What to tell the family? Predisposition for hereditary childhood cancer
DOI:
https://doi.org/10.33448/rsd-v9i11.10056Keywords:
Medical oncology; Pediatrics; Family; Communication; Nursing; Genetic counseling.Abstract
Objective: Identify the knowledge of family members about childhood disease with a hereditary predisposition to cancer and analyze how information about the disease is disseminated in the intrafamily scenario. Methodology: Qualitative, exploratory research. Data collection was carried out with 16 family members of children enrolled in the genetic counseling clinic, through individual, semi-structured interviews with thematic analysis. Results: The lack of knowledge about the disease with a hereditary predisposition was present in the family members' discourse. Some communication strategies developed by family members for the child and distant family members were identified. The information obtained in genetic counseling influenced the identification of family members of hereditary risk and care with future generations. Conclusions and implications for the practice: Communication was present in the family environment with the child and family members facing the disease with a hereditary predisposition to cancer. Health professionals need to be trained in the field of genetic oncology to contribute to the identification of affected children and families. The information acquired at the genetic counseling clinic contributes to the tracking of family cases, dissemination of information and the quality of life of those affected.
References
Abacan, M., Alsubaie, L., Barlow-Stewart, K. et al. (2019) The Global State of the Genetic Counseling Profession. Eur J Hum Genet.;27(2):183-197. Recuperado de: https://doi.org/10.1038/s41431-018-0252-x.
Afonso, S. B. C., Minayo, M. C. S. (2013) Notícias difíceis e o posicionamento dos oncopediatras: revisão bibliográfica. Ciência & Saúde Coletiva; 18(9):2747-2756. Recuperado de: https://doi.org/10.1590/S1413-81232013000900030.
Andrade, D. O. et al. (2015). Clinical, Epidemiologic, and endoscopic profile in children and adolescents with colonic polyps in two reference centers. Arquivos de Gastroenterologia, 52(4), 303-310. Recuperado de: https://doi.org/10.1590/S0004-28032015000400010.
Bai, J., Swanson, K. M., Harper, F. W. K., Santacroce, S. J., Penner, L. A. (2018). Longitudinal Analysis of Parent Communication Behaviors and Child Distress during Cancer Port Start Procedures. Pain Manag Nurs.; 19(5):487-496. Recuperado de: https://doi.org/10.1016/j.pmn.2018.01.002.
Benjamin, D. (2018). Is there a “right time” for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk, Social Sci & Medic;202: 13-19. Recuperado de: https://doi.org/10.1016/j.socscimed.2018.02.022.
Borges, A. A., Lima, R. A. G., Dupas, G. (2016). Secrets and truths in the process of family communication with a child with cancer. Escola Anna Nery, 20(4), e20160101. Recuperado de: https://dx.doi.org/10.5935/1414-8145.20160101.
Brasil. (2015). IBGE, Diretoria de Pesquisas, Coordenação de Trabalho e Rendimento, Pesquisa Nacional por Amostra de Domicílios 2007/2015. Recuperado de: https://brasilemsintese.ibge.gov.br/educacao/anos-de-estudo.html.
Brasil. (2016). Incidência, mortalidade e morbidade hospitalar por câncer em crianças, adolescentes e adultos jovens no Brasil: informações dos registros de câncer e do sistema de mortalidade / Instituto Nacional de Câncer José Alencar Gomes da Silva. – Rio de Janeiro: Inca.
Bruwer, Z., Futter, M., Ramesar, R. (2013). Communicating cancer risk within an African context: experiences, disclosure patterns and uptake rates following genetic testing for Lynch syndrome. Patient Educ Couns.; 92(1):53‐60. Recuperado de: https://doi.org/10.1016/j.pec.2013.02.001.
Dalfovo, M. S., Lana, R. A., Silveira, A. (2008). Métodos quantitativos e qualitativos: um resgate teórico. Revista Interdisciplinar Científica Aplicada, Blumenau; 2(4):01-13, Sem II. ISSN 1980-7031.
Delaney, S. K., Hultner, M. L., Jacob, H. J. et al. (2016). Toward clinical genomics in everyday medicine: perspectives and recommendations. Expert Rev Mol Diagn.; 16:521–532. Recuperado de: https://doi.org/10.1586/14737159.2016.1146593.
Derbez, B., de Pauw, A., Stoppa-Lyonnet, D., de Montgolfier, S. (2017). Supporting disclosure of genetic information to family members: professional practice and timelines in cancer genetics. Fam Cancer.;16(3):447-457. Recuperado de: https://doi.org/10.1007/s10689-017-9970-4.
Elsen, I., Althoff, C. R., Manfrini, G. C. (2001). Saúde da Família: Desafios Teóricos. Fam. Saúde Desenv., Curitiba, v.3, n.2, p.89-97.
Flória-Santos, M. et al. (2013). Atuação do enfermeiro em oncologia na perspectiva da genética e genômica. Texto & Contexto - Enfermagem, 22(2), 526-533. Recuperado de: https://dx.doi.org/10.1590/S0104-07072013000200031.
Franciscatto, L. H. G., Silva, M. R. S., Santos, A. M., Oliveira, A. M. N., Salvador, K. (2020). Genetic disease in the family: trajectories and experiences in public health services. Escola Anna Nery, 24(1), e20190128. Recuperado de: https://dx.doi.org/10.1590/2177-9465-ean-2019-0128.
Gallo, A. M., Knafl, K. A., Angst, D. B. (2009). Information management in families who have a child with a genetic condition. Journal of Pediatric Nursing.;24(3):194-204. Recuperado de: https://doi.org/10.1016/j.pedn.2008.07.010.
Gedleh, A., Lee, S., Hill, J.A., Umukunda, Y., Qaiser, S., Kabiru, J. et al. (2017). “Where Does it Come from?” Experiences among survivors and parents of children with retinoblastoma in Kenya. J Genet Couns. Recuperado de: https://doi.org/10.1007/s10897-017-0174-8.
Hall, M. J., Forman, A. D., Montgomery, S. V., Rainey, K. L., Daly, M. B. (2015) Understanding patient and provider perceptions and expectations of genomic medicine. J Surg Oncol.; 111(1):9-17. Recuperado de: https://doi.org/10.1002/jso.23712.
Heimgärtner, M., Granström, S., Haas-Lude, K., Leark, R. A., Mautner, V. F., Lidzba, K. (2019). Attention Deficit Predicts Intellectual Functioning in Children with Neurofibromatosis Type 1. Int J Pediatr.;2019:9493837. Recuperado de:https://doi.org/10.1155/2019/9493837.
Himes, D. O., Davis, S. H., Lassetter, J. H., Peterson, N. E., Clayton, M. F., Birmingham, W. C., Kinney, A.Y. (2019). Does family communication matter? Exploring knowledge of breast cancer genetics in cancer families. J Community Genet.; 10(4):481-487. Recuperado de: https://doi.org/10.1007/s12687-019-00413-y.
Lopes-Júnior, L. C., Flória-Santos, M., Ferraz, V. E. F., Villa, T. C. S., Palha, P. F., Bomfim, E. O. et al. (2014). Practicability of comprehensive care in clinical genetics in the brazilian unified health system: expanding the debate. Texto & Contexto - Enfermagem, 23(4), 1130-1135. Recuperado de: https://dx.doi.org/10.1590/0104-07072014002120012.
Mendes, A., Metcalfe, A., Paneque, M., Sousa, L., Clarke, A.J, Sequeiros, J. (2018). Communication of Information about Genetic Risks: Putting Families at the Center. Fam. Proc., 57 (3): 836-846. Recuperado de: https://doi.org/10.1111/famp.12306.
Minayo, M. C. S. (2014). O desafio do conhecimento: pesquisa qualitativa em saúde. 14 a ed. São Paulo-Rio de Janeiro (RJ): Hucitec.
Nóia, T. C., Sant'Ana, R. S. E., Santos, A. D. S., Oliveira, S. C., Bastos Veras, S. M. C., Lopes-Júnior L. C. (2015). Coping with the diagnosis and hospitalization of a child with childhood cancer. Investigación Y Educación En Enfermería, 33(3). Recuperado de: https://revistas.udea.edu.co/index.php/iee/article/view/24455.
Petean, E. B. L., & Pina Neto, J. M. de. (1998). Investigações em aconselhamento genético: impacto da primeira notícia - a reação dos pais à deficiência. Medicina (Ribeirão Preto), 31(2), 288-295. Recuperado de: https://doi.org/10.11606/issn.2176-7262.v31i2p288-295.
Pina-Neto, J. M. (2008). Genetic counseling. Jornal de Pediatria, 84(4, Suppl. ), S20-S26. Recuperado de: https://dx.doi.org/10.1590/S0021-75572008000500004.
Pinto, M., Madureira, A., Barros, L. B. P., Nascimento, M. et al. (2019). Cuidado complexo, custo elevado e perda de renda: o que não é raro para as famílias de crianças e adolescentes com condições de saúde raras. Cadernos de Saúde Pública, 35(9), e00180218. Recuperado de: https://doi.org/10.1590/0102-311x00180218.
Santos de Paula, D. P., Carvalho da Silva, G. R., Oliveira Andrade, J. M., & Fernandes Paraíso, A. (2018). Câncer infantojuvenil do âmbito familiar: percepções e experiências frente ao diagnóstico.Revista Cuidarte, 10(1). Recuperado de: https://doi.org/10.15649/cuidarte.v10i1.570.
Shofty, B., Constantini, S., Ben-Shachar, S. (2015). Advances in Molecular Diagnosis of Neurofibromatosis Type 1. Semin Pediatr Neurol.; 22(4): 234-9. Recuperado de: https://doi.org/10.1016/j.spen.2015.10.007.
Silva Queiroz, C.L., Farias Hassam, S., Varela Câncio, A., Gonçalves de Farias, J., Andrade Cardoso, J. (2020). Diagnóstico precoce e tratamento da síndrome de Gorlin Goltz: acompanhamento de oito anos. Rev Cubana Estomatol.;57(1):e1942.
Sullcahuaman Allende, Y. C., Loarte Villarreal, M., Torres Loarte, M. (2018). Cáncer ginecológico hereditario en la era de la medicina genómica. Revista Peruana de Ginecología y Obstetricia, [S.l.], v. 64, n. 3, p. 461-468. ISSN 2304-5132. Recuperado de: https://doi.org/10.31403/rpgo.v64i2112.
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): 349-57. Recuperado de: https://doi.org/10.1093/intqhc/mzm042.
Trindade, L., Bordignon, M., Ferraz, L., Amestoy, S. (2015). Professional satisfaction and quality of care in oncology: the vision of health professionals. Rev Pesq Cuid fundam.; 7(2):2383. Recuperado de: http://dx.doi.org/10.9789/2175-5361.2015.v7i2.2383-2392.
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