Facilities and difficulties experienced by the family in caring for children with special health needs

Authors

DOI:

https://doi.org/10.33448/rsd-v9i10.8761

Keywords:

Family; Child; Children with disabilities; Nursing.

Abstract

Objectives: to know the family's facilities and difficulties in caring for children with special health needs. Methodology: of exploratory and descriptive qualitative research carried out with sixteen family members of children with special health needs from a Neonatal Intensive Care Unit in southern Brazil. Data collection took place between March and July 2016 through interviews and submitted to thematic analysis. Approved by the Health Research Ethics Committee (CEPAS) under number 063/2014. Results: as facilities mentioned the encouragement and preparation acquired during hospitalization in the Neonatal Intensive Care Unit, having access to the different health services necessary for the treatment of the child and receiving a financial benefit from the government, having a family support network, recognition of the child's abilities and the fact that the child feels with high self-esteem. As difficulties they referred to the negative impact that hospitalization can represent, fear of the child's loss, having to divide themselves between the child in the hospital and the rest of the family, also affecting the marriage, lack of time for the caregiver's self-care, and to impose limits on children's education. Conclusion of the study: family care is complex, and it is necessary to review and reflect the care practices by health professionals, improving interactive methods with the family to support them in experiencing care for children with special health needs.

References

Begen, F. M., Barnett, J., Barber, M., Payne, R., Gowland, M. H., & Lucas, J. S. (2017). Parents' and caregivers' experiences and behaviours when eating out with children with a food hypersensitivity. BMC public health, 18(1), 38. https://doi.org/10.1186/s12889

Boudreau, A. A., Goodman, E., Kurowski, D., Perrin, J. M., Cooley, W. C., & Kuhlthau, K. (2014). Care coordination and unmet specialty care among children with special health care needs. Pediatrics, 133(6), 1046-1053.

Bradshaw, S., Bem, D., Shaw, K., Taylor, B., Chiswell, C., Salama, M., Bassett, E., Kaur, G., & Cummins, C. (2019). Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity - a scoping review. BMC pediatrics, 19(1), 301. https://doi.org/10.1186/s12887-019-1648-7

Braga, P. P., & Sena, R. R. D. (2017). Devir cuidadora de prematuro e os dispositivos constituintes da continuidade da atenção pós-alta. Texto & Contexto-Enfermagem, 26(3).

Cabral, I. E., & de Moraes, J. R. M. M. (2015). Family caregivers articulating the social network of a child with special health care needs. Revista brasileira de enfermagem, 68(6), 769-776.

Carvalho, V. F. D. C., Coutinho, C., & Souza, C. S. (2016). Parto prematuro: enfoques presentes en la producción científica nacional e internacional. Revista electrónica trimestral de Enfermería, (42).

Costa, R. F. D., Zeitoune, R. C. G., Queiroz, M. V. O., Gómez García, C. I., & Ruiz García, M. J. (2015). Adolescent support networks in a health care context: the interface between health, family and education. Revista da Escola de Enfermagem da USP, 49(5), 741-747.

Cruz C.T., Zamberlan K.C., Silveira A., Buboltz F.L., Silva J.H., Neves E.T. (2017). Cuidado à criança com necessidades especiais de cuidados contínuos e complexos: percepção da enfermagem. REME – Rev Min Enferm. [citado em]; 21:e-1005. Disponível em: DOI: 10.5935/1415-2762.

de Sousa, F. C. P., Montenegro, L. C., Goveia, V. R., Corrêa, A. dos R., Rocha, P. K., & Manzo, B. F. (2017). Family participation in patient safety in neonatal units from the nursing perspective. Texto & Contexto Enfermagem, 26(3), 1-8.

Esteves, J. de S., da Silva, L. F., da Conceição, D. S., & Paiva, E. D. (2015). Families' concerns about the care of children with technology-dependent special health care needs. Investigacion y educacion en enfermeria, 33(3), 547-555.

Figueiredo, S. V., de Sousa, A. C. C., & Gomes, I. L. V. (2016). Children with special health needs and family: implications for Nursing. Revista brasileira de enfermagem, 69(1), 79-85.

Melo, R. A., Araújo, A. K. C., Marques, W. F., dos Santos, N. M., Fernandes, F. E. C. V., & Bezerra, C. S. (2016). Sentimentos de mães de recém-nascidos internados em uma unidade de terapia intensiva neonatal. ID on line REVISTA DE PSICOLOGIA, 10(32), 88-103.

Menezes, M., Moré, C. L. O. O., & Barros, L. (2016). As redes sociais dos familiares acompanhantes durante internação hospitalar de Crianças. Revista da Escola de Enfermagem da USP, 50(SPE), 107-113.

Minayo, M. C. S. (2014). O desafio do conhecimento: pesquisa qualitativa em saúde. 14ª ed. São Paulo: Hucitec.

Ministério da Saúde (BR). Protocolos da atenção básica: saúde da criança /Ministério da Saúde. Brasília (DF): Instituto Sírio-Libanês de Ensino e Pesquisa, 2016.

Ministério da Saúde (BR). Resolução número 466/2012. Diretrizes e Normas regulamentadoras em Pesquisas envolvendo Seres Humanos. Brasília (DF): Conselho Nacional de Saúde, 2012.

Ministério do Desenvolvimento Social e Combate à Fome (BR). Lei Orgânica de Assistência Social: LOAS. Brasília (DF): Ministério do Desenvolvimento Social e Combate à Fome; 2009.

Okido, A. C. C., Cunha, S. T. D., Neves, E. T., Dupas, G., & Lima, R. A. G. D. (2016). Technology-dependent children and the demand for pharmaceutical care. Revista brasileira de enfermagem, 69(4), 718-724.

Pereira, A. S., et al. (2018). Metodologia da pesquisa científica. [e-book]. Santa Maria. Ed. UAB/NTE/UFSM. Recuperado de, https://repositorio.ufsm.br/bitstream/handle/1/15824 /Lic_Computacao_Metodologia-Pesquisa-Cientifica.pdf?sequence=1.

Ramos L.D.C., Moraes J.R.M.M., Silva L.F., Goés F.G.B. (2015). Maternal care at home for children with special needs. Investigación y Educación en Enfermería, 33(3), 492-499.

Reis, K. M. N., Alves, G. V., Barbosa, T. A., Lomba, G. de O., & Braga, P. P. (2017). A vivencia da família no cuidado domiciliar à criança com necessidades especiais de saúde. Ciencia y enfermería, 23(1), 45-55.

Silva, M. E. D. A., Moura, F. M. D., Albuquerque, T. M., Reichert, A. P. D. S., & Collet, N. (2017). Rede e apoio social na doença crônica infantil: compreendendo a percepção da criança. Texto & Contexto-Enfermagem, 26(1), 1-10.

Simonasse, M. F., & de Moraes, J. R. M. M. (2015). Crianças com necessidades especiais de saúde: impacto no cotidiano familiar. Revista de Pesquisa Cuidado é Fundamental Online, 7(3), 2902-2909.

Published

08/10/2020

How to Cite

LEITE, F. L. L. de M.; GOMES, G. C.; MINASI, A. S. A.; NOBRE, C. M. G. .; SOARES, M. M. . Facilities and difficulties experienced by the family in caring for children with special health needs. Research, Society and Development, [S. l.], v. 9, n. 10, p. e5619108761, 2020. DOI: 10.33448/rsd-v9i10.8761. Disponível em: https://www.rsdjournal.org/index.php/rsd/article/view/8761. Acesso em: 28 jun. 2022.

Issue

Section

Health Sciences