Autonomy in participation in cerebral palsy from childhood to adulthood

被引:27
作者
Schmidt, Ann Katrin [1 ,2 ]
van Gorp, Marloes [1 ,3 ]
van Wely, Leontien [3 ,8 ]
Ketelaar, Marjolijn [4 ,5 ]
Hilberink, Sander R. [1 ,6 ]
Roebroeck, Marij E. [1 ,2 ]
Roebroeck, M. E. [2 ,7 ]
Tan, S. S. [2 ,7 ]
van Meeteren, J. [2 ,7 ]
van der Slot, W. [2 ,7 ]
Stam, H. [2 ,7 ]
Dallmeijer, A. J. [8 ]
de Groot, V. [8 ]
Ketelaar, M. [5 ,9 ]
Voorman, J. M. [5 ,9 ]
Smits, D. W. [5 ,9 ]
Wintels, S. C. [5 ,9 ]
Reinders-Messelink, H. A. [10 ,11 ]
Gorter, J. W. [12 ]
Verheijden, J. [13 ]
机构
[1] Univ Med Ctr Rotterdam, Erasmus MC, Dept Rehabil Med, POB 2040, NL-3000 CA Rotterdam, Netherlands
[2] Rijndam Rehabil, Rotterdam, Netherlands
[3] Vrije Univ Amsterdam, Amsterdam UMC, Amsterdam Movement Sci, Dept Rehabil Med, Amsterdam, Netherlands
[4] Univ Med Ctr Utrecht, Brain Ctr Rudolf Magnus, Ctr Excellence Rehabil Med, Utrecht, Netherlands
[5] Hoogstraat Rehabil, Utrecht, Netherlands
[6] Rotterdam Univ Appl Sci, Res Ctr Innovat Care, Rotterdam, Netherlands
[7] Univ Med Ctr, Erasmus MC, Rotterdam, Netherlands
[8] Vrije Univ Amsterdam, Amsterdam UMC, Amsterdam, Netherlands
[9] Univ Med Ctr Utrecht, Utrecht, Netherlands
[10] Revalidatie Friesland, Groningen, Netherlands
[11] Univ Med Ctr Groningen, Groningen, Netherlands
[12] McMaster Univ, Hamilton, ON, Canada
[13] BOSK, Assoc Physically Disabled Persons & Their Parents, Utrecht, Netherlands
关键词
YOUNG-ADULTS; MOTOR CAPACITY; CHILDREN; GROSS; INTERVENTION; ADOLESCENTS; MOBILITY;
D O I
10.1111/dmcn.14366
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Aim To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). Results In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. Interpretation This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. What this paper adds Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.
引用
收藏
页码:363 / +
页数:10
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