TRANS-DISAB - Meeting the challenges of a successful transition in young people with disabilities: participation, health and quality of life in a life course perspective

我们的研究计划旨在解决日益增长的残疾人在向成年过渡的关键时期的需求，并更好地了解身体，社会和态度环境对参与社会和生活质量的影响。残疾青年是一个新兴的公民群体，他们享有更好的医疗保健、新的通信技术和社会态度，能够融入生活的各个领域。他们既有权利也有愿望充分参与社会。然而，他们在许多领域仍然处于不利地位，面临着许多障碍，如超过青春期的保健支离破碎，保健、社会、教育和与工作有关的服务缺乏一体化，在自己家中和社区难以获得，不仅对个人而且对其支持网络有害的污名化态度。与身体健全的同龄人相比，所有这些都会导致孤立、脆弱性增加以及对生活环境的参与受到限制。由于就业率和教育水平较低，残疾人的贫困率比平均水平高出70%。 我们的总体目标是探索生活在法国和德国非常不同的欧洲地区的脑瘫年轻人成功过渡到成年的决定因素。脑性瘫痪是一种典型的残疾状况。我们的目标是确定有利因素和障碍的过渡过程中，在几个生活领域，侧重于环境的决定因素和卫生保健服务的干预措施。通过与一般人口的比较，可以确定哪些领域的困难最为普遍。我们将描述从童年到青年的轨迹，并在纵向样本中确定在健康，教育，专业和社会领域成功的青年成年的预测因素，我们从两个以前的脑瘫青年数据收集中获得数据。主要结果是根据国际功能分类定义的参与，《世界卫生组织残疾与健康公约》（2001年）。它将以参与的数量及其主观评价来衡量。次要结果将是健康状况和生活质量，这是一个多维概念，包括对生活积极和消极方面的主观评价。预测因素将是环境因素（物理和社会）、社会决定因素和态度、保健服务、社会服务和就业机会，同时考虑到各地点的区域差异。

Our research program is intended to address the needs of a growing population of people with disabilities during the critical period of the transition to adulthood and to better understand the impact of the physical, social and attitudinal environment on participation in society and quality of life in young adults with cerebral palsy. Young people with disabilities represent an emerging group of citizens enjoying better health care, new communication technologies and societal attitudes allowing inclusion in all areas of living. They have both the right and the wish to fully participate in society. However, they continue to be disadvantaged in many domains and face numerous barriers such as fragmented health care beyond the age of adolescence, lack of integration of health, social, educational, and work related services, poor accessibility in their own homes and in the community, stigmatizing attitudes harmful not only to the individual but also to their supporting network. All result in isolation, increased vulnerability, and restricted involvement in life situations as compared to able-bodied peers. With lower employment rate and education level, the poverty rate for the disabled is 70% higher than the average. Our overall objective is to explore the determinants of a successful transition to adulthood in young people with cerebral palsy living in very different European regions in France and Germany. Cerebral palsy is studied as an exemplar of the disabled condition. We aim to identify enabling factors and barriers in the transition process in several life areas, focusing on environmental determinants and health care services amenable to interventions. Comparison with the general population will identify in what domains difficulties are the most prevalent. We will characterize the trajectories from childhood to young adulthood and determine the predictors of a successful young adulthood in the health, educational, professional and social fields in a longitudinal sample for which we have data from two previous data collections of young people with cerebral palsy.The main outcome is participation as defined by the International Classification of Functioning, Disability and Health (ICF) of the WHO (2001). It will be measured both as the quantity of participation as well as its subjective appraisal. The secondary outcome will be health status and quality of life, a multidimensional concept which includes subjective evaluations of both positive and negative aspects of life. Predictors will be the environmental factors (physical and social), social determinants and attitudes, health services, social services, and access to employment taking into account regional variation across sites.