Resumen
Marco contextual: la diabetes mellitus tipo 1 es una enfermedad crónica que afecta principalmente a niños y jóvenes. En su tratamiento la terapia con insulina es esencial. La insulina se puede administrar mediante inyecciones diarias múltiples (MID) o mediante el sistema de infusión continua de insulina subcutánea (ICIS). Este último tiene ventajas, pero el proceso de adaptación es exigente. Objetivo: conocer la percepción de las madres respecto al sistema ICIS en el tratamiento de la DM1 de adolescentes. Metodología: estudio cualitativo descriptivo y exploratorio. La recolección de datos se realizó mediante entrevista semiestructurada con 10 madres de adolescentes con DM1 que se sometieron a tratamiento con ICIS. Su análisis se realizó mediante el método de análisis de contenido de Bardin. Resultados: del análisis de las entrevistas surgieron cuatro categorías: La transición al ICIS, Bienestar del adolescente y la familia, Autonomía del adolescente y Limitaciones del dispositivo y respectivas subcategorías que exponen la percepción de las madres de adolescentes con DM1 sobre el tratamiento con ICIS. Conclusión: el tratamiento con ICIS proporciona una mejor calidad de vida a los adolescentes y sus familias y favorece la autonomía de los adolescentes. El proceso de adaptación plantea desafíos y el apoyo de los profesionales de la salud es fundamental. Se identifican algunas limitaciones en el dispositivo que se desea superar dada la innovación tecnológica actual.
Citas
Alvarenga, C.S., La Banca, R.O., Neris, R.R., de Cássia Sparapani, V., Fuentealba-Torres, M., Cartagena-Ramos, … & Nascimento, L.C. (2022). Use of continuous subcutaneous insulin infusion in children and adolescents with type 1 diabetes mellitus: a systematic mapping review. BMC Endocrine Disorders, 22(1), 43. https://doi.org/10.1186/s12902-022-00950-7
Alsaleh, F.M., Smith, F.J., & Taylor, K.M. (2012). Experiences of children/young people and their parents, using insulin pump therapy for the management of type 1 diabetes: qualitative review. Journal of clinical pharmacy and therapeutics, 37(2), 140-147. doi: 10.1111/j.1365-2710.2011.01283
Alsaleh, F.M., Smith, F.J., Thompson, R. & Taylor, K.M. (2013). A structured educational insulin pump therapy programme: the views of children/young people and their parents. European Diabetes Nursing, 10, 25-30. https://doi.org/10.1002/edn.220
Alsaleh, F.M., Smith, F.J., Thompson, R., Al-Saleh, M.A., & Taylor, K.M. (2014). Insulin pump therapy: impact on the lives of children/young people with diabetes mellitus and their parents. International Journal of Clinical Pharmacy, 36(5), 1023–1030. https://doi.org/10.1007/s11096-014-9990-1
Blair, J.C., McKay, A., Ridyard, C., Thornborough, K., Bedson, E., Peak, M., ... & Gamble, C. (2019). Continuous subcutaneous insulin infusion versus multiple daily injection regimens in children and young people at diagnosis of type 1 diabetes: pragmatic randomised controlled trial and economic evaluation. BMJ, 365. https://doi.org/10.1136/bmj.l1226
Bardin, L. (2009). Análise de conteúdo. Edições 70
Florêncio, A., & Cerqueira, M., (2021). A família da criança com doença crónica no domicílio: emoções no cuidar. Revista de Investigação & Inovação em Saúde, 4(2). https://doi.org/10.37914/riis.v4i2.109
Fureman, A.L., Lilja, M., Lind, T., Särnblad, S., Bladh, M., & Samuelsson, U. (2021). Comparing Continuous
Subcutaneous Insulin Infusion and Multiple Daily Injections in children with type 1 diabetes in Sweden from 2011 to 2016–a longitudinal study from the Swedish National Quality Register (SWEDIABKIDS). Pediatric Diabetes. https://doi.org/10.1111/pedi.13217
Gajewska, K.A., Biesma, R., Bennett, K., & Sreenan, S. (2020). Barriers and facilitators to accessing insulin pump therapy by adults with type 1 diabetes mellitus: a qualitative study. Acta Diabetologica, 58(1), 93-105. doi:10.1007/s00592-020-01595-5
Iversen, A.S., Graue, M., Haugstvedt, A., & Råheim, 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), 1487758. https://doi.org/10.1080/17482631.2018.1487758
Katsarou, A., Gudbjörnsdottir, S., Rawshani, A., Dabelea, D., Bonifacio, E., Anderson, B.J., … Lernmark, Å. (2017). Type 1 diabetes mellitus. Nature Reviews Disease Primers, 3, 17016. https://doi.org/10.1038/nrdp.2017.16
Mueller-Godeffroy, E., Vonthein, R., Ludwig-Seibold, C., Heidtmann, B., Boettcher, C., Kramer, M., . . . Therapy, P. (2018). Psychosocial benefits of insulin pump therapy in children with diabetes type 1 and their families: The pumpkin multicenter randomized controlled trial. Pediatric Diabetes, 19(8), 1471-1480. doi:10.1111/pedi.12777
Nadella, S., Indyk, J.A., & Kamboj, M.K. (2017). Management of diabetes mellitus in children and adolescents: engaging in physical activity. Translational pediatrics, 6(3), 215. doi:10.21037/tp.2017.05.01
Patterson, C.C., Karuranga, S., Salpea, P., Saeedi, P., Dahlquist, G., Soltesz, G., & Ogle, G.D. (2019). Worldwide estimates of incidence, prevalence and mortality of type 1 diabetes in children and adolescents: Results from the International Diabetes Federation Diabetes Atlas, 9th edition. Diabetes Research and Clinical Practice, 157. doi:10.1016/j.diabres.2019.107842
Rankin, D., Harden, J., Noyes, K., Waugh, N., Barnard, K., & Lawton, J. (2015). Parents' experiences of managing their child's diabetes using an insulin pump: a qualitative study. Diabetic Medicine: a Journal of the British Diabetic Association, 32(5), 627–634. https://doi.org/10.1111/dme.12683
Rankin, D., Kimbell, B., Hovorka, R., & Lawton, J. (2021). Adolescents' and their parents' experiences of using a closed-loop system to manage type 1 diabetes in everyday life: qualitative study. Chronic illness, 1742395320985924. Advance online publication. https://doi.org/10.1177/1742395320985924
Reidy, C., Bracher, M., Foster, C., Vassilev, I., & Rogers, A. (2018). The process of incorporating insulin pumps into the everyday lives of people with Type 1 diabetes: A critical interpretive synthesis. Health Expectations, 21(4), 714-729. https://doi.org/10.1111/hex.12666
Shee, A., Prior, S., Reeves, N., Smith, M., & Luccisano, S. (2019). Parental satisfaction on multiple daily injections, insulin pump and flexible multiple daily injections used for children with Type 1 diabetes mellitus. American Journal of Pediatrics, 5(2), 43-50. https://doi.org/10.1016/j.jcjd.2020.08.101
Sociedade Portuguesa de Diabetologia (2016). Diabetes: factos e números - O ano de 2015 - Relatório anual do Observatório Nacional da Diabetes. Lisboa. https://www.sns.gov.pt/wp-content/uploads/2017/03/OND-2017_Anexo2.pdf
Rego, A., Pina, M., & Meyer Jr, V. (2018). Quantos participantes são necessários para um estudo qualitativo? Linhas práticas de orientação. Revista de Gestão dos Países de Língua Portuguesa, 17(2), 43-57.
Ribeiro, L. (2010). Investigação e Avaliação em Psicologia e Saúde (2ª ed). Placebo
Rosner, B., & Roman-Urrestarazu, A. (2019). Health-related quality of life in paediatric patients with Type 1 diabetes mellitus using insulin infusion systems. A systematic review and meta-analysis. PLoS One, 14(6), e0217655. doi:10.1371/journal.pone.0217655
Trandafir, L.M., Moisa, S.M., Vlaiculescu, M.V., Butnariu, L.I., Boca, L.O., Constantin, M.M.L., ... & Burlacu, A. (2022). Insulin Pump Therapy Efficacy and Key Factors Influencing Adherence in Pediatric Population—A Narrative Review. Medicina, 58(11), 1671. https://doi.org/10.3390/medicina58111671
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