Comprehensive Care of Children with Special Health Needs: Rebuilding Life Projects
DOI:
https://doi.org/10.20435/pssa.v1i1.2971Keywords:
prática integral de cuidados de saúde, saúde da criança, humanização da assistênciaAbstract
Introduction: the challenges faced by families of children with special health care needs to secure their rights are intensified in the absence of comprehensive care. Aim: to understand the challenges experienced by children with special health care needs and their families related to the practice of comprehensive care and the reconstruction of their life projects. Method: a qualitative study grounded in comprehensive care and hermeneutic-dialectical principles. Nineteen caregivers and fifteen primary care nurses were interviewed. From the inductive thematic analysis, four categories emerged: absence of support and guidance in the diagnostic process: challenges and care relationships; lack of interest and empathy as ontological barriers to comprehensive care practice; disorganization and insufficient professional training as obstacles to care; strengthening therapeutic encounters for the construction of life projects. Conclusion: the fragility of dialogical relationships impaired the practice of comprehensive care and the pursuit of life projects.
References
Andrade, G. K. S., Teston, E. F., Marcon, S. S., Giacon-Arruda, B. C. C., Amorim, M. D., Sato, D. M., Werle, J. E., Silva, J. L. (2022). Congenital Zika virus syndrome: Care in light of the Brazilian Unified Health System principles. Revista Brasileira de Enfermagem, 75(2), e20210146. https://doi.org/10.1590/0034-7167-2021-0146 DOI: https://doi.org/10.1590/0034-7167-2021-0146
Ayres, J. R. C. M. (2004). O cuidado, os modos de ser (do) humano e as práticas de saúde. Saúde & Sociedade, 13(3). https://doi.org/10.1590/S0104-12902004000300003 DOI: https://doi.org/10.1590/S0104-12902004000300003
Azevedo, C. S., Freire, I. M., & Moura, L. N. F. (2021). “Aí começou a saga...”: Fragilidade psicossocial na epidemia do vírus Zika. Cadernos de Saúde Pública, 37(7), e00121420. https://doi.org/10.1590/0102-311X00121420 DOI: https://doi.org/10.1590/0102-311x00121420
Brazelton, T. B., & Greenspan, S. I. (2002). As necessidades essenciais das crianças: O que toda criança precisa para crescer, aprender e se desenvolver. Artmed.
Casacio, G. D. M., Ferrari, R. A. P., Zilly, A., & Silva, R. M. M. (2022). Itinerário terapêutico de crianças com necessidades especiais de saúde: Análise guiada por sistemas de cuidado. Revista Gaúcha de Enfermagem, 43, e20220115. https://doi.org/10.1590/1983-1447.2022.20210115 DOI: https://doi.org/10.1590/1983-1447.2022.20210115.en
Drossman, D. A., Chang, L., Deutsch, J. K., Ford, A. C., Halpert, A., Kroenke, K., Nurko, S., Ruddy, J., Snyder, A., Sperber, A. (2021). A review of the evidence and recommendations on communication skills and the patient-provider relationship: A Rome Foundation Working Team report. Gastroenterology, 161(5), 1670–1688. https://doi.org/10.1053/j.gastro.2021.07.037 DOI: https://doi.org/10.1053/j.gastro.2021.07.037
Easterlin, M. C., Berdahl, C. T., Rabizadeh, S., Spiegel, B., Agoratus, L., Hoover, C., & Dudovitz, R. (2020). Child and family perspectives on adjustment to and coping with pediatric inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 71(1), 16–27. https://doi.org/10.1097/MPG.0000000000002693 DOI: https://doi.org/10.1097/MPG.0000000000002693
Fabris-Zavaglia, M. M., Visintin, C. D. N., & Aiello-Vaisberg, T. M. J. (2022). Maternagem de filhos com dificuldades graves de desenvolvimento. Psico, 53(1), e37103. https://doi.org/10.15448/1980-8623.2022.1.37103 DOI: https://doi.org/10.15448/1980-8623.2022.1.37103
Gadamer, H. G. (2015). Verdade e método I: Traços fundamentais de uma hermenêutica filosófica (15ª ed.). Editora Vozes.
Gallardo, E. M. M. T., Camelio, A. J. F., Burgos, C. I. S., Rodríguez, C. D. L. O., Molina, C. A. V., & Lizama, C. F. V. (2020). Uma aproximação da experiência de viver junto a uma criança com Transtorno do Espectro Autista a partir da narrativa familiar de adultos significativos. Salud & Sociedad, 10(3), 210–225. https://doi.org/10.22199/issn.0718-7475-2019-03-013 DOI: https://doi.org/10.22199/issn.0718-7475-2019-03-013
Geweniger, A., Haddad, A., Barth, M., Hogl, H., Mund, A., Insan, S., & Langer, T. (2022). Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: A cross-sectional study. BMJ Paediatrics Open, 6, e001509. https://doi.org/10.1136/bmjpo-2022-001509 DOI: https://doi.org/10.1136/bmjpo-2022-001509
Graaf, G., Baiden, P., Keyes, L., & Boyd, G. (2022). Barriers to mental health services for parents and siblings of children with special health care needs. Journal of Child and Family Studies, 31, 881-895. https://doi.org/10.1007/s10826-022-02228-x DOI: https://doi.org/10.1007/s10826-022-02228-x
Machado, G. A., Dias, B. M., Silva, J. J., Bernardes, A., & Gabriel, C. S. (2021). Avaliação de atributos da Atenção Primária à Saúde: A perspectiva dos profissionais. Acta Paulista de Enfermagem, 34, eAPE00973. https://doi.org/10.37689/acta-ape/2021AO00973 DOI: https://doi.org/10.37689/acta-ape/2021AO00973
McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., Perrin, J. M., Shonkoff, J. P., Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1), 137–140. https://doi.org/10.1542/peds.102.1.137 DOI: https://doi.org/10.1542/peds.102.1.137
Mendes, I. A., Chavaglia, S. R., Godoy, S., Silva, I. R., Almeida, E. W., & Souza, M. C. (2021). Avaliação da empatia de graduandos de enfermagem. Acta Paulista de Enfermagem, 34, eAPE002235. https://doi.org/10.37689/actaape/2021AO002235 DOI: https://doi.org/10.37689/acta-ape/2021AO002235
Minayo, M. C. S. (2012). Análise qualitativa: Teoria, passos e fidedignidade. Ciência & Saúde Coletiva, 17(3), 621–626. https://doi.org/10.1590/S1413-81232012000300007 DOI: https://doi.org/10.1590/S1413-81232012000300007
Morelato, C. S., Dorneles, L. L., Martins, V. P., Góes, F. S. N., Viana, A. L., Brunello, M. E. F., & Camargo, R. A. A. (2021). Receiving spontaneous demand in Primary Care: Nurses’ learning needs. Revista Brasileira de Enfermagem, 74(2), e20200317. https://doi.org/10.1590/0034-7167-2020-0317 DOI: https://doi.org/10.1590/0034-7167-2020-0317
Neves, E. T., Okido, A. C. C., Buboltz, F. L., Santos, R. P., & Lima, R. A. G. (2019). Accessibility of children with special health needs to the health care network. Revista Brasileira de Enfermagem, 72(3), 65–71. https://doi.org/10.1590/0034-7167-2017-0899 DOI: https://doi.org/10.1590/0034-7167-2017-0899
Queiroz, D. M., Oliveira, L. C., Araújo-Filho, P. A., & Silva, M. R. F. (2021). Challenges and potentials of the production of comprehensive care in Primary Health Care in Brazil. Revista Brasileira de Enfermagem, 74(5), e20210008. https://doi.org/10.1590/0034-7167-2021-0008 DOI: https://doi.org/10.1590/0034-7167-2021-0008
Tinoco, V. C., Dornela, T. T., Castro, G. G. de, & Peres, T. S. (2023). Estresse em mães com filhos diagnosticados com autismo. Revista Psicologia e Saúde, 14(4), 35–42. https://doi.org/10.20435/pssa.v14i4.2023 DOI: https://doi.org/10.20435/pssa.v14i4.2023
Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042 DOI: https://doi.org/10.1093/intqhc/mzm042
Vasconcellos, R. N., Souza, M. H. N., Nóbrega, V. N., & Collet, N. (2022). A família da criança com necessidades especiais de saúde e suas relações sociais. Revista Brasileira de Enfermagem, 75(2), e20210031. https://doi.org/10.1590/0034-7167-2021-0031 DOI: https://doi.org/10.1590/0034-7167-2021-0031
Wolkers, P. C. B., Pina, J. C., Wernet, M., Furtado, M. C. C., & Mello, D. F. (2019). Crianças com diabetes mellitus tipo 1: Vulnerabilidade, cuidado e acesso à saúde. Texto & Contexto Enfermagem, 28, e20160566. https://dx.doi.org/10.1590/1980-265X-TCE-2016-0566 DOI: https://doi.org/10.1590/1980-265x-tce-2016-0566
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