Portrayal of accompanying family members of children and teenagers cared for retinoblastoma in Brazil: A cross-sectional study
DOI:
https://doi.org/10.33448/rsd-v10i5.15096Keywords:
Retinoblastoma; Family; Information; Orientation; Neoplasms.Abstract
Retinoblastoma is the most common intraocular tumor in childhood. It is not yet clear who the accompanying family members of affected children and teenagers are, how they find out about the disease, or how satisfied they are with the guidance provided by healthcare providers. Thus, this study aimed to portray the family members of children and teenagers with retinoblastoma regarding their sociodemographic aspects, the sources of information used by them to learn about the disease, their satisfaction with the guidance received from healthcare providers regarding this form of cancer, and to analyze whether there is an association between these variables. It was a cross-sectional, descriptive-analytical study, via web survey in Brazil, based on social media and analysis by descriptive-inferential statistics. A total of 129 people participated in this study, with an average age of 34.61 years, most of them were mothers, housewives, with eleven years of education, with a family income not exceeding minimum wage, and living mostly in the southeastern region of Brazil. Among the respondents, 65.12% of them stated that they use websites as their main source of information. Regarding the satisfaction with the guidance received from healthcare providers, there were scores above eight, indicating a high level of satisfaction with the instructional activity of physicians and nurses. It is concluded, in addition to the sociodemographic portrayal achieved, that websites emerged as the main source of information on retinoblastoma and that there was high satisfaction regarding the guidance received from healthcare providers. There was an association between family members whose occupation was considered to be that of a housewife and the use of social media as the main source of information regarding retinoblastoma, as well as an association between being self-employed and the satisfaction with the guidance provided by physicians regarding the disease.
References
Amador, D. D., Marcílio, A. C., Soares, J. dos S. S., Marques, F. R. B., Duarte, A. M., & Mandetta, M. A. (2018). The strength of information on retinoblastoma for the family of the child. Acta Paul. Enferm. (Online), 31(1), 87–94.
Assis Brasil, E. S. de, Bencke, E. L., Canevese, F. F., & Romani, F. A. (2018). Retinoblastoma: diagnostic evaluation and treatment update. Acta méd. (Porto Alegre), 39(2), 402–415.
Azevedo Moretti, F., Elias de Oliveira, V., & Koga da Silva, E. M. (2012). Access to health information on the internet: a public health issue? Revista da Associação Médica Brasileira, 58(6), 650–658.
Brédart, A., Razavi, D., Robertson, C., Brignone, S., Fonzo, D., Petit, J.-Y., & de Haes, J. C. J. M. (2002). Timing of patient satisfaction assessment: effect on questionnaire acceptability, completeness of data, reliability and variability of scores. Patient Education and Counseling, 46(2), 131–136.
Camargo, A. de, & Ito, M. (2012). Utilização das Tecnologias de Informação e Comunicação na área da saúde: uso das redes sociais pelos médicos. Journal of Health Informatics, 4(4), 165–169.
Costa, T. F. da, & Ceolim, M. F. (2010). Nursing in palliative care for children and adolescent with cancer. Revista Gaúcha de Enfermagem, 31(4), 776–784.
Dolce, M. C. (2011). The Internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncology Nursing Forum, 38(3), 353–359.
Essuman, V. A., Braimah, I. Z., Ndanu, T. A., & Ntim-Amponsah, C. T. (2018). Presentation of children with advanced retinoblastoma for treatment in Ghana: the caretakers perspectives. West Afr J Med, 35(1), 9–14.
Google. (2019). Google Forms. https://www.google.com/intl/pt-BR/forms/about/
Greysen, S. R., Arora, V. M., & Auerbach, A. D. (2015). Peer-reviewed Publications in the Era of Social Media - JHM 2.0. Bone, 9(4), 269–270.
IBGE. (2018). Synthesis of social index: An analysis of the living standars of the Brazilian population 2018. IBGE.
Kozan, L., Claudia, A., Wanderbroocke, N. S., & Polli, G. M. (2016). Social Support Among Escorts of Children Hospitalized in a Hematopediatrics Unit. 14(1), 53–78.
Mattosinho, C. C. D. S., Moura, A. T. M. S., Oigman, G., Ferman, S. E., & Grigorovski, N. (2019). Time to diagnosis of retinoblastoma in Latin America: A systematic review. Pediatric Hematology and Oncology, 36(2), 55–72.
Mutti, C. F., Cruz, V. G. da, Santos, L. F., Araújo, D. de, Cogo, S. B., & Neves, E. T. (2018). Clinical and Epidemiological Profile of Children and Adolescentes with Cancer in an Oncology Service. Rev. Bras. Cancerol, 64(3), 293-299.
Nicodemo, D., & Ferreira, L. M. (2006). Questionnaire of the psychosocial profile of the patient with anophthalmia with indication of ocular prosthesis. Arq Bras Oftalmol, 69(4), 463–470.
Oliveira, F. de, Goloni-Bertollo, E. M., & Pavarino, É. C. (2013). A Internet como fonte de Informação em Saúde. Journal of Health Informatics, 5(3), 98–102.
Oliveira, V. Z. de, & Gomes, W. B. (2004). Doctor-patient communication and adhesion to treatment in adolescents with chronic organic diseases. Estudos de Psicologia (Natal), 9(3), 459–469.
Pagano, M., & Gauvreau, K. (2004). Princípios de bioestatística. Cengage Learning.
Palazzi, M. A., Abreu, H. F. H. de, Freitas, A. C. L. H. de, Quagliato, L. B., & Freitas, J. A. H. de. (2015). Optical coherence tomography in the evaluation of macular retinoblastoma. Rev. bras. oftalmol, 74(5), 275–278.
Polit, D. F., & Beck, C. T. (2011). Fundamentos de Pesquisa em Enfermagem: Avaliação de Evidências para a Prática da Enfermagem (7o ed). Artmed.
Santos, M. A. dos, Sardinha, A. H. de L., & Santos, L. N. dos. (2017). User satisfaction with the care of nurses. Revista Gaúcha de Enfermagem, 38(1), e57506.
Sirianni, D., Leles, C. R., & Mendonça, E. F. (2013). A 12-year retrospective survey of management of patients with malignant neoplasms in the orbital cavity in a brazilian cancer hospital. The Open Dentistry Journal, 7, 140–145.
Szareski, C., & Lana, L. D. (2009). Profile of Family Companions : Contributions To Nursing Educational Actions. 13(1), 28–33.
Traoré, F., Sylla, F., Togo, B., Kamaté, B., Diabaté, K., Diakité, A. A., Diall, H., Dicko, F., Sylla, M., Bey, P., Desjardins, L., Gagnepain-Lacheteau, A., Coze, C., Harif, M., & Doz, F. (2018). Treatment of retinoblastoma in Sub-Saharan Africa: Experience of the paediatric oncology unit at Gabriel Toure Teaching Hospital and the Institute of African Tropical Ophthalmology, Bamako, Mali. Pediatric Blood & Cancer, 65(8), e27101.
Vermelho, S. C., Velho, A. P. M., Bonkovoski, A., & Pirola, A. (2014). Refletindo sobre as redes sociais digitais. Educacao e Sociedade, 35(126), 179–196.
Xiao, W., Ye, H., Zeng, H., Tang, L., Chen, R., Gao, Y., Mao, Y., & Yang, H. (2019). Associations among Socioeconomic Factors, Lag Time, and High-Risk Histopathologic Features in Eyes Primarily Enucleated for Retinoblastoma. Current Eye Research, 44(10), 1144–1149.
Yuen, E. Y. N., Innovation, P. H., & Health, P. (2015). Development of a conceptual model of cancer caregiver health literacy. European Journal of Cancer Care, 25(2), 294–306.
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2021 Maria Izabel Pereira Messias; Gabriela Silva Bochi; Alicia Natali Ferreira da Silva; Fabiana Lucio de Oliveira; Jessica Luanda Lemos Melo; Namie Okino Sawada; Murilo César do Nascimento
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.
