University of York, UK.
Health Soc Care Community. 2012 Sep;20(5):477-87. doi: 10.1111/j.1365-2524.2011.01045.x. Epub 2012 Feb 24.
Little is known about the decision-making processes that take place within families when a disabled young person is moving on from full-time education and, particularly, parents' roles and experiences. This paper reports the analysis of data collected from a subsample of parents (representing seventeen families) participating in the Choice and Change Project who had discussed choices associated with their child leaving full-time education. (The Choice and Change Project is a longitudinal, qualitative study of choice-making by four different groups of service users including disabled young people with degenerative conditions and their parents.) The data were collected from parents during up to three semi-structured interviews conducted over a thirty-month period. Descriptive theories of decision-making informed the analysis. Parents differed in the extent to which they were actively involved in making choices about the 'destination' of their child after leaving full-time education. To some extent, the ability of the young person to make choices themselves influenced this. Parents who were assuming responsibility for making choices stressed the importance of having relevant information and felt professionals had a key role to play in supporting access to information. Parents used a number of criteria to guide their choice-making, including distance from home, perceived quality of the environment and staff and the young person's responses to the setting. Much of the information needed to make a choice required a visit to all the possible options. Ensuring such visits were positive and useful experiences for themselves and their child could be very difficult; support to achieve these visits was highly valued but not routinely provided. The study also highlights the lack of recognition given to the significant amount of work that many parents undertake to ensure that a choice is realised, and also to the emotional journey parents take when making or assisting in such decisions.
对于残疾年轻人从全日制教育毕业时，家庭内部的决策过程，尤其是父母的角色和经历，人们知之甚少。本文报告了对参与“选择与改变项目”的父母（代表 17 个家庭）小组数据的分析，这些父母讨论了与孩子离开全日制教育相关的选择。（“选择与改变项目”是对四类服务使用者（包括患有退行性疾病的残疾年轻人及其父母）的决策制定进行的纵向、定性研究。）数据是在 30 个月的时间内通过最多三次半结构化访谈从父母那里收集的。描述性决策理论为分析提供了信息。父母在多大程度上积极参与孩子离开全日制教育后的“去向”选择方面存在差异。在某种程度上，年轻人自己做出选择的能力对此产生了影响。承担做出选择责任的父母强调了获取相关信息的重要性，并认为专业人员在支持获取信息方面发挥着关键作用。父母使用了一些标准来指导他们的决策，包括离家的距离、环境和员工的感知质量以及年轻人对环境的反应。做出选择所需的大部分信息都需要访问所有可能的选择。确保这些访问对他们自己和孩子来说都是积极和有用的体验可能非常困难；获得这些访问的支持非常有价值，但并未得到常规提供。该研究还强调了人们没有认识到许多父母为确保选择得以实现所做的大量工作，以及父母在做出此类决定或提供帮助时所经历的情感历程。
