ABSTRACT

Background

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them.

Method

Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis.

Results

Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult’s horizons and enabling risk.

Conclusions

The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support.

中文翻译：

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支持智障成年人探索决策偏好、限制和后果的父母策略

摘要

背景

支持参与决策是复杂的、动态的和多因素的。本研究的目的是更多地了解智障成年人的父母在提供决策支持方面遇到的困难以及他们解决这些困难的策略。

方法

参与者是 23 名家长，他们定期为他们的成年智障人士提供决策支持。大多数成年人（19 岁）住在家里。在研究期间，父母至少参加了 3 次半结构化访谈。我们应用了社会建构主义理论视角和模板方法进行分析。

结果

调查结果分为三个核心类别，即做出正确的决定、使决策支持困难的因素以及管理不确定性的策略，其中包括控制、影响、扩大成年人的视野和增加风险。

结论

获得的知识将有助于培养父母提供决策支持的能力，从而更好地理解和尊重他们所支持的人的意愿和偏好。