The itinerary of families to obtain the diagnosis of the children with special healthcare needs
Abstract
Objective: to know the itinerary taken by the family to obtain the diagnosis of the children with special health needs. Method: a qualitative study was carried out in a pediatric inpatient unit in southern Brazil. Grounded Theory was used as a methodological reference. Sixteen (16) family caregivers participated. Data were collected in 2019 through interviews and submitted to open and axial coding. Results: the families traveled a long route until receiving the children's diagnosis: they detected changes in their general condition; performed several exams; they were suspicious of the diagnosis because other members of the family had already been diagnosed with the same conditions; received information from health professionals about the necessary care and specialized services for the treatment; showed fear, panic and denial; and they valued faith in God in the hope of improving of the children. Final considerations: nurses need to develop an educational process with the family so that they feel prepared and capable of taking care of these children.
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Crisostomo KN, Grossi FRS, Souza RS. The social representations of maternity for mothers of children with disabilities. Rev. Psicol. Saúde. 2019; 11(3):79-96. DOI: http://dx.doi.org/10.20435/pssa.v0i0.608
Xavier DM, Gomes GC, Cesar-Vaz MR. Meanings assigned by families about children’s chronic disease diagnosis. Rev. Bras. Enferm. 2020; 73(2):e20180742. DOI: http://dx.doi.org/10.1590/0034-7167-2018-0742
Nascimento IP, Gomes RM, Vieira SNS, Guedes TP, Santana GJ, Silva FN. Vírus zika e microcefalia: a mãe frente o diagnóstico do filho. Rev. InterScientia.2019; 7(1):54-65. Available from: https://periodicos.unipe.br/index.php/interscientia/article/view/918/614.
McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW. et al. A new definition of children with special health care needs. Pediatrics. 1998; 102(1):137-40. DOI: 10.1542/peds.102.1.137.
Santos VT, Minayo MCS. Mothers who care for technology-dependent children in home care. Physis. 2020; 30(4):e300406. DOI: http://dx.doi.org/10.1590/S0103-73312020300406.
Carvalho MSN, Menezes LA, Cruz Filho AD, Maciel, CMP. Desospitalização de crianças com condições crônicas complexas: perspectivas e desafios. Rio de Janeiro: Editora Valentina; 2019.
Viera JTS, Damasceno JG, Leão CDA, Santos ASF. Family approach in care of chronic health conditions. Rev. Univ. Vale Rio Verde. 2018; 16(2):1. DOI: http://dx.doi.org/10.5892/ruvrd.v16i2.4471.g10951268
Arrué AM, Neves ET, Magnago TSBS, Cabral IE, Gama SGN, Hökerberg YHM. Translation and adaptation of the Children with Special Health Care Needs Screener to Brazilian Portuguese. Cad. Saúde Pública. 2016; 32(6):e00130215. DOI: https://doi.org/10.1590/0102-311X00130215
Lopes ACC, Nóbrega VM, Matias M, Annanda FMB, Ramalho ELR, Collet N. Healthcare to youth with chronic illness. Rev. Fam., Ciclos Vida Saúde Contexto Soc. 2020; 2. Available from: https://www.redalyc.org/articulo.oa?id=497965721002
Neres LO, Santos HES, Melo KSB, Oliveira SR. Challenges of the nursing team in the family approach to children in palliative care. Brazilian J of Development. 2022; 8(3): 20063-76. DOI: 10.34117/bjdv8n3-282
Luz RO, Pieszak GM, Arrué AM, Gomes GC, Neves ET, Rodrigues AP. Therapeutic itinerary of families of children with special health needs Rev Rene. 2019; 20:e33937.DOI: 10.15253/2175-6783.20192033937
Alves Delmiro, A. R. da C., Acioli Gomes Pimenta, E., Medeiros da Nóbrega, V., Teixeira Bento Fernandes, L., & Cavalcanti Barros, G. Equipe multiprofissional no preparo para a alta hospitalar de crianças com condições crônicas. Ciênc. Cuid. Saúde. 2020; 19. DOI: https://doi.org/10.4025/ciencuidsaude.v19i0.50418
Santos MR, Wiegand DL, Sá NN, Misko MD, Szylit R. From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional. Rev Esc Enferm USP. 2019;53:e03521. DOI: http://dx.doi.org/10.1590/S1980-220X2018049603521
Streubert HJ, Carpenter DR. Ethnographic research approach. In: Qualitative reseach in nursing. Philadelphia: J.B. Lippincott; 1995.
Strauss A, Corbin J. Bases de la investigación cualitativa: técnicas y procedimientos para desarrollar la teoría fundamentada. Medelin: Universidad de Antioquia, Facultad de Enfermería; 2002. Available from: https://books.google.com.br/books/about/Bases_de_la_investigaci%C3%B3n_cualitativa.html?hl=es&id=TmgvTb4tiR8C&redir_esc=y
Conselho Nacional de Saúde (Brasil). Resolução nº. 466, de 12 de dezembro de 2012. Diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oficial da União 13 jun 2013; Seção 1.
Souza MHN, Nóbrega VM, N Collet. Social network of children with cronic disease: knowledge and practice of nursing. Rev. Bras. Enferm. 2020; 73(2):e20180371. DOI: http://dx.doi.org/10.1590/0034-7167-2018-0371
Aureliano WA. Family Therapeutic Trajectories: rare hereditary diseases involving long-term suffering. Ciênc. Saúde Colet. 2018; 23(2):369-80. DOI: https://doi.org/10.1590/1413-81232018232.21832017
Siqueira CSS, Reis AT, Pacheco STA. Models of care for families of technology-dependent children in a hospital context . Rev. Enferm. UERJ (Online) . 2017; 25:1-6. DOI: http://dx.doi.org/10.12957/reuerj.2017.27529
Pinto MMPS, Coutinho SED, Collet N. Chronic illness in childhood and attention from health services. Ciênc. Cuid. Saúde . 2016; 15(3):498-506. DOI: 10.4025/cienccuidsaude.v15i3.28575
Freitag VL, Milbrath VM, Schneider FVM, Lange C. The impact of the diagnosis of cerebral palsy to the family: integrative review J. Nurs. Health. 2017; 7(1):89-100. DOI: https:://doi.org/10.15210/JONAH.V7I1.6064
Oliveira CM, Marques JPC, Machado WD, Gomes DM, Freitas CASL, Silva MAM., Albuquerque IMN. Cuidado a famílias com pessoas em condições crônicas na atenção primária à saúde: revisão integrativa. Ciênc. Cuid. Saúde. 2020; 20. https://doi.org/10.4025/ciencuidsaude.v20i0.54403
Liboni LS, Leite E, Sacramento FCR, Oliveira RFR, Correa CF. Social impact of a child with cerebral palsy in the life of a family caregiver. R. Enferm. UFJF. 2018;4(1): 39-50. Available from: https://periodicos.ufjf.br/index.php/enfermagem/article/view/14015/7514.
Genovesi FF, Ferrari RAP. Maternal experience front the your child's cancer treatment. Rev. Urug. Enferm.2015; 10(1):11-21. Available from: http://rue.fenf.edu.uy/index.php/rue/article/view/3/2.
Viana IS, Silva LF, Cursino EG, Conceição DS, Goes FGB, Moraes JRMM. Educacional encounter of nursing and the relative of children with special health care needs. Texto & Contexto Enferm. 2018; 27(3):e5720016. DOI: https://doi.org/10.1590/0104-070720180005720016
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