Majnemer Annette, Shikako-Thomas Keiko, Schmitz Norbert, Shevell Michael, Lach Lucy
School of Physical & Occupational Therapy, McGill University, 3654 Promenade Sir-William-Osler, Montreal, Quebec H3G 1Y5, Canada; Montreal Children's Hospital-McGill University Health Centre, 2300 Tupper Street, Montreal, Quebec H3H 1P3, Canada.
School of Physical & Occupational Therapy, McGill University, 3654 Promenade Sir-William-Osler, Montreal, Quebec H3G 1Y5, Canada.
Res Dev Disabil. 2015 Dec;47:73-9. doi: 10.1016/j.ridd.2015.08.009. Epub 2015 Sep 2.
With increasing age, youth with disabilities are at risk for decreased participation in leisure activities, a key component for physical and mental health. This prospective study describes changes in leisure participation and leisure preferences from school-age to adolescence in children with cerebral palsy (CP). Participants were recruited at school-age (6-12 years) for a study on participation and reassessed for a second study on adolescents (12-19 years) if >12 years. Thirty-eight children (24 males) with CP who could actively participate in the completion of the Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC) comprised the sample. Average time between assessments was 5.0 ± 1.3 years. Most children were ambulatory (32/38 Gross Motor Function Classification System I-II). In addition to the CAPE and PAC, children were evaluated using the Gross Motor Function Measure-66 and parents completed a socio-demographic questionnaire. Paired t-tests revealed a significant decline in leisure participation diversity and intensity (CAPE) for recreation (p<.0001), skill-based (p<.0001) and self-improvement (p<.05) activities, whereas social participation remained stable (p>.05). Diversity of active-physical activities increased modestly (p=.06) although intensity of participation in this activity domain decreased (p=.003). There was also a decline in enjoyment of leisure activities. Preferences for these leisure activities remained unchanged between school-age and adolescence, except for recreational activities. Gender, maternal education, family income and gross motor ability were not related to differences in CAPE/PAC scores with increasing age. Findings suggest that over time, children with CP's participation in leisure activities diminishes, which is of concern to their functioning and well-being. Parents may be more involved in early childhood in facilitating participation whereas in adolescence, youth may be faced with more environmental barriers and a greater awareness of challenges to participation. Adolescents demonstrated a persisting desire to do these activities, challenging rehabilitation specialists to prioritize strategies to promote greater participation as children transition to adolescence.
随着年龄的增长,残疾青年参与休闲活动的机会减少,而休闲活动是身心健康的关键组成部分。这项前瞻性研究描述了脑瘫(CP)儿童从学龄期到青春期休闲参与和休闲偏好的变化。研究对象在学龄期(6至12岁)被招募参与一项关于参与度的研究,如果年龄超过12岁,则在青少年期(12至19岁)进行第二项研究时再次接受评估。38名能够积极参与完成儿童参与和享受评估(CAPE)及儿童活动偏好(PAC)的CP儿童(24名男性)构成了样本。两次评估之间的平均时间为5.0±1.3年。大多数儿童能够行走(32/38,粗大运动功能分类系统I-II级)。除了CAPE和PAC外,还使用粗大运动功能测量-66对儿童进行评估,家长完成一份社会人口统计学问卷。配对t检验显示,娱乐(p<.0001)、技能型(p<.0001)和自我提升(p<.05)活动的休闲参与多样性和强度(CAPE)显著下降,而社交参与保持稳定(p>.05)。尽管该活动领域的参与强度下降(p=.003),但积极体育活动的多样性略有增加(p=.06)。休闲活动的享受程度也有所下降。除娱乐活动外,这些休闲活动的偏好在学龄期和青春期之间保持不变。性别、母亲教育程度、家庭收入和粗大运动能力与CAPE/PAC分数随年龄增长的差异无关。研究结果表明,随着时间的推移,CP儿童参与休闲活动的情况会减少,这关系到他们的功能和幸福感。在幼儿期,家长可能更多地参与促进孩子的参与,而在青春期,青少年可能面临更多的环境障碍,并且对参与面临的挑战有了更强的意识。青少年表现出持续进行这些活动的愿望,这对康复专家提出了挑战,要求他们在儿童向青少年过渡时优先制定促进更多参与的策略。