Smits Dirk-Wouter, van Gorp Marloes, van Wely Leontien, Verheijden Johannes, Voorman Jeanine, Wintels Sophie, van der Cruijsen Joyce, Ketelaar Marjolijn
Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Rehabilitation Medicine, Amsterdam Movement Sciences, Amsterdam, The Netherlands.
Arch Rehabil Res Clin Transl. 2019 Aug 22;1(3-4):100021. doi: 10.1016/j.arrct.2019.100021. eCollection 2019 Dec.
To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment.
Cohort study as part of a prospective longitudinal research program.
Clinic.
Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System.
Not applicable.
Accomplishment (0-9 scale; with score <8 "having difficulties") and satisfaction (1-5 scale; with score 3 "neutral") were assessed using the Life-Habits questionnaire, on 6 domains (Responsibilities, Interpersonal relationships, Community life, Education, Employment, Recreation). Per domain, we analyzed scatterplots of accomplishment vs satisfaction. Additionally, we compared determinant-models (including factors of CP, activity, person, and environment) using regression analysis.
For accomplishment, mean scores were <8.00 except for Interpersonal relationships. For satisfaction, mean scores varied between 3.85 and 4.34. Overall, individuals with similar levels of accomplishment showed large ranges in their levels of satisfaction, which was expressed by low explained variances, especially on Education (6%). Furthermore, different sets of determinants were found for accomplishment (predominantly CP factors) compared with satisfaction (predominantly environment factors).
This study revealed a dissociation between participation accomplishment and satisfaction with participation among adolescents with CP. For practice and research, we recommend not only to focus on accomplishment but also, if not mainly, on satisfaction.
探讨12至18岁脑瘫青少年参与社会角色的情况，比较其在成就感与满意度方面的表现。
队列研究，作为一项前瞻性纵向研究项目的一部分。
诊所。
参与者为45名青少年（58%为男性，平均年龄15岁6个月），其脑瘫程度为粗大运动功能分类系统的I-II级（88%）和III-IV-V级（12%）。
不适用。
使用生活习惯问卷在6个领域（责任、人际关系、社区生活、教育、就业、娱乐）评估成就感（0至9分；得分<8分为“有困难”）和满意度（1至5分；得分3分为“中性”）。每个领域，我们分析了成就感与满意度的散点图。此外，我们使用回归分析比较了决定因素模型（包括脑瘫、活动、个人和环境因素）。
在成就感方面，除人际关系外，平均得分均<8.00。在满意度方面，平均得分在3.85至4.34之间。总体而言，成就感水平相似的个体满意度水平差异很大，这表现为解释方差较低，尤其是在教育领域（6%）。此外，发现成就感的决定因素集（主要是脑瘫因素）与满意度的决定因素集（主要是环境因素）不同。
本研究揭示了脑瘫青少年参与成就与参与满意度之间的分离。对于实践和研究，我们建议不仅要关注成就，而且如果不是主要关注的话，也要关注满意度。
