental outcomes in children with liver diseases: A systematic review. J Pediatr Gastroenterol Nutr. 2018;67(2):157–68. https://doi.org/10.1097/MPG.0000000000001981
Bardin L. Análise de Conteúdo. Lisboa: Edições 70; 2007.
Sabatés AL. Denver II: Teste de triagem do desenvolvimento: Manual de treinamento. São Paulo: Hogrefe; 2017.
Fonseca E. Desenvolvimento Normal de 1 a 5 anos. Rev Pediatr SOPERJ [Internet]. 2011;12(suppl 1):4–8. Available from: http://revistadepediatriasoperj.org.br/detalhe_artigo.asp?id=551
Anton MC, Piccinini CA. The impact of pediatric liver transplantation on family relationsvO impacto do transplante hepático infantil na dinâmica familiar. Psicol Reflex Crit. 2010;23(2):187–97. https://doi.org/10.1590/S0102-79722010000200001
Almaas R, Jensen U, Loennecken MC, Tveter AT, Sanengen T, Scholz T, et al. Impaired motor competence in children with transplanted liver. J Pediatr Gastroenterol Nutr. 2015;60(6):723–8. https://doi.org/10.1097/MPG.0000000000000757
De-Paula EM, Porta G, Tannuri ACA, Tannuri U, Befi-Lopes DM. Language assessment of children with severe liver disease in a public service in Brazil. Clinics. 2017;72(6):351–7. https://doi.org/10.6061/clinics/2017(06)04
Hanton LB. Caring for children awaiting heart transplantation: psychosocial implications. Pediatr Nurs. 1998;24(3):214–8. Cited: PMID: 9987419.
Galvão BAP, Bueno KMP, Rezende MB, Magalhães LC. Mother's perception of the performance of children with developmental coordination disorder. Psicol em Estud. 2014;19(3):527–38. https://doi.org/10.1590/1413-73722039315
Ng VL, Sorensen LG, Alonso EM, Fredericks EM, Ye W, Moore J, et al. Neurodevelopmental Outcome of Young Children with Biliary Atresia and Native Liver: Results from the ChiLDReN Study. J Pediatr. 2018;196:139-147.e3. https://doi.org/10.1016/j.jpeds.2017.12.048
Halpern R, Giugliani ERJ, Victora CG, Barros FC, Horta BL. Risk factors for suspicion of developmental delays at 12 months of age Fatores de risco para suspeita de atraso no desenvolvimento neuropsicomotor aos 12 meses de vida. Rev Chil pediatría. 2002;73(5):529-39. http://dx.doi.org/10.4067/S0370-41062002000500016
Squires JE, Ng VL, Hawthorne K, Henn LL, Sorensen LG, Fredericks EM, et al. Neurodevelopmental Outcomes in Preschool and School Aged Children with Biliary Atresia and Their Native Liver. J Pediatr Gastroenterol Nutr. 2020;70(1):79–86. https://doi.org/10.1097/mpg.0000000000002489
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Copyright (c) 2021 Juliana Costa Santos, Nilo Manoel Pereira Vieira Barreto, Hortência Souza Santana, Sumaia Midlej Pimantel Sá, Luciana Rodrigues Silva
This work is licensed under a Creative Commons Attribution 4.0 International License.
This work is licensed under a Creative Commons Attribution 4.0 International License.