Impacto de un programa especializado de rehabilitación en disfagia pediátrica sobre la calidad de vida de los cuidadores y sus estrategias de afrontamiento

Abstract

Introduction

We conducted a prospective quasi-experimental study with the aim of assessing the perceived quality of life (QoL) and burden of caregivers of pediatric patients with dysphagia undergoing a specific assessment and treatment program.

Material and methods

The study included pediatric patients aged less than 14 years with a diagnosis of dysphagia managed in a specialized unit. Patients underwent clinical assessments, including an oral motor assessment and diagnostic tests such as videofluoroscopy. Individualized rehabilitative treatment was initiated, including dietary modifications and rehabilitation approaches. Quality of life was evaluated by means of validated tools, including the Pediatric Quality of Life Inventory-Family Impact Module (PedsQL-FIM) and an adapted version of the Swallowing Quality of Life Questionnaire (SwalQOL).

Results

A total of 117 patients were recruited initially, and the final analysis included 99 patients. We observed significant improvements in dysphagia severity, oral diet expansion and safety outcomes after treatment. Caregivers of patients with greater neurological impairment, particularly those with GMFCS IV-V and using feeding tubes, were more likely to have higher post-intervention PedsQL-FIM scores.

Conclusions

Our findings underscore the significant impact of dysphagia on caregiver QoL and the effectiveness of individualized rehabilitation programs in improving patient outcomes and mitigating caregiver burden. Future research should focus on refining assessment tools and enhancing comprehensive care approaches to further support caregivers and patients in managing dysphagia.