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

Abstract

Introduction: Quality of life (QoL) is a dynamic process fundamentally dependent on an individual's expectations, experiences, and societal interactions. In pediatric patients with neurogenic bladder (NB), a chronic health condition, not only is the patient's QoL affected but also that of their entire family, who often play the role of primary caregivers. Objective: To explore the perception of QoL in families with pediatric patients diagnosed with NB. Methods: This descriptive, cross-sectional, and quantitative study collected data from clinical records and the WHOQoL-BREF questionnaire. Descriptive statistical techniques were employed using SPSS® software version 22. Results were presented in terms of frequency, percentage, and mean with a 95% confidence interval. Results: Among 54 families with NB patients, 68.52% had neural tube defects (myelomeningocele) as the primary etiology. 57.41% of the patients had received non-surgical treatment; 96.3% were enrolled in the subsidized health care system, and 18.52% of the families had a caregiver from the Colombian Institute of Family Welfare (ICBF). Twenty-two questionnaires were administered to analyze the families' QoL. 68.18% rated their QoL as moderate, and 54.5% reported feeling moderately satisfied with their health. The highest-rated domain was psychological, while the lowest was the environment. Conclusions: Having a patient with a chronic disease, especially NB, directly and negatively impacts the family's QoL. This effect is particularly pronounced due to how the disease's consequences and sequelae affect the life dynamics of all family members, and especially due to the economic implications and time consumption involved in their care.

Keywords

• child
• intermittent urethral catheterization
• quality of life
• urinary bladder
• neurogenic
• urinary diversion