Characterization of the family experience of children and adolescents with Diabetes mellitus type 1: a narrative review
DOI:
https://doi.org/10.33448/rsd-v11i2.25313Keywords:
Diabetes mellitus type 1; Child; Family; Adolescent; Quality of life.Abstract
Diabetes Mellitus (DM) is a chronic health condition characterized by hyperglycemia resulting from the impossibility of production or deficiency in the secretion or action of insulin. Type 1 DM is the most frequent in children and adolescents. This study aims to investigate characteristics of family life after the diagnosis of type 1 diabetes mellitus in children and adolescents and the possible difficulties encountered after this period. This is a narrative review, with a search for papers in the Latin American and Caribbean Literature in Health Sciences (Lilacs), Pubmed/Medline, Scientific Electronic Library Online (Scielo) and Cochrane databases with studies published in the last 20 years. It is evidenced by the studies that the discovery of the disease impacts the routine and changes in the family lifestyle, showing as the main difficulties the application of insulin and proposed dietary adaptations, added to feelings such as guilt, fear, anxiety and frustration. In these circumstances, the support of guardians is essential for the acceptance and control of the disease by the child or adolescent. The changes evidenced can cause psychological and emotional changes, as well as in the well-being and in the proper course of the disease, thus suggesting the need for support and guidance focused on improving the quality of life of children and adolescents and their families.
References
Aguiar, G. B., Machado, M. E. D., Silva, L. F., Aguiar, R. C. B. & Christoffel, M. M. (2021). Children with type 1 diabetes mellitus: the experience of disease. Rev Esc Enferm USP, 55, 1-8. https://doi.org/10.1590/S1980-220X2020011803725
Albuhairan, F., Nasim, M., Otaibi, A. A., Shaheen, N. A., Jaser, S. A. & Alwan, I. A. (2016). Health related quality of life and family impact of type 1 diabetes among adolescents in Saudi Arabia. Diabetes Research and clinical practice, 114, 173-179. https://doi.org/10.1016/j.diabres.2016.01.001
Brito, T. B. & Sadala, M. L. A. (2009). Diabetes mellitus juvenil: a experiência de familiares de adolescentes e pré-adolescentes. Ciência & Saúde Coletiva,14(3), 947-960. https://doi.org/10.1590/S1413-81232009000300031
Correia Júnior, P. C. T., Pereira, S. M. P. D., Almeida, V. C. F., Saraiva, A. R. B. & Alencar, A. M. P. G. (2014). Apreender as repercussões do diabetes mellitus em crianças sob a ótica das mães. Rev Rene, 15(1), 60-9. http://periodicos.ufc.br/rene/article/view/3082/pdf
Cruz, D. S. M., Collet, N. & Nóbrega, V. M. (2018). Qualidade de vida relacionada a saúde de adolescentes com dm-1 – revisão integrativa. Ciência & Saúde Coletiva, 23(3), 973-989. https://doi.org/10.1590/1413-81232018233.08002016
Cruz, D. S. M., Collet, N., Andrade, E. M. C., Nóbrega, V. M. & Nóbrega, M. M. L. (2017). Vivências de mães de crianças diabéticas. Esc Anna Nery, 21(1), 1-8. https://doi.org/10.5935/1414-8145.20170002
Dantas, I. R. O., Neris, R. R., Zago, M. M. F., Santos, M. A. & Nascimento, L. C. (2020). Modelos explicativos das famílias de crianças com diabetes mellitus tipo 1. Rev Bras Enferm, 73(4), 1-9. https://doi.org/10.1590/0034-7167-2018-0975
Erickson, K., Freeborn, D., Roper, S. O., Mandleco, B., Anderson, A. & Dyches, T. (2014). Parent Experiences Raising Young People with Type 1 Diabetes and Celiac Disease. Journal of Pediatric Nursing, 30(2), 353–63. https://doi.org/10.1016/j.pedn.2014.09.011
Faulkner, M. S. & Chang, L. (2007). Family Influence on Self-Care, Quality of Life, and Metabolic Control in School-Age Children and Adolescents with Type 1 Diabetes. Journal of Pediatric Nursing, 22(1), 59-68. https://doi.org/10.1016/j.pedn.2006.02.008
Flora, M. C. & Gameiro, M. G. H. (2016). Autocuidado dos adolescentes com Diabetes Mellitus tipo 1: responsabilidade no controle da doença. Rev Enferm Ref, 4(9), 9-19. http://dx.doi.org/10.12707/RIV16010
Fragoso, L. V. C., Cunha, M. C. S. O., Fragoso, E. B. & Araújo, E. B. (2019). Autocuidado em Pessoas com Diabetes Mellitus Tipo 1: Vivências de Adolescentes. Rev Fund Care Online, 11, 289-296. http://dx.doi.org/10.9789/2175-5361.2019.v11i2.289-296
Freitas, S. M., Silva, L. R. da, Santos, S. O. P. D. dos, Sousa, F. S., Feitosa, M. A. & Cavalcante, R. M. S. (2021). Diabetes mellitus tipo 1 infantil e as dificuldades no manejo da doença no seio familiar: uma revisão integrativa. Research, Society and Development,10(7), 1-10. http://dx.doi.org/10.33448/rsd-v10i7.16832
Greco-Soares, J. P. & Dell’aglio, D. D. (2017). Adesão ao tratamento em adolescentes com Diabetes Mellitus tipo 1. Psico, saúde & doenças, 18(2), 322-334. http://dx.doi.org/10.15309/17psd180204
Hapunda, D., Abubakar, A., Vijver, F. V. & Pouwer, F. (2015). Living with type 1 diabetes is challenging for Zambian adolescents: qualitative data on stress, coping with stress and quality of care and life. BMC Endocrine Disorders, 15(20), 1-12. http://dx.doi.org/10.1186/s12902-015-0013-6
Hermes, T. S. V., Viera, C. S., Rodrigues, R. M., Toso, B. R. G. O. & Fonseca, L. M. M. (2018). Criança diabética do tipo 1 e o convívio familiar: repercussões no manejo da doença. Saúde Debate, 42(119), 927-939. https://doi.org/10.1590/0103-1104201811911
International Diabetes Federation. (2019). Diabetes Atlas. Ninth edition. https://www.diabetesatlas.org/upload/resources/material/20200302_133351_IDFATLAS9e-final-web.pdf.
Iversen, A. S., Graue, M., Haugstvedt, A. & Raheim, M. (2018). Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents’ experiences. International journal of qualitative studies on health and well-being, 13(1), 1-9. https://doi.org/10.1080/17482631.2018.1487758
Jaser, S.S., Whittemore, R., Ambrosino, J. M., Lindemann, E. & Gray, M. (2008). Mediators of Depressive Symptoms in Children with Type 1 Diabetes and their Mothers. Pediatr Psychol, 33(5), 509–519. https://doi.org/10.1093/jpepsy/jsm104
Kharroubi, A.T. & Dawish, H.M. (2015). Diabetes mellitus: The epidemic of the century. World J Diabetes, 25(6), 850-867. https://doi.org/10.4239/wjd.v6.i6.850
Leal, D. T., Fialho, F. A., Vargas Dias, I. M. A., Nascimento, L. & Arruda, W. C. (2012). Vivência dos familiares de crianças e adolescentes portadores de diabetes mellitus tipo 1. Rev Eletr Enf, 14(1), 189-96. https://doi.org/10.5216/ree.v14i1.9641
Minanni, C. A., Ferreira, A. B., SAnt’anna, M. J. C. & Coates, V. (2010). Abordagem integral do adolescente com diabetes. Adolescência & Saúde, 7(1), 45-52. https://cdn.publisher.gn1.link/adolescenciaesaude.com/pdf/v7n1a09.pdf
Naranjo, D., Mulvaney, S., McGrath, M., Garnero, T. & Hood, K. (2014). Predictors of Self-Management in Pediatric Type 1 Diabetes: Individual, Family, Systemic, and Technologic Influences. Curr Diab Rep, 14(11), 544. https://doi.org/10.1007/s11892-014-0544-7
Nunes, M. D. & Dupas, G. (2004). Entregando-se à vivência da doença com o filho: a experiência da mãe da criança/adolescente diabético. Texto Contexto Enferm, 13(1), 83-91. https://www.redalyc.org/articulo.oa?id=71413112
Novato, T. S. & Grossi, S. A. A. (2011). Fatores associados à qualidade de vida de jovens com diabetes mellitus do tipo 1. Rev Esc Enferm, 45(3), 770-6. https://doi.org/10.1590/S0080-62342011000300032
Pereira, M. G., Berg-Cross, L., Almeida, P. & Machado, J. C. (2008). Impact of Family Environment and Support on Adherence, Metabolic Control, and Quality of Life in Adolescents with Diabetes. International Journal of Behavioral Medicine, 15(3), 187–193. https://link.springer.com/article/10.1080/10705500802222436
Pérez-Marín, M., Gómez-Rico, I. & Mmontoya-Castilla, I. (2015). Type 1 diabetes mellitus: psychosocial factors and adjustment of the pediatric patient and his/her family. Review. Arch Argent Pediatr, 113(2), 158-162. https://dx.doi.org/10.5546/aap.2015.eng.158
Rostami, S., Parsa-Yekta, Z., Ghezeljeh, T. N. & Vanaki, Z. (2013). Supporting adolescents with type 1 diabetes mellitus: A qualitative study. Nursing and Health Sciences. 16(1), 84-90. https://doi.org/10.1111/nhs.12070
Rother, E. T. (2007). Revisão sistemática x revisão narrativa. Editorial. Acta Paul. Enferm. 20(2), 1-2. https://doi.org/10.1590/S0103-21002007000200001
Schmidt, A. M. (2018). Highlighting diabetes mellitus, the epidemic continues. Department of Medicine, New York University School of Medicine. Thromb Vasc Biol, 38(1), 1-8. https://doi.org/10.1161/ATVBAHA.117.310221
Sociedade Brasileira de Diabetes. (2015-2016). Diretrizes da Sociedade Brasileira de Diabetes 2015-2016. Epidemiologia e prevenção do diabetes mellitus. http://www.epi.uff.br/wp-content/uploads/2013/10/DIRETRIZES-SBD-2015-2016.pdf
Sociedade Brasileira de Diabetes. (2018-2019). Departamento de Epidemiologia, Economia e Saúde Pública. Dados epidemiológicos do diabetes mellitus no Brasil. https://diabetes.org.br/wp-content/uploads/2021/06/SBD-_Dados_Epidemiologicos_do_Diabetes_-_High_Fidelity.pdf
Sociedade Brasileira de Pediatria. (2018). Departamento Cientifico de Endocrinologia. Diabetes Mellitus tipo 1 e qualidade de vida relacionada à saúde. https://www.sbp.com.br/imprensa/detalhe/nid/diabetes-mellitus-tipo-1-e-qualidade-de-vida-relacionada-a-saude/
Souza, R. R., Marquete, V. F., Vieira, V. C. L., Fischer, M. J. B., Spigolon, D. N. & Marcon, S. S. (2020). Cuidado domiciliar à criança e ao adolescente com diabetes mellitus tipo 1 na perspectiva do cuidador. Rev enferm UERJ, Rio de Janeiro, 28, 1-6. http://dx.doi.org/10.12957/reuerj.2020.46013
Sundberg, S., Sand, P. & Forsander, G. (2015). Short Report: Educational and Psychological Issues Health-related quality of life in preschool children with Type 1 diabetes. Diabet Med, 32, 116–119. https://doi.org/10.1111/dme.12557
Whitemore, R., Jaser, S., Guo, J. & Gray, M. (2010). A conceptual model of childhood adaptation to type 1 diabetes. Nurs Outlook, 58(5), 242-251. https://doi.org/10.1016/j.outlook.2010.05.001
Zanetti, M. L. & Mendes, I. A. C. (2001). Análise das dificuldades relacionadas às atividades diárias de crianças e adolescente com diabetes mellitus tipo 1: depoimento de mães. Rev Latino-Am Enferm, 9(6), 25-30. https://doi.org/10.1590/S0104-11692001000600005
Zurita-Cruz, J. N., Nishimura-Meguro, E., Villasís-Keever, M. A., Hernández-Méndez, M. E., Garrido-Magaña, E. & Rivera-Hernández, A. D. (2017). Influence of the informal primary caretaker on glycemic control among prepubertal pediatric patients with type 1 diabetes mellitus. J Pediatr, 93(2), 136-141. https://pubmed.ncbi.nlm.nih.gov/27686588/
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2022 Maristela Meire Conceição Souza; Thaisy Cristina Honorato Santos Alves
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.
