Therapeutic itinerary of families of children with special health needs

Keywords: Disabled Children; Family; Pediatric Nursing; Health Services Accessibility.

Abstract

Objective: to describe the therapeutic itinerary of families of children with special health needs. Methods: this is a qualitative study carried out at the household of 14 families enrolled in primary health care. Results: Participant families reported negative feelings with the discovery of the diagnosis, which intensified with the absence of professional guidance. They faced difficulties of access by the Unified Health System, having to seek the private service to care for their children and fragility regarding their own rights. Conclusion: in the therapeutic itinerary of the families of children with special health needs, they suffer constant pilgrimages through health care networks seeking assistance and resolution.

References

Araújo JP, Silva RMM, Collet N, Neves ET, Toso BRGO, Vieira CS. History of the child’s health: conquers, policies and perspectives. Rev Bras Enferm. 2016; 67(6):1000-7. doi: http://dx.doi.org/10.1590/0034-7167.2014670620

Ministério da Saúde (BR). Política Nacional de Atenção Integral à saúde da criança. Brasília: Ministério da Saúde; 2015.

Cabral IE, Moraes JRMM. Family caregivers articulating the social network of a child with special health care needs. Rev Bras Enferm. 2015; 68(6):769-76. doi: http://dx.doi.org/10.1590/0034-7167.2015680612i

Neves ET, Cabral IE, Silveira A. Family network of children with special health needs: implications for Nursing. Rev Latino-Am Enfermagem. 2013; 21(2):562-70. doi: http://dx.doi.org/10.1590/S0104-11692013000200013

Conselho Nacional de Secretários de Saúde (BR). A atenção primária e as Redes de Atenção à Saúde. Brasília: CONASS; 2015.

Barbieri MC, Broekman GVDZ, Souza ROD, Lima RAG, Wernet M, Dupas G. Support network for families of children and adolescents with visual impairment: strengths and weaknesses. Ciênc Saúde Coletiva. 2016; 21(10):3213-22. doi: http://dx.doi.org/10.1590/1413-812320152110.19562016

Cabral ALLV, Martinez-Hemáez A, Andrade EIG, Cherchiglia ML. Itinerários terapêuticos: o estado da arte da produção científica no Brasil. Ciênc Saúde Coletiva. 2011; 16(11):4433-42. doi: http://dx.doi.org/10.1590/S1413-81232011001200016

Minayo MCS. Amostragem e saturação em pesquisa qualitativa: consensos e controvérsias. Rev Pesq Qual [Internet]. 2017 [citado 2018 dez. 13]; 5(7):1-12. Disponível em: https://editora.sepq.org.br/index.php/rpq/article/view/82/59

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: http://dx.doi.org/10.1590/0102-311X00130215

Macedo EC, Silva LR, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Latino-Am Enfermagem. 2015; 23(4):769-77. doi: http://dx.doi.org/10.1590/0104-1169.0196.2613.

Morais AC, Cohim ACOS, Almeida CR, Lima KDF. Therapeutic itinerary of children’s mothers after the Kangaroo Method. Ciênc Cuid Saúde. 2017; 16(2). doi: http://dx.doi.org/10.4025/cienccuidsaude.v16i2.35994

Mendes EV. Entrevista: a abordagem das condições crônicas pelo Sistema Único de Saúde. Ciênc Saúde Coletiva. 2018; 23(2):431-6. doi: http://dx.doi.org/10.1590/1413-81232018232.16152017

Pinto MMPS, Coutinho SED, Collet N. Chronic illness in childhood and attention from health services. Ciênc Cuid Saúde. 2016; 15(3):498-506. doi: http://dx.doi.org/10.4025/cienccuidsaude.v15i3.28575

Brondani JE, Leal FZ, Potter C, Silva RM, Noal HC, Perrando MS. Desafios da referência e contrarreferência na atenção em saúde na perspectiva dos trabalhadores. Cogitare Enferm. 2016; 21(1):1-8. doi: http://dx.doi.org/10.5380/ce.v21i1.43350

Duarte ED, Silva KL, Tavares TS, Nishimoto CLJ, Silva PM, Sena RR. Care of children with a chronic condition in primary care: challenges to the healthcare model. Texto Contexto Enferm. 2015; 24(4):1009-17. doi: http://dx.doi.org/10.1590/0104-0707201500003040014

Barbosa TA, Reis KMN, Lomba GO, Alves GV, Braga PP. Support network and social support for children with special health care need. Rev Rene. 2016; 17(1):60-6. doi: http://dx.doi.org/10.15253/2175-6783.2016000100009

Cerqueira MMF, Alves RO, Aguiar MGG. Experiences in the therapeutic itineraries of mothers of children with intellectual disabilities. Ciênc Saúde Coletiva. 2016; 21(10):3223-32. doi: http://dx.doi.org/10.1590/1413-812320152110.17242016

Belmiro SSDR, Miranda FAN, Moura IBL, Carvalho SR, Monteiro AI. Atuação da equipe de enfermagem na assistência à criança com deficiência na atenção primária à saúde. Rev Enferm UFPE on line [Internet]. 2017 [citado 2018 dez 13]; 11(Suppl.4):1679-86. Disponível em: https://periodicos.ufpe.br/revistas/revistaenfermagem/article/viewFile/15265/18065

Figueiredo SV, Sousa ACC, Gomes ILV. Children with special health needs and family: implications for Nursing. Rev Bras Enferm. 2016; 69(1):79-85. doi: http://dx.doi.org/10.1590/0034-7167.2016690112i

Costa NR, Marcelino MA, Duarte CMR, Uhr D. Social protection and people with disabilities in Brazil. Ciênc Saúde Coletiva. 2016; 21(10):3037-47. doi: http://dx.doi.org/10.1590/1413-812320152110.18292016

Published
2019-03-20
Section
Research Article