Everyday marks: experience of the woman-mother and caregiver of children with special health needs
DOI:
https://doi.org/10.33448/rsd-v9i11.9557Keywords:
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.
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
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2020 Géssica Nobre; Gutembergue Santos de Sousa; Maria Mônica Machado de Aguiar Lima; Yara Macambira Santana Lima; Maria Goreth Silva Ferreira
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
1) Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2) Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3) Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work.