Lucerne University of Applied Sciences and Arts, School of Social Work, Institute of Social Management, Social Policy and Prevention, Werftestrasse 1, Postfach 2945, CH-6002, Lucerne, Switzerland.
Lucerne University of Applied Sciences and Arts, School of Social Work, Institute of Social Pedagogy and Education, Werftestrasse 1, Postfach 2945, CH-6002, Lucerne, Switzerland.
BMC Public Health. 2020 May 7;20(1):642. doi: 10.1186/s12889-020-08770-x.
How adults with disabilities perceive participation has received little attention. Our purpose was to formulate a grounded theory on participation, based on the subjective experience of adults with cognitive, physical, or psychiatric impairment(s), and to identify barriers, facilitators, and support needs concerning participation in different areas of life. We aimed to explore whether the United Nations' Convention on the Rights of Persons with Disabilities (CRPD), ratified by Switzerland in 2014, and its principles are being met. Here we report on the main category and focus on the participation areas 'family of origin' and 'intimate relationships.'
In a qualitative, grounded theory study, we conducted problem-centered interviews with 23 adults with cognitive, physical, or psychiatric impairments (30-53 years; 11 men, 12 women), with different housing (on their own, assisted living, with parents) and work situations (primary vs. secondary labor market) in nine German-speaking Swiss cantons.
Participation can be understood as a continuum that extends on a horizontal level (from participation is restricted to participation takes place) and a vertical level (separative setting vs. inclusive setting). In separative as well as in inclusive settings, diverse levels of participation are possible. Many participants were stuck in an 'in-between' area between separative and inclusion-oriented settings. In the family of origin, there was a thin line between fulfilling relations that enhance participation and conflictual relations and overprotective parenting that limit participation. In intimate relationships, opportunities for participation were limited overall. Many interviewees were single. Social environment and family of origin (e.g., parents) can enable and facilitate intimate relationships and sexual contacts but can also be an important barrier.
Participation can be understood as a continuum. Participation restrictions exist in separative as well as in inclusive-oriented settings, also in the areas of family of origin and intimate relationships. Participation barriers must be torn down in separative as well as in inclusion-oriented settings. Trajectories to inclusive settings should be facilitated. Families with children with impairment(s) should be supported from early on to create the best possible participation possibilities for the (adult) person with impairment(s) and to support the family of origin itself.
成年人对参与的看法很少受到关注。我们的目的是根据认知、身体或精神障碍成年人的主观经验，制定一个关于参与的扎根理论，并确定参与生活不同领域的障碍、促进因素和支持需求。我们旨在探讨瑞士于 2014 年批准的《联合国残疾人权利公约》（CRPD）及其原则是否得到了满足。在这里，我们报告主要类别，并重点介绍“原生家庭”和“亲密关系”这两个参与领域。
在一项定性、扎根理论研究中，我们对 23 名患有认知、身体或精神障碍的成年人（30-53 岁；11 名男性，12 名女性）进行了以问题为中心的访谈，他们来自瑞士九个德语州，居住环境（独居、辅助生活、与父母同住）和工作情况（初级和二级劳动力市场）各不相同。
参与可以被理解为一个连续体，它在水平层面（从参与受限到参与发生）和垂直层面（分离环境与包容环境）上延伸。在分离和包容的环境中，都有可能达到不同程度的参与。许多参与者都卡在分离和包容导向环境之间的“中间”地带。在原生家庭中，促进参与的关系和限制参与的冲突关系以及过度保护的父母之间存在着一线之隔。在亲密关系中，总的来说，参与的机会有限。许多受访者都是单身。社会环境和原生家庭（例如，父母）可以促进和促进亲密关系和性接触，但也可能成为一个重要的障碍。
参与可以被理解为一个连续体。在分离和包容导向的环境中，包括原生家庭和亲密关系领域，都存在参与限制。在分离和包容导向的环境中，都必须消除参与障碍。应该促进向包容环境的发展轨迹。应该从早期开始支持有残疾儿童的家庭，为（成年）残疾人创造尽可能好的参与机会，并支持原生家庭本身。
