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.

摘要 研究目的：明确脊髓脊膜膨出（meningomyelocele, MMC）患儿家庭所面临的主要挑战，并将扎莱特负担访谈量表（Zarit Burden Interview, ZBI）与世界卫生组织生活质量简表（World Health Organization Quality of Life-BREF, WHOQOL-BREF）进行相关性分析。研究方法：通过线上平台向脊髓脊膜膨出患儿的家长及照护者群体发放问卷。本研究评估了WHOQOL-BREF的四个维度：生理领域、心理领域、社会关系领域及环境领域。研究结果：WHOQOL-BREF各维度与扎莱特负担访谈量表（ZBI）的相关性均为显著负相关，其中ZBI与心理领域的相关系数最高，为-57.4%（p < 0.001）。研究结论：本研究结果显示，脊髓脊膜膨出患儿的母亲及照护者的生活质量在功能能力、情感状态及心理健康方面均受到影响。尽管如此，参与者仍对自身生活持积极态度。照护者面临的最常见困难包括：实施膀胱导尿、提供日常照护、经济负担及无障碍环境不足。本研究证据等级为V级，属于专家意见。