Adaptation experienced by families from diagnosis to treatment of the child's chronic condition
Abstract
Objective: To know the adaptation process experienced by families from diagnosis to treatment of the child’s chronic condition.
Material and method: This was a multicenter, qualitative study. Data presented refer to the collection carried out in the municipality of Pelotas, state of Rio Grande do Sul, in 2019. Participants were fifteen family members/caregivers of children with chronic conditions admitted to pediatric units in hospitals. Semi-structured interviews were applied and the information was analyzed through thematic analysis and interpreted using the theoretical framework: The Nursing Theory – Roy’s adaptation model.
Results: The group of participants was composed of ten mothers, three fathers and two grandmothers. Family members follow a trajectory in search of the child’s diagnosis, facing difficulties in this experience, such as the impact of the diagnosis, risks, and repercussions of the disease, as well as the lack of information and ineffective communication between professionals and family members, in addition to difficulties in moving to the treatment site.
Final considerations: It is necessary to critically reflect on the approach to families of children with chronic conditions, aiming at identifying the situations of vulnerability faced so that professionals can serve them, striving for comprehensive care based on their demands. Furthermore, it is essential to adopt effective communication, improving the work process to stimulate dialogue and understanding with families about the diagnosis, risks, treatment, and consequences of the child’s chronic disease.
Downloads
References
Roy C, Andrews HA. The Roy adaptation model. 3a ed. Stamford: Applet Lang; 2009.
Jorge-Junior AF, Colares GC, Filho IBMR, Silva LS. Doenças crônicas não transmissíveis na infância: revisão integrativa de Hipertensão Arterial Sistêmica, Diabetes Mellitus e Obesidade. Saúde dinâmica. 2020;2(2):39-55. Disponível em: http://revista.faculdadedinamica.com.br/index.php/saudedinamica/article/view/36/41
Ichikawa CRF, Santos SSC, Bousso RS, Sampaio PSS. O manejo familiar da criança com condições crônicas sob a ótica da teoria da complexidade de Edgar Morin. Rev. enferm. Cent.-Oeste Min. 2018;8:e1276. Disponível em: https://doi.org/10.19175/recom.v8i0.1276
Pimenta EAG, Wanderley LSL, Soares CCD, Delmiro ARCA. Cuidar de crianças com necessidades especiais de saúde: do diagnóstico às demandas de cuidados no domicílio. Braz. J. of Develop. 2020;6(8):58506-21. Disponível em: https://www.brazilianjournals.com/index.php/BRJD/article/view/15052
Neves ET, Okido ACC, Buboltz FL, Santos RP, Lima RAG. Acesso de crianças com necessidades especiais de saúde à rede de atenção. Rev. bras. enferm. 2019;72(Suppl 3):71-7. Disponível em: https://doi.org/10.1590/0034-7167-2017-0899
Lopes ACC, Nóbrega VM, Santos MM, Batista AFMB, Ramalho ELR, Collet N. Cuidado à saúde nas doenças crônicas infanto-juvenis. REFACS (online). 2020;8(Supl.2). Disponível em: https://doi.org/10.18554/refacs.v8i0.4286
Freitas TAR, Silva KL, Nóbrega MML, Collet N. Proposta de cuidado domiciliar a crianças portadoras de doença renal crônica. Rev Rene (Online). 2011;12(1):111-9. Disponível em: http://periodicos.ufc.br/rene/article/view/4192/3245
Hennink MM, Kaise BK, Marconi VC. Code Saturation Versus Meaning Saturation: How Many Interviews Are Enough? Qual. health res. 2017;27(4):591-608. Available from: https://doi.org/10.1177/1049732316665344
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int. j. qual. health care. 2015;19(6):349-57. Available from: https://doi.org/10.1093/intqhc/mzm042
Braun V, Clarke V, Hayfield N, Terry G. Thematic Analysis. In: Liamputtong P. (eds) Handbook of Research Methods in Health Social Sciences. Springer, Singapore. 2019;48:843-60. Available from: https://doi.org/10.1007/978-981-10-5251-4_103
Ministério da Saúde. Resolução n° 466, de 12 de dezembro de 2012. Aprova normas regulamentadoras de pesquisas envolvendo seres humanos. Diário Oficial da União. Brasília, DF, 2013
Pedrosa RKB, Guedes ATA, Soares AR, Vaz EMC, Collet N, Reichert APS. Itinerário da criança com microcefalia na rede de atenção à saúde. Esc. Anna Nery Rev. Enferm. 2020;24(3):e20190263. Disponível em: http://dx.doi.org/10.1590/2177-9465-ean-2019-263
Gomes GC, Moreira MAJ, Silva CD, Mota MS, Nobre CMG, Rodrigues EF. Vivências do familiar frente ao diagnóstico de diabetes mellitus na criança/adolescente. J. nurs. health. 2019;9(1):e199108. Disponível em: https://doi.org/10.15210/jonah.v9i1.13393
Favaro LC, Marcon SS, Nass EMA, Reis P, Ichisato SMT, Bega AG, Paiano M, Lino IGT. Percepção do enfermeiro sobre assistência às crianças com necessidades especiais de saúde na atenção primária. REME rev. min. enferm. 2020;24:e-1277. Disponível em: http://www.dx.doi.org/10.5935/1415-2762.20200006
Frizzo NS, Quintana AM, Salvagni A, Barbieri A, Gebert L. Significações dadas pelos progenitores acerca do diagnóstico de câncer dos filhos. Psicol. ciênc. prof. 2015;35(3):959-72. Disponível em: http://www.dx.doi.org/10.1590 / 1982-3703001772013
Souza RFA, Souza JCP. Os desafios vivenciados por famílias de crianças diagnosticadas com transtorno de espectro autista. Perspectivas em Diálogo. 2021;8(16):164-82. Disponível em: https://periodicos.ufms.br/index.php/persdia/article/view/10668
Xavier DM, Gomes GC, Cazer-vaz MR. Sentidos atribuídos por familiares acerca do diagnóstico de doença crônica na criança. Rev. bras. enferm. 2020;73(2):1-8. Disponível em: http://dx.doi.org/10.1590/0034-7167-2018-0742
Santos BA, Milbrath VM, Freitag VL, Nunes NJS, Gabatz RIB, Silva MS. O impacto do diagnóstico de paralisia cerebral na perspectiva da família. REME rev. min. enferm. 2019;23:e:1187. Disponível em: http://dx.doi.org/10.5935/1415-2762.20190035
Silveira A, Neves ET. Estratégias para manutenção da vida de adolescentes com necessidades especiais de saúde. Research, Society and Development. 2020;9(6):e88963387. Disponível em: https://doi.org/10.33448/rsd-v9i6.3387
Nardi AC, Brito PT, Albarado ÁJ, Prado EA, Andrade NF, Sousa MF, Mendonça AV. Comunicação em saúde no Brasil. Rev. Saúde Pública Paraná (Online). 2018;1(2),13–22. Disponível em: https://doi.org/10.32811/25954482-2018v1n2p13
Fontana G, Chesani FH, Menezes M. As significações dos profissionais da saúde sobre o processo de alta hospitalar. Saúde e transformações sociais. 2017;8(2):86-95. Disponível em: http://incubadora.periodicos.ufsc.br/index.php/saudeetransformacao/article/view/4230/4994
Bazzan JS, Marten VM, Gabatz RI, Klumb MM, Schwartz E. Comunicação com a equipe de saúde intensivista: perspectiva da família de crianças hospitalizadas. Referência. 2021;5(7):e21010. Disponível em: https://doi.org/10.12707/RV21010
Lise F, Schwartz E, Milbrath VM, Castelblanco DC, Ângelo M, Garcia RP. Incertezas de mães de crianças em tratamento conservador renal. Esc. Anna Nery Rev. Enferm. 2018;22(2):e20170178. Disponível em: https://doi.org/10.1590/2177-9465-EAN-2017-0178
Bolaséli LT, Silva CS, Wendling MI. Resiliência familiar no tratamento de doenças crônicas em um Hospital Pediátrico: Relato de três casos. Pensando fam. 2019;23(2):134-46. Disponível em: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1679-494X2019000200011&lng=pt&nrm=iso&tlng=pt
The works published in this magazine are subject to the following terms:
1. The Publications Service of the University of Murcia (the publisher) preserves the copyright of the published works, and encourages and allows the reuse of the works under the license for use stated in point 2.
© Servicio de Publicaciones, Universidad de Murcia, 2011 (© Publications Service, University of Murcia, 2011)
2. The works are published in the electronic edition of the journal under Creative Commons Reconocimiento-NoComercial-SinObraDerivada 3.0 España(texto legal) “ a Attribution-NonCommercial-NoDerivatives 3.0 Spain license (legal text)”. They can be copied, used, broadcasted, transmitted and publicly displayed, provided that: i) the authorship and original source of their publication (journal, publisher and URL) are cited; (ii) are not used for commercial purposes; iii) the existence and specifications of this license is mentioned.
3. Conditions of self-archiving. Authors are allowed and encouraged to electronically disseminate the pre-print (pre-reviewed ) and / or post-print (reviewed and accepted for publication) versions of their works prior to publication, as it ensures a wider circulation and dissemination which may lead to a possible increase in its mention and a higher scope among the academic community. RoMEO color: green.
