Perception of Quality of Life in Families with Pediatric Patients with Neurogenic Bladder

Authors

DOI:

https://doi.org/10.17533/udea.iatreia.246

Keywords:

Child, Intermittent Urethral Catheterization, Quality of Life, Urinary Diversion, Urinary Bladder, Neurogenic

Abstract

Introduction: Quality of life (QoL) is a dynamic process largely dependent on an individual's expectations, experiences, and social interactions. In pe-diatric patients with Neurogenic Bladder (NB), a chronic condition, their QoL is profoundly affected, and this impact extends to their families who often assume the role of primary caregivers.
Objective: This study aims to explore the perception of families with pe-diatric patients diagnosed with NB regarding their QoL.
Methods: Descriptive, cross-sectional, quantitative study. Data were collec-ted from clinical records and through the administration of the WHOQoL-BREF questionnaire. Descriptive statistical techniques were employed using SPSS® 22. Results were presented in terms of frequency, percentage, and mean with a 95% confidence interval.
Results: Among the 54 families with NB patients, 68.5% had neural tube defects (myelomeningocele) as the primary etiology. 57.4% of the patients had received non-surgical treatment; 96.3% were affiliated with the subsi-dized healthcare system, and 18.5% of the families had a caregiver from the Colombian Family Welfare Institute (ICBF). A total of 22 family QoL ques-tionnaires were completed. 68.2% rated their QoL as moderate, and 54.5% reported feeling moderately satisfied with their health. The psychological domain was the highest rated, while the environment domain scored the lowest.
Conclusions: Having a pediatric patient with a chronic disease, especially NB, negatively impacts family QoL. This effect is primarily due to the con-sequences and sequelae affecting the life dynamics of all family members, including economic implications and the time commitment required for care.
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Author Biographies

César Augusto Rincón-Torres, Hospital Infantil Los Angeles, Pasto, Colombia

Pediatric Surgery and Urology Specialist Physician, Hospital Infantil Los Angeles, Pasto, Colombia.

Wilson Giovanni Jiménez-Barbosa, Universidad Jorge Tadeo Lozano, Bogotá, Colombia

Full Professor, Universidad Jorge Tadeo Lozano, Bogotá, Colombia.

References

(1) Post M. Definitions of quality of life: what has happened and how to move on. Top Spinal Cord Inj Rehabil [Internet]. 2014;20(3):167–80. https://doi.org/10.1310/sci2003-167

(2) Souza-Minayo MC, Araujo-Hartz Z, Buss PM, Qualidade de vida e saúde: um debate necessário. Ciênc Saúde Colet [Internet]. 2000;5(1):7–18. https://doi.org/10.1590/S1413-81232000000100002

(3) Gearhart JP, Rink RC, Garrett RA, Mouriquand PDE. Pediatric Urology [Internet]. Elsevier Inc. https://doi.org/10.1016/B978-1-4160-3204-5.X0001-1

(4) Galvis-López CR, Aponte-Garzón LH, Pinzón-Rocha ML. Percepción de la calidad de vida de cuidadores de pacientes asistentes a un programa de crónicos, Villavicencio, Colombia. Aquichan [Internet]. 2016;16(1):104-115. https://doi.org/10.5294/aqui.2016.16.1.11

(5) Welk B. Quality of Life in Neurourology Patients. Eur Urol Focus [Internet]. 2020;6(3):531–3. https://doi.org/10.1016/j.euf.2019.09.001

(6) Okurowska-Zawada B, Kułak W, Otapowicz D, Sienkiewicz D, Paszko-Patej G, Wojtkowski J. Quality of life in children and adolescents with cerebral palsy and myelomeningocele. Pediat Neurol [Internet]. 2011;45(3):163–8. https://doi.org/10.1016/j.pediatrneurol.2011.04.006

(7) Organización Mundial de la salud. Foro Mundial de la Salud. [Internet]. Washington: Grupo de la OMS sobre la calidad de vida;1996 [consultado 2022 Ene 21]. Disponible en: https://www.who.int/publications/i/item/WHO-HIS-HSI-Rev.2012.03

(8) Gómez L, García HI, Gómez C. Calidad de vida y calidad de vida relacionada con la atención en salud. Iatreia [Internet]. 2002 [consultado Feb 2022 27];15(2):96–102. https://doi.org/10.17533/udea.iatreia.3950

(9) Vélez CM, García-García HI. Medición de la calidad de vida en niños. Iatreia [Internet]. [consultado 2022 Abr 25];25(3):240-9. https://doi.org/10.17533/udea.iatreia.12412

(10) Docimo J, ed. The Kelalis – King – Belman Textbook of Clinical Pediatric Urology [Internet]. 5th ed. Philadelphia: CRC Press; 2007. https://doi.org/10.1201/b13795

(11) World Health Organization. WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment : field trial version [Internet]. Washington: WHO Division of Mental Health; 1996 Available From: https://www.who.int/publications/i/item/WHOQOL-BREF

(12) García-Calvente MM, Mateo-Rodríguez I, Maroto-Navarro G. El impacto de cuidar en la salud y la calidad de vida de las mujeres. Gac Sanit [Internet]. 2004 [Consultado 2014 abr 20];18(5):83-92. Disponible en: https://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S0213-91112004000500011

(13) DeWitt-Foy ME, Elliott SP. Neurogenic Bladder: Assessment and Operative Management. Urol Clin North Am [Internet]. 2022 [Consultado Ago 2023 2]: Aug;49(3):519-532. https://doi.org/10.1016/j.ucl.2022.04.010

(14) Catalán-Edo MP, Garrote-Mata AI. Revisión de los cuidados informales. Descubriendo al cuidador principal. Nure Inv [Internet]. 2012 [Consultado 2022 Feb 4];9(57). Disponible en: https://www.nureinvestigacion.es/OJS/index.php/nure/article/view/571

(15) Achury DM, Castaño-Riaño HM, Gómez-Rubiano LA, Guevara-Rodríguez NM. Calidad de vida de los cuidadores de pacientes con enfermedades crónicas con parcial dependencia. Invest Enfer: Imag Desarr [Internet]. 2011 [Consultado 2022 Abr 14];13(1):27-46. Disponible en: http://www.redalyc.org/articulo.oa?id=145221282007

(16) López-Gil MJ, Orueta-Sánchez R, Gómez-Caro S, Sánchez-Oropesa A, Carmona-Morena J, Alonso-Moreno FJ. El rol de cuidador de personas dependientes y sus repercusiones sobre su calidad de vida y su salud. Rev Clin Med Fam [Internet]. 2009 [Consultado 2013 Jul 14];2(7):332-39. https://doi.org/10.4321/S1699-695X2009000200004

(17) Álvarez-Rodríguez BE. Comparación de la calidad de vida de cuidadores familiares de personas que viven con VIH/Sida y reciben terapia antirretroviral con la calidad de vida de cuidadores familiares de personas que viven con VIH/Sida y no reciben terapia antirretroviral de Honduras. Av Enferm [Internet]. 2004 [Consultado 2013 Jun 26] 22(2):6-18. Disponible en: https://repositorio.unal.edu.co/handle/unal/72327

(18) Palma-Zamora I, Atierno H. Understanding the Economic Impact of Neurogenic Lower Urinary Tract Dysfunction. Urol Clin N Am [Internet]. 2017;44(3):333–43. https://doi.org/10.1016/j.ucl.2017.04.001

(19) Fumincelli L, Mazzo A, Amado-Martins J, Dias-Henriques F, Orlandin L. Calidad de vida de pacientes usuarios de cateterismo vesical intermitente. Rev Latino-Am Enfermagem [Internet. 2017;25:29–36. https://doi.org/10.1590/1518-8345.1816.2906

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Published

2024-01-31

How to Cite

1.
Rincón-Torres CA, Jiménez-Barbosa WG. Perception of Quality of Life in Families with Pediatric Patients with Neurogenic Bladder. Iatreia [Internet]. 2024 Jan. 31 [cited 2025 Feb. 23];37(3). Available from: https://revistas.udea.edu.co/index.php/iatreia/article/view/349491

Issue

Vol. 37 No. 3 (2024)

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Original research

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