Articlehybrid2017

Providing support for decision making to adults with intellectual disability: Perspectives of family members and workers in disability support services

Christine Bigby · Mary Whiteside · Jacinta Mary Douglas

122 citations0/0 files storedJournal of Intellectual & Developmental Disability

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Disability Rights and Representation Disability Education and Employment Down syndrome and intellectual disability research

Abstract

Background: Supporting people with intellectual disability to make decisions is an important issue for policy implementation yet there is little evidence about the practice of providing support.Method: This study aimed to understand the experiences of family members and disability support workers in providing support to adults with intellectual disability in Victoria, Australia. Twenty-three people drawn from these two groups participated in individual or focus group interviews.Results: Three major themes emerged from inductive thematic analysis: their ideas about decision support, approaches to support, and challenges they faced. Overall these revolved around juggling rights, practicalities, and risksConclusions: This study identified some of the challenges and practical strategies for providing decision support that can be used to inform practice and capacity building resources for supporters.

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References

2006Using thematic analysis in psychology 2006Constructing grounded theory : a practical guide through qualitative analysis 2006Constructing grounded theory. A practical guide through qualitative analysis 2014Convention on the Rights of Persons with Disabilities 2007Grounded Theory in Historical Perspective: An Epistemological Account 2007Self‐determination, social abilities and the quality of life of people with intellectual disability 2000Introduction 2015Relationships, autonomy and legal capacity: Mental capacity and support paradigms

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2018Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability 2019A family systems perspective on supporting self‐determination in young adults with intellectual and developmental disabilities 2017Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015 2018Effectiveness of Active Support for adults with intellectual disability in residential settings: Systematic review and meta‐analysis

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