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“Your Child Has Cerebral Palsy”: Parental Understanding and Misconceptions
Journal of Child Neurology ( IF 1.9 ) Pub Date : 2021-02-23 , DOI: 10.1177/0883073821991300
Mugdha Mohanty 1 , Forrest Beaulieu 2 , Spoorthi Sampath 2 , Dimira Tambunan 3 , Shivangi Kataria 4, 5 , N Paul Rosman 6
Affiliation  

Importance:

Caregivers of children with cerebral palsy can best help their child if they understand the disorder and the correct terminology.

Objective:

To assess caregiver understanding of cerebral palsy.

Design:

This was a cross-sectional study from a large tertiary medical center in Boston, to assess understanding of the term cerebral palsy by primary caregivers of children and adolescents with cerebral palsy. All cases were obtained from hospital electronic medical records. Telephone surveys were conducted. Caregiver understanding of cerebral palsy was assessed by open-ended responses (50%) and success in answering true/false questions about cerebral palsy (50%).

Participants:

Primary caregivers of children 18 years and younger with cerebral palsy.

Results:

Thirty-three percent of caregivers denied ever being told that their child had cerebral palsy. Most caregivers identified cerebral palsy as a brain problem (79%), lifelong condition (73%), often caused by a perinatal (60%) or gestational (40%) insult. Fifty-two percent knew that cerebral palsy was nonprogressive. Sixty-two percent of caregivers believed they had a good, very good, or excellent understanding of cerebral palsy, whereas the investigators found 69% of caregivers had a good, very good, or excellent understanding of cerebral palsy (P = .006). Most caregivers rated very good or excellent the setting where cerebral palsy was discussed (58%), the explanations provided (55%), and the amount of time spent (45%), yet using a Pearson correlation coefficient, most important was the time spent (r = 0.53).

Conclusions:

Following discussion with their child’s physician, most primary caregivers of children with cerebral palsy have a good, very good, or excellent understanding of cerebral palsy. Most critical to a good understanding of cerebral palsy was the time spent in explaining the diagnosis.



中文翻译:

“你的孩子患有脑瘫”:父母的理解和误解

重要性:

如果脑瘫儿童的看护人了解这种疾病和正确的术语,他们可以最好地帮助他们的孩子。

客观的:

评估照顾者对脑瘫的理解。

设计:

这是一项来自波士顿一家大型三级医疗中心的横断面研究,旨在评估脑瘫儿童和青少年的主要照顾者对脑瘫一词的理解。所有病例均来自医院电子病历。进行了电话调查。通过开放式回答 (50%) 和成功回答有关脑瘫的真/假问题 (50%) 来评估照顾者对脑瘫的理解。

参与者:

18 岁及以下脑瘫儿童的主要照顾者。

结果:

33% 的看护人否认曾被告知他们的孩子患有脑瘫。大多数护理人员将脑瘫确定为脑部问题 (79%)、终生疾病 (73%),通常由围产期 (60%) 或妊娠期 (40%) 损伤引起。52% 的人知道脑瘫是非进行性的。62% 的护理人员认为他们对脑瘫有很好、非常好或非常好的理解,而调查人员发现 69% 的护理人员对脑瘫有很好、非常好的或非常好的理解 (P = .006)。大多数护理人员在讨论脑瘫的环境 (58%)、提供的解释 (55%) 和花费的时间 (45%) 方面评价非常好或优秀,但使用 Pearson 相关系数,最重要的是时间花费(r = 0.53)。

结论:

在与孩子的医生讨论后,大多数脑瘫儿童的主要照顾者对脑瘫有很好的、非常好的或非常好的了解。理解脑瘫最关键的是花在解释诊断上的时间。

更新日期:2021-02-23
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