Social prejudice in children living with gastrostomy: mothers’ perception
Prejuicio social en niños que viven con gastrostomía: percepción de las madres
Preconceito social em crianças que vivem com gastrostomia: percepção materna
Ana Paula Lopes Pinheiro Ribeiro; Juliana Rezende Montenegro Medeiros de Moraes; Maria Isabel Dias da Costa Malheiro; Tania Vignuda de Souza; Liliane Faria da Silva; Lia Leão Ciuffo
Abstract
Objective: to analyze mothers’ perception of the prejudice faced by children with gastrostomy.
Method: a qualitative descriptive study, developed using the Creative Sensitive Method, carrying out five Body Knowledge dynamics with ten mothers of children in early childhood who have been living with a gastrostomy at home for more than a year. The setting was the outpatient clinic of a federal hospital in the city of Rio de Janeiro, Brazil, a reference in the care of children with special health needs. Lexical analysis was applied with the aid of IRaMuTeQ® software.
Results: the daily struggle of the family of children with gastrostomy in facing prejudice and its limitations corresponds to the class of words that reveals the social prejudice faced by children and their families, due to feeding being carried out in an unconventional way, which has negative repercussions on mothers’ mental health.
Final considerations and implications for practice: mothers encounter resistance from people in accepting feeding through a tube, facing social prejudice together with the children, which can compromise the mental health of both. It is hoped that this study will contribute to maternal strengthening and empowerment in the face of limitations and provide support so that they can live free from social prejudice.
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Palabras clave
Resumo
Objetivo: analisar a percepção materna sobre o preconceito enfrentado por crianças com gastrostomia.
Método: estudo qualitativo e descritivo, desenvolvido através do Método Criativo Sensível, realizando cinco dinâmicas Corpo Saber com dez mães de crianças na primeira infância que vivem com gastrostomia no domicílio há mais de um ano. O cenário foi o ambulatório de um hospital federal na cidade do Rio de Janeiro, Brasil, referência no cuidado de crianças com necessidades de saúde especiais. Aplicou-se a análise lexical com o auxílio do software IRaMuTeQ®.
Resultados: a luta cotidiana da família da criança com gastrostomia no enfrentamento do preconceito e suas limitações corresponde à classe de palavras que revela o preconceito social enfrentado por crianças e suas famílias, devido ao fato de que a alimentação é realizada de um modo não convencional, o que repercute negativamente na saúde mental das mães.
Considerações finais e implicações para a prática: as mães encontram resistência das pessoas na aceitação da alimentação por um tubo, enfrentando, junto com a criança, preconceito social, podendo comprometer a saúde mental de ambos. Espera-se que este estudo contribua para o fortalecimento e o empoderamento materno diante das limitações, e propicie suporte para que possam viver livres de preconceito social.
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Referências
1 Brewer MB. The psychology of prejudice: ingroup love and outgroup hate? J Soc Issues. 1999 dez;55(3):429-44.
2 Hartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies. Soc Sci Med. 2020 fev;246:112749.
3 Ming DY, Jones KA, White MJ, Pritchard JE, Hammill BG, Bush C et al. Healthcare utilization for Medicaid-Insured Children with medical complexity: differences by sociodemographic characteristics. Matern Child Health J. 2022 out;26(12):2407-18.
4 Di Leo G, Pascolo P, Hamadeh K, Trombetta A, Ghirardo S, Schleef J et al. Gastrostomy placement and management in children: a single-center experience. Nutrients. 2019 jul;11(7):1555.
5 Mott Young AH, Parker DM, Ansoanuur FP, Werner I, Banks YS. Talking to children about race and racism. JAMA Pediatr. 2021 mar;175(5):544.
6 Benavidez GA, Zahnd WE, Hung P, Eberth JM. Chronic disease prevalence in the US: sociodemographic and geographic variations by zip code tabulation area. Prev Chronic Dis. 2024 fev;21:230267.
7 Purtell R, Tam RP, Avondet E, Gradick K. We are part of the problem: the role of children’s hospitals in addressing health inequity. Hosp Pract. 2021 mar;49(sup1):445-55.
8 Pardy C, Kharma N, Lau R, Kelly V, Yardley I. Point prevalence of gastrostomy in a paediatric population. J Pediatr Gastroenterol Nutr. 2021 dez;72(4):528-31.
9 Morris JK, Garne E, Loane M, Barisic I, Densem J, Latos-Bieleńska A et al. EUROlinkCAT protocol for a European population- based data linkage study investigating the survival, morbidity and education of children with congenital anomalies. BMJ Open. 2021 jun;11(6):e047859.
10 Sala MCT, Anders JC, Pina JC, Okido ACC, Souza AIJ. Perfil de crianças e adolescentes dependentes de tecnologia em um hospital pediátrico do Sul do país. Esc Anna Nery. 2024;28:e20220409. http://doi.org/10.1590/2177-9465-EAN-2022-0409pt.
11 Nguyen-Truong CKY, Rakha S, Eti DU, Angelesco L. Deconstructing racialized experiences in healthcare: what a missed opportunity for healing looks like and healthcare resources for children and their families. Asian Pac Isl Nurs J. 2021;5(4):227-35.
12 Lage SRM, Lunardelli RSA, Kawakami TT. O capacitismo e suas formas de opressão nas ações do dia a dia. Encontros Bibli. 2023;28:e93040. http://doi.org/10.5007/1518-2924.2023.e93040.
13 Sousa, BVN, Araújo CRS, Oliveira EF, Freitas KKA, Costa PDR, Silva VB. Vulnerabilidade de crianças com necessidades especiais de saúde: implicações para a enfermagem. Saúde Debate. 2022;46(spe5):91-103. http://doi.org/10.1590/0103-11042022E508.
14 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-57.
15 Ribeiro APLP, Moraes JRMM, Queiroz ABA, Góes FGB, Silva LFD, Souza TV. Home care for children with gastrostomy. Rev Bras Enferm. 2022;75(75, Suppl 2):e20200699.
16 Ministério da Saúde (BR). Política nacional de atenção integral à saúde da criança: orientações para implementação. Brasília: Ministério da Saúde; 2018.
17 Precce ML, Moraes JRMM, Pacheco STA, Silva LF, Conceição DS, Rodrigues EC. Educational demands of family members of children with special health care needs in the transition from hospital to home. Rev Bras Enferm. 2020;73(Suppl 4):e20190156.
18 Nascimento LCN, Souza TV, Oliveira ICDS, Moraes JRMM, Aguiar RCB, Silva LFD. Theoretical saturation in qualitative research: an experience report in interview with schoolchildren. Rev Bras Enferm. 2018;71(1):228-33.
19 Camargo BV, Justo AM. Tutorial para o uso do software de análise textual IRAMUTEQ [Internet]. Florianópolis: Universidade Federal de Santa Catarina, Laboratório de Psicologia Social da Comunicação e Cognição; 2013 [citado 2024 nov 6]. Disponível em:
20 Resolução no 466, de 12 de dezembro de 2012 (BR). Diário Oficial da União [periódico na internet], Brasília (DF), 13 jun. 2013 [citado 2024 Nov 6]. Disponível em:
21 Cotton NK, Shim RS. Social determinants of health, structural racism, and the impact on child and adolescent mental health. J Am Acad Child Adolesc Psychiatry. 2022;61(11):1385-89.
22 Kim S, Bang KS, Jeong Y, Lee G, Shin DA, Kim M. The experience of unmarried mothers raising their children in residential facilities: a phenomenological qualitative study. BMC Womens Health. 2022;22(1):274.
23 Crouch E, Srivastav A, McRell AS. Examining racial/ethnic differences in positive childhood experiences among respondents in a southern state. J Child Adolesc Trauma. 2022;15(4):1191-98.
24 Unaka NI, Winn A, Spinks-Franklin A, Poitevien P, Trimm F, Lujano BJN et al. An entrustable professional activity addressing racism and pediatric health inequities. Pediatrics. 2022;149(2):e2021054604.
25 Xiao Y, Mann JJ, Chow JC, Brown TT, Snowden LR, Yip PS et al. Patterns of social determinants of health and child mental health, cognition, and physical health. JAMA Pediatr. 2023;177(12):1294-305.
26 Prakash J, Pardy C, Yardley I, Kelly V. Psychological and social impacts on carers of children with a gastrostomy: a systematic review. Pediatr Surg Int. 2024;40(1):44.
27 Pereira BRS, Cabral KDS, Carvalho VPS, Calado DB, Gonçalves CFG, Sá AKL et al. Conhecimento da qualidade de vida de cuidadores de crianças com deficiência. Braz J Dev. 2020;6(9):71449-60.
28 Priest N, Paradies Y, Trenerry B, Truong M, Karlsen S, Kelly Y. A systematic review of studies examining the relationship between reported racism and health and wellbeing for children and young people. Soc Sci Med. 2013;95:115-27.
29 Campos RB, Alderete G, Silva RMM, Zilly A. Itinerário terapêutico de crianças com necessidades especiais de saúde: revisão integrativa. Rev Eletr Enferm. 2023;26:77290. http://doi.org/10.5216/ree.v25.77290.
30 Bethell C, Blackwell CK, Gombojav N, Davis MB, Bruner C, Garner AS. Toward measurement for a whole child health policy: validity and national and state prevalence of the integrated child risk index. Acad Pediatr. 2022;22(6):952-64.
31 Beech BM, Ford C, Thorpe Jr RJ, Bruce MA, Norris KC. Poverty, racism, and the public health crisis in America. Front Public Health. 2021;9:699049.
32 Validova A, Strane D, Matone M, Wang X, Rosenquist R, Luan X et al. Underinsurance among children with special health care needs in the United States. JAMA Netw Open. 2023;6(12):e2348890.
Aceito em:
11/03/2025
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