Holy poison: meanings attributed by family caregivers to pediatric chemotherapy
Abstract
Objective: To understand the meanings that family caregivers of children and adolescents with cancer attribute to chemotherapy treatment. Method: A qualitative study, with a supplementary and expanded secondary analysis of two studies conducted in pediatric wards and outpatient clinics in São Paulo, Brazil. Data collection was carried out in 2017 and 2018, respectively. Data were collected through semi-structured interviews with 37 family caregivers and analyzed using inductive content analysis. Results: The sample was predominantly composed of mothers. Chemotherapy was perceived as a paradox between good and evil, described as a “holy poison” that triggers a range of emotions. Participants attributed to this treatment the meanings of a daily life filled with challenges, characterized by difficulties in dealing with the effects of therapy. Final considerations: Family caregivers perceive chemotherapy as a paradoxical “holy poison,” as a treatment that, despite temporarily weakening the child, is essential for managing the disease. This study enriches the body of scientific literature by expanding the discussion on the topic. Additionally, the results obtained provide valuable information for healthcare professionals and allow for a better understanding of the families' perspective during the complex process of pediatric chemotherapy.
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Ministério da saúde. Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA) ABC do câncer: abordagens básicas para o controle do câncer. 6a edição revista e atualizada [Internet]. 2020. [Citado Out 22]. Disponível em: https://www.inca.gov.br/sites/ufu.sti.inca.local/files//media/document/livro_abc_6ed_0.pdf.
Ministério da Saúde. Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA) Estimativa 2020: incidência de câncer no Brasil [Internet]. INCA - Instituto Nacional de Câncer. 2019. [Citado Out 22]. Disponível em: https://www.inca.gov.br/publicacoes/livros/estimativa-2020-incidencia-de-cancer-no-brasil.
Urtasun Erburu A, Herrero Cervera MJ, Cañete Nieto A. Cáncer en los primeros 18 meses de vida. Anal de Pediatr. 2020;93(6):358–66. DOI: https://doi.org/10.1016/j.anpedi.2020.02.015
Giagnuolo G, Buffardi S, Rossi F, Petruzziello F, Tortora C, Buffardi I et al. Single center experience on efficacy and safety of Aprepitant for preventing chemotherapy-induced nausea and vomiting (CINV) in pediatric Hodgkin Lymphoma. Benjamin RS, editor. PLOS ONE. 2019;12;14(4). DOI: 10.1371/journal.pone.0215295. eCollection 2019.
Guimarães LA, Almeida KC de, Amâncio NFG. Os efeitos da música como terapia complementar na rotina de crianças sob tratamento oncológico. Brazilian Journal of Health Review. 2021;4(2):4964–80. DOI: https://doi.org/10.34119/bjhrv4n2-078
Mota ÍBB, Medrado AP. Percepção de pacientes oncológicos infanto-juvenis, profissionais de saúde e familiares sobre o adoecimento - revisão sistemática. J. Public Health Dent. 2020 Jun 2;11(1):33–43. DOI: 10.17267/2596-3368dentistry.v11v1.2806.
Renesto HMF, De Santana JB, Bushatsky M, Barros MBSC, De Morais VLL. Fique Atento Pode ser Câncer Infantojuvenil. 1a. Ed. Belo Horizonte: Poisson; 2020.
Neugebauer C, Mastergeorge AM. The family stress model in the context of pediatric cancer: A systematic review. J Child Fam Stud. 2021; 30, 1099-1122. DOI: https://doi.org/10.1007/s10826-021-01928-0
Ministério da Saúde. Instituto Nacional de Câncer José Alencar Gomes da Silva (INCA). Câncer infantojuvenil. [Internet]. 2021 [Citado Out 22]. Disponível em: https://www.inca.gov.br/tipos-de-cancer/cancer-infantojuvenil.
Paula DPS, Silva GRC, Andrade JMO, Paraiso AF. Câncer infantojuvenil do âmbito familiar: percepções e experiências frente ao diagnóstico. Cuid Arte enferm. 2019; 10(1): 1-12. DOI: https://doi.org/10.15649/cuidarte.v10i1.570
Young K, Bowers A, Bradford N. Families’ experiences of child and adolescent brain tumor: a systematic review and synthesis of qualitative research. Psycho-Oncol. 2021; 30(10), 1643-1662. Doi:10.1002/pon.5745
Roser K, Erdmann F, Michel G, Winther JF, Mader L. The impact of childhood cancer on parents’ socio‐economic situation—A systematic review. Psycho-Oncol. 2019; 28(6):1207–26. DOI: https://onlinelibrary.wiley.com/doi/10.1002/pon.5088
Santos BD, Maques-Carmago AR, Pan R, Reis SMG, Andrade RC, Neris RR et al. Family knowledge about the legal rights of children and adolescents with cancer. Rev Bras Enferm. 2021;74(6):e20200725. DOI: https://doi.org/10.1590/0034-7167-2020-0725
Liu Q, Petrini MA, Luo D, Yang BX, Yang J, Haase JE Parents’ experiences of having a young child with acute lymphoblastic leukemia in China. J Pediatr Oncol Nurs. 2021; 38(2): 94-104. DOI: 10.1177/1043454220975463
Keikhaei B, Bahadoram M, Keikha A, Bahadoram S, Hassanzadeh S, Mahmoudian-Sani MR. Late side effects of cancer treatment in childhood cancer survivors. J Oncol Pharm Pract. 2023;29(4):885-892. DOI: 10.1177/10781552221087611.
Siqueira HCH, Bick MA, Sampaio AD, Medeiros AC, Bento AS, Severo DF. Repercussões do câncer infantil no ambiente familiar. Rev. min. enferm. 2019; 8(1): 20-29. Disponível em: https://www.periodicos.unimontes.br/index.php/renome/article/view/2250/2318.
Turcotte LM, Liu Q, Yasui Y, Henderson TO, Gibson TM, Leisenring W et al. Chemotherapy and Risk of Subsequent Malignant Neoplasms in the Childhood Cancer Survivor Study Cohort. J Clin Oncol. 2019; 37(34):3310-3319. DOI: 10.1200/JCO.19.00129.
Hughes K, Tarrant A. Qualitative Secondary Analysis. Sage, London. 2019.
Chatfield SL. Recommendations for secondary analysis of qualitative data. Qual. Rep. 2020; 25(3): 833-842. DOI: 10.46743/2160-3715/2020.4092
Vila-Henninger L, Dupuy C, Van Ingelgom V, Caprioli M, Teuber F, Pennetreau, D et al. (2022). Abductive coding: theory building and qualitative (re) analysis. Sociol Methods Res. 2022 DOI: https://doi.org/10.1177/00491241211067508
Souza VRDS, Marziale MHP, Silva GTR, Nascimento PL. Tradução e validação para a língua portuguesa e avaliação do guia COREQ. Acta Paul Enferm. 2021; 34: eAPE02631. DOI: http://dx.doi.org/10.37689/actaape/2021AO02631
Silva-Rodrigues FM, Lucca M, Leite ACAB, Alvarenga WA, Nunes MDR, Nascimento LC. Gerenciamento dos sintomas relacionados à quimioterapia em crianças e adolescentes: perspectivas de cuidadores familiares. Rev Esc Enferm USP. 2021; 55: e20200484. DOI: https://doi.org/10.1590/1980-220X-REEUSP-2021-0484
Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Soc Sci Med. 2022; 292:114523. DOI: 10.1016/j.socscimed.2021.114523.
Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008; 62(1): 107-115. DOI: 10.1111/j.1365-2648.2007.04569.x
Kuckartz U, Rädiker S. Analyzing Qualitative Data with MAXQDA [Internet]. Cham: Springer International Publishing. 2019. DOI: http://link.springer.com/10.1007/978-3-030-15671-8.
Bernier Carney KM, Stegenga K, Linder LA. Informing parents as caregivers with a symptom assessment app developed for children with cancer. J Pediatr Hematol Oncol Nurs. 2022; 39(4):264-272. DOI: 10.1177/27527530211073307
Silva-Rodrigues FM, Vulczak VL da S, Alencar CF, Santos LSC, Nascimento LC. Concepções dos pais acerca da doença oncológica e do tratamento quimioterápico de seus filhos. Rev Enferm UFSM. 2020;10:e33. DOI:
https://doi.org/10.5902/2179769235898
Lewandowska A. Influence of a child's cancer on the functioning of their family. Children (Basel). 2021; 8(7):592. DOI: 10.3390/children8070592.
Carrillo MIO, Valdez LC, Gutiérrez MLE. Perfil psicosocial del cuidador primario informal del paciente oncohematológico: un estudio piloto. Rev Elec Psic Izt. 2020; 23(3); 895-911. Disponível em: https://www.medigraphic.com/pdfs/epsicologia/epi-2020/epi203b.pdf.
Menezes LFM, Amador DD, Marchetti MA, Soldera AGS, Mandetta MA, Marques FRB. Estratégias de enfrentamento utilizadas por crianças com câncer em tratamento quimioterápico. Cienc Cuid Saude. 2023; 22: e66116. DOI: https:// 10.4025/ciencuidsaude.v22i0.66116.
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