Disability, care and participation: secondary analysis of the Life Opportunities Survey and the 2009/10 Survey of Carers in Households

世界上有残疾的人越来越多。医疗和技术的进步意味着，有缺陷的婴儿和儿童更有可能活到成年，成年人更有可能在事故和疾病中幸存下来，而以前这些事故和疾病可能会导致他们死亡，更多的人活到老年，但往往有长期的疾病和缺陷。与此同时，政府面临的财政限制意味着，重点正在放在家庭成员和朋友（“照顾者”）身上，以提供残疾人和老年人所需的支持，帮助他们独立生活。自20世纪80年代中期以来，英国开展了一系列关于残疾、残疾和照顾者的调查，帮助政策制定者了解有多少人需要和提供支持，这些调查为组织提供了“弹药”，帮助他们开展变革运动。最新的“生活机会调查”及“家庭照顾者调查”的资料已于近期公布，为研究伤残、残疾及照顾的新模式提供了重要机会。LOS是令人兴奋的，因为它是第一个探索人们生活的环境（住房、交通、其他人的态度等等）如何影响他们的缺陷是否成为残疾的调查。在这样做的过程中，它回应了对残疾人及其组织所做的早期调查的批评。这些批评指出，往往是人们所处的环境和他们可以获得的支持服务将缺陷变成残疾。LOS还收集了家庭中每个人的信息，因此我们还可以探索残疾人及其家庭中的其他人是否在参与社会方面遇到了类似的障碍。调查对象包括儿童和青少年（11岁以上）以及所有年龄段的成年人。家庭照顾者调查很重要，因为它似乎表明，自20世纪80年代中期以来，照顾者的人口发生了变化，越来越多的人在自己进入老年时提供照顾。我们的工作将：-探索损伤，残疾和护理模式如何随着时间的推移而变化；-看看残疾人和与他们一起生活的人如何在参与社会方面遇到障碍；——探讨生活在贫困地区或农村的残疾人是否遇到了与其他残疾人不同种类和程度的障碍。我们将使用这两项调查的数据，并进行不同的统计测试，这将使我们能够梳理出所有可能影响残疾或照顾者经历的不同因素。当我们做这个项目时，我们将使用有这类工作经验的高级研究人员来培训和‘培养’下一代研究人员。我们的项目将有三个合作伙伴：SCOPE，一个为残疾人服务的组织；英国照顾者协会，一个照顾者组织；以及负责制定老年人和残疾人政策的英国政府部门——工作和养老金部。这些合作伙伴将选择我们将在工作中探索的详细问题。他们还将帮助我们把我们的工作发现带给其他组织和团体，这些组织和团体也会觉得这些发现很有帮助。在项目结束时，我们将撰写工作的不同部分的报告，并将用日常语言撰写一份四页的总结，以便我们可以与尽可能广泛的残疾人，护理人员和更广泛的公众分享我们的发现。我们将为与残疾人和护理人员一起工作的专业人士以及其他研究人员撰写文章。最后，我们将举办一个研讨会，在那里我们可以面对面地与其他人分享我们的发现，他们可以在他们的工作和活动中使用这些发现。

Growing numbers of people across the world live with impairments. Medical and technological advances mean that babies and children with impairments are more likely to survive into adulthood, adults are more likely to survive accidents and diseases that would previously have killed them, and more people are living to old age, but often with long-term conditions and impairments. At the same time, financial constraints on governments mean that emphasis is being put on family members and friends ('carers') to provide the support that disabled and older people need to help them live independently.The UK has carried out a range of surveys of impairment, disability and carers since the mid-1980s that have helped policy makers understand how many people need and provide support and these have provided organisations with 'ammunition' to help them campaign for change. The information from the latest in these series of surveys - the Life Opportunities Survey (LOS) and the Survey of Carers in Households (SCH) - has recently become available and offers an important opportunity to explore new and emerging patterns of impairment, disability and caring. The LOS is exciting because it is the first survey to explore how the environment in which people live (housing, transport, other people's attitudes and so on) influences whether or not their impairments become disabilities. In doing this, it has responded to the criticisms of earlier surveys that disabled people and their organisations made. These criticisms pointed out that it is often the environment that people live in and the support services they have access to that turn an impairment into a disability. The LOS also collects information about everyone in a household, so we can also explore whether disabled people and other people in their household experience similar barriers to participation in society. The survey covers both children and young people (from the age of 11) and adults of all ages.The Survey of Carers in Households is important because it seems to show that the population of carers has changed since the mid-1980s, with more people providing care when they themselves are well into older age.Our work will:- explore how patterns of impairment, disability and caring have changed over time;- look at how disabled people and those who live with them experience barriers to participating in society;- explore whether disabled people who live in more deprived areas or in the countryside experience different sorts andsizes of barriers to other disabled people.We will do this by using data from the two surveys and carrying out different statistical tests that will allow us to tease out all the different factors that might affect the experience of being disabled or being a carer.As we do the project, we will be using senior researchers who have experience of this sort of work to train and 'bring on' the next generation of researchers.We will have three partners in our project - SCOPE, an organisation of and for disabled people; Carers UK, an organisation of and for carers; and the Department of Work and Pensions, the English government department with lead responsibility for policy about older and disabled people. These partners will choose detailed questions that we will explore in our work. They will also help us to bring the findings from our work to other organisations and groups who will find them helpful.At the end of the project, we will write reports of the different parts of the work, and will also write a four page summary, in everyday language, so that we can share our findings with as wide a range of disabled people, carers and the wider public as possible. We will write articles for professionals who work with disabled people and carers, as well as for other researchers. Finally, we will run a workshop where we can share our findings face-to-face with others who can use them in their work and campaigning.