Everyday marks: experience of the woman-mother and caregiver of children with special health needs

Authors

DOI:

https://doi.org/10.33448/rsd-v9i11.9557

Keywords:

People with disabilities; Caregivers; Nursing care; Home care services.

Abstract

Objective: to understand the experience and daily life of women-mothers and caregivers of children with special health needs and the implications for their health. Methodology: qualitative research carried out with ten mothers of children with special health needs, through semi-structured interviews. Data processing took place with the aid of the IRAMUTEQ software. The data were organized into thematic categories with subsequent content analysis. Results: a textual corpus composed of 10 Initial Context Units or interviews was analyzed, in which 451 text segments or Elementary Context Unit and 345 analyzed segments were obtained, that is, 76.5% of the analyzed corpus. Mothers experience social isolation, overload of activities and physical exhaustion, resulting in the need for therapies and care to ensure their physical, psychosocial and emotional health. Final considerations: it became evident that being the mother of a child with special health needs represents a singularity with the object of care of this mother woman, also demonstrating a strong neglect in the health care of women-mothers in favor of their children.

Author Biographies

Géssica Nobre, Universidade do Estado do Pará

Residente no Programa de Residência Multiprofissional em Atenção Integral em Ortopedia e Traumatologia. Santarém, Pará, Brasil.

Gutembergue Santos de Sousa, Universidade Federal do Mato Grosso/Programa de Pós-Graduação em Enfermagem

Doutorando do Programa de Pós-Graduação em Enfermagem (Doutorado). Cuiabá, Mato Grosso, Brasil.

Maria Mônica Machado de Aguiar Lima, Universidade do Estado do Pará

Professora do Curso de Graduação em Enfermagem

Mestre em Doenças Tropicais

Yara Macambira Santana Lima, Universidade do Estado do Pará

Doutora em Enfermagem. Professora adjunto do Curso de Graduação em Enfermagem

Maria Goreth Silva Ferreira, Universidade do Estado do Pará

Professora Adjunto do Curso de Graduação em Enfermagem

Doutora em Enfermagem

References

Alves, J. M. N. O., Amendoeira, J. J. P., & Charepe, Z. B. (2017). The parental care partnership in the view of parents of children with special health needs. Revista Gaúcha de Enfermagem, 38(4), e2016-0070. Epub May 21, 2018.https://doi.org/10.1590/1983-1447.2017.04.2016-0070

Alves, L. L., Silva, L. F. da, Cursino, E. G., Góes, F. G. B., Silva e Sousa, A. D. R., & Moraes, J. R. M. M. de. (2019). Preparation of the discharge of relatives of children using antibiotics: contributions of nursing. Escola Anna Nery, 23(4), e20190108. Epub October 14, 2019.https://dx.doi.org/10.1590/2177-9465-ean-2019-0108

Barak, S., Elad, D., Silberg, T., Brezner, A. (2017). Mothers and fathers of children with cerebral palsy: differences in future expectations. J Dev Phys Disabil, 29, 223–2400. https://doi.org/10.1007/s10882-016-9521-1

Dias, B. C., Ichisato, S. M. T., Marchetti, M. A., Neves, E. T., Higarashi, I. H., & Marcon, S. S. (2019). Challenges of family caregivers of children with special needs of multiple, complex and continuing care at home. Escola Anna Nery, 23(1), e20180127. Epub January 24, 2019.https://doi.org/10.1590/2177-9465-ean-2018-0127

Figueiredo, S. V., Sousa, A. C. C. de, & Gomes, I. L. V. (2016). Children with special health needs and family: implications for Nursing. Revista Brasileira de Enfermagem, 69(1), 88-95. https://doi.org/10.1590/0034-7167.2016690112i

Guerra, C. S., Dias, M. D., Filha, M. O. F., Andrade, F. B. de, Reichert, A. P. S., & Araújo, V. S. (2015). From the dream to reality: experience of mothers of children with disabilities. Texto & Contexto - Enfermagem, 24(2), 459-466. https://doi.org/10.1590/0104-07072015000992014

Mendes, R. M., & Miskulin, R. G. S. (2017). A análise de conteúdo como uma metodologia. Cadernos de Pesquisa, 47(165), 1044-1066. https://dx.doi.org/10.1590/198053143988

Neves, E. T., Silveira, A. da, Arrué, A. M., Pieszak, G. M., Zamberlan, K. C., & Santos, R. P. dos. (2015). Network of care of children with special health care needs. Texto & Contexto - Enfermagem, 24(2), 399-406. https://doi.org/10.1590/0104-07072015003010013

Nogueira Reis, K. M., Vilaça Alves, G., Araújo Barbosa, T., de Oliveira Lomba, G., & Pinto Braga, P. (2017). A VIVÊNCIA DA FAMILIA NO CUIDADO DOMICILIAR À CRIANÇA COM NECESSIDADES ESPECIAIS DE SAÚDE. Ciencia y enfermería, 23(1), 45-55. https://dx.doi.org/10.4067/S0717-95532017000100045

Oliveira, D. M. de, Rena, P. B. O., Mendonça, E. T. de, Pereira, E. T. , Jesus, M. C. P. de, & Merighi, M. A. B. (2016). The operative group as a care learning tool for mothers of children with disabilities. Escola Anna Nery, 20(3), e20160077. Epub June 14, 2016.https://doi.org/10.5935/1414-8145.20160077

Rutberg, S., & Bouikidis, C. D. (2018). Focusing on the Fundamentals: a simplistic differentiation between qualitative and quantitative research. Nephrol Nurs J, 45(2):209‐212. https://pubmed.ncbi.nlm.nih.gov/30303640/

Simonasse, M., Moraes, J. (2015). Children with special health care needs: impact on familiar daily routine. Revista de Pesquisa: Cuidado é Fundamental Online, 7(3), 2902-2909. http://doi.org/10.9789/2175-5361.2015.v7i3.2902-2909

Siqueira, C., Reis, A., & Pacheco, S. (2017). Modelos de cuidado às famílias de crianças dependentes de tecnologia em contexto hospitalar [Models of care for families of technology-dependent children in a hospital context]. Revista Enfermagem UERJ, 25, e27529. doi:https://doi.org/10.12957/reuerj.2017.27529

Souza, M. A. R. de, Wall, M. L., Thuler, A. C. M. C., Lowen, I. M. V., & Peres, A. M. (2018). The use of IRAMUTEQ software for data analysis in qualitative research. Revista da Escola de Enfermagem da USP, 52, e03353. Epub October 04, 2018.https://dx.doi.org/10.1590/s1980-220x2017015003353

Viana, I. S., Silva, L. F. da, Cursino, E. G., Conceição, D. S. da, Goes, F. G. B., & Moraes, J. R. M. M. de. (2018). EDUCATIONAL ENCOUNTER OF NURSING AND THE RELATIVES OF CHILDREN WITH SPECIAL HEALTH CARE NEEDS. Texto & Contexto - Enfermagem, 27(3), e5720016. Epub August 06, 2018.https://doi.org/10.1590/0104-070720180005720016

Published

04/11/2020

How to Cite

NOBRE, G.; SOUSA, G. S. de; LIMA, M. M. M. de A.; LIMA, Y. M. S. .; FERREIRA, M. G. S. Everyday marks: experience of the woman-mother and caregiver of children with special health needs. Research, Society and Development, [S. l.], v. 9, n. 11, p. e649119557, 2020. DOI: 10.33448/rsd-v9i11.9557. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/9557. Acesso em: 22 nov. 2024.

Issue

Section

Health Sciences