QUALITY OF LIFE AND CHALLENGES OF FAMILY MEMBERS OF CHILDREN WITH MENINGOMYELOCELE

ABSTRACT

Objective:

To identify the main challenges of the family of a child with meningomyelocele (MMC) and correlate the Zarit Burden Interview (ZBI) scale with the World Health Organization Quality of Life-BREF (WHOQOL - BREF).

Methods:

Questionnaires were sent through an online platform to groups of parents and caregivers of children with MMC. Four WHOQOL-BREF domains were evaluated: physical, psychological, social and environmental.

Results:

All correlations among the domains of the WHOQOL-BREF questionnaire with the Zarit Burden Interview (ZBI) scale were negative and significant with a higher magnitude value for ZBI × psychological domain with − 57.4% correlation (p < 0.001).

Conclusion:

The results of this study suggest the quality of life of mothers and caregivers of children with meningomyelocele is affected regarding functional capacity, emotional aspect, and mental health. Despite this, the participants present a positive view of their lives. The most common difficulties faced by caregivers were: performing bladder catheterization, providing general care, financial burden, and accessibility. Level of Evidence V, Expert opinion.

Keywords:
Meningomyelocele; Neural Tube; Caregivers; Quality of Life