Caring for a Child With Cerebral Palsy: Cross-Sectional Study.

IF 2.3 Q2 PEDIATRICS

JMIR Pediatrics and Parenting Pub Date : 2026-08-20 DOI:10.2196/89774

Anwar B Almutairi, Zainab Jasem, Amneh Sadeq, Maraheb Alkhalidi

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Abstract

Background: Caregivers of children with cerebral palsy (CP) encounter unique challenges that are not common in typical families. The distress of these families starts in the diagnosis period, which is marked by a "wait and see" approach, and continues because of the lack of a clear prognosis.

Objective: This study aimed to identify the level of perceived ease of care faced by families of children with CP in Kuwait and its effect on their satisfaction with daily activities.

Methods: This cross-sectional study recruited caregivers of children with CP aged 5 to 16 years. The Ease of Caregiving for Children (ECC) scale, the self-care domain of the Child Engagement in Daily Life Measure (CEDLM), and the Satisfaction with Daily Occupations (SDO) questionnaire were used.

Results: Fifty-three caregivers participated (mean age 39.77, SD 7.56 years; children's mean age 8.04, SD 2.57 years; Gross Motor Function Classification System: level I, n=18; level II, n=10; level III, n=13; level IV, n=5; and level V, n=7). ECC score was significantly correlated with SDO score (P=.03) and the participation score in the self-care scale of the CEDLM (P=.001).

Conclusions: Challenges of caring for a child with CP are positively correlated with caregivers' satisfaction with daily activities and the child's self-care abilities. Regular check-ins with caregivers and the establishment of support groups for caregivers would help with providing help sooner. Qualitative assessment is needed to explore these challenges in this region.

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照顾一名脑瘫儿童：横断面研究。

背景：脑瘫儿童（CP）的照顾者遇到了在典型家庭中不常见的独特挑战。这些家庭的痛苦始于诊断期，这一阶段的特点是“观望”，并由于缺乏明确的预后而持续下去。目的：本研究旨在确定科威特患有CP的儿童家庭所面临的护理的感知程度及其对日常活动满意度的影响。方法：本横断面研究招募了5 - 16岁CP患儿的护理人员。采用儿童照顾便利度（ECC）量表、儿童日常生活参与量表（CEDLM）自我照顾域和日常职业满意度问卷（SDO）。结果：53名护理人员参与，平均年龄39.77岁，SD 7.56岁；儿童平均年龄8.04岁，SD 2.57岁；大运动功能分类系统：一级，n=18；二级，n=10；三级，n=13；四级，n=5；ECC评分与CEDLM自我照顾量表的SDO评分（P= 0.03）和参与评分（P= 0.001）显著相关。结论：照顾CP儿童的挑战与照顾者对日常活动的满意度和儿童的自我照顾能力呈正相关。定期与护理人员联系，并为护理人员建立支持小组，将有助于更快地提供帮助。需要进行定性评估，以探讨该地区的这些挑战。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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