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

Bigby, Christine; Whiteside, Mary; Douglas, Jacinta

doi:10.3109/13668250.2017.1378873

Cited by 66 publications

(73 citation statements)

References 49 publications

(72 reference statements)

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“…This reflects the perspectives of professionals reported in a number of qualitative studies where limits to SDM were reached with excessive risk (Gooding, 2015;Kokanovic et al 2018;Sinclair et al 2019;Bigby, Whiteside & Douglas, 2019). Failing to intervene was perceived as neglect and dereliction of duty of care.…”

Section: Discussionmentioning

confidence: 55%

“…The perspectives of psychologists in the present study reflect in many ways the reported perspectives of other professionals, including health, legal and disability support workers (Gooding, 2015;Kokanovic et al 2018;Sinclair et al 2019;Bigby, Whiteside & Douglas, 2019). Their understanding of SDM and their views on it are therefore important.…”

Section: Perspectives Of Professionalsmentioning

confidence: 56%

“…The perspectives of various stakeholders on SDM, including health professionals, legal professionals and disability support workers, have been investigated (Gooding 2014;Kokanovic et al 2018;Sinclair et al 2019;Bigby et al 2019). Across this emergent body of qualitative studies, some common themes have been identified.…”

Section: Introductionmentioning

confidence: 99%

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Psychologists' perspectives on supported decision making in Ireland

Rogers

Pilch

McGuire

et al. 2020

J intellect Disabil Res

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Background A new legal capacity act was introduced in Ireland in 2015. This study aimed to identify and critically examine key issues in the area of decisionmaking capacity from the perspective of psychologists working with adults with an intellectual disability. Methods A qualitative exploratory approach was employed, and the study was positioned in a social constructionist framework. Purposive and snowballing sampling methods were used to recruit 15 clinical psychologists working with adults with an intellectual disability. Data were collected with the use of individual semistructured interviews. Interview transcripts were analysed using a model of thematic analysis. Results Six themes were identified: (1) a presumption of capacity but a culture of incapacity, (2) supporting decision making as a process, (3) authenticity of decision making, (4) need for support and training, (5) contributions of psychology and (6) the way forward. Conclusions Participants described that people with intellectual disabilities were often excluded from decision-making processes. They welcomed the functional approach to decision making, considered substituted decision making to be necessary within a support framework and described supporting decision making as a process. Systemic, resource and attitudinal challenges were identified.

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Section: Discussionmentioning

confidence: 55%

Section: Perspectives Of Professionalsmentioning

confidence: 56%

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Psychologists' perspectives on supported decision making in Ireland

Rogers

Pilch

McGuire

et al. 2020

J intellect Disabil Res

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“…Many of these authors turn to the UN Convention on the Rights of Persons with Disabilities (UN, ) which enshrines the right to legal capacity for disabled people in Article 12, and further the right to have all necessary supports to exercise that capacity. This has been the basis for legal frameworks such as the 2005 Mental Capacity Act in England and Wales, and for models of supported decision making (SDM) (Bach, ; Bigby et al, ), a process “by which a third party …assists or helps an individual with an intellectual or cognitive disability to make legally enforceable decisions by themselves” (Devi, , pp 792–793). It should not be assumed, simply because someone has an intellectual disability, that they cannot make a decision.…”

Section: Introductionmentioning

confidence: 99%

“…If disability is situated at the interface of impairment and the environment with which a person comes into contact, then it makes sense to look towards relationships (Forrester‐Jones et al, ; Jamieson, Theodore, & Raczka, ; Simplican, Leader, Kosciulek, & Leahy, ; Williams & Porter, ) as an important place in which disabling or enabling effects will play out. Most research in this area is based on interviews or focus groups (Bigby et al, ; Jamieson et al, ), where participants are asked to talk about the ways in which they make joint decisions in the context of “a good working relationship,” although Dunn, Clare, and Holland () did include some ethnographic observation when asking support workers about how they made decisions for people with intellectual disabilities. Authors more frequently discuss relational autonomy as an abstract concept, rather than considering in detail the variety of ways in which it plays out in interaction, which is the path followed in this article.…”

Section: Introductionmentioning

confidence: 99%

Managing relational autonomy in interactions: People with intellectual disabilities

Dowling

Williams

Webb

et al. 2019

Research Intellect Disabil

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BackgroundThis article is about interactions that occur when someone with intellectual disabilities is engaged in everyday activities with a personal assistant (PA) or a support worker.MethodWe examine the detail of nine hours of naturally occurring video‐recorded interactions, to explore how “relational autonomy” is done in practice. Nine people with ID and seven staff took part in the research, which took place in England from 2016–17.ResultsWe selected six extracts to illustrate different types of joint decision‐making. Informed by inclusive research with a drama group of people with intellectual disabilities, we focus on the ways in which (a) future plans are discussed; (b) choices are offered during an activity; (c) people reflect on their decisions.ConclusionThe article concludes with discussion about the teaching and learning content of choice‐making, on relational autonomy, and the practice learning for PAs, support workers and for people with intellectual disabilities.

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Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015

Bigby

Douglas

Carney

et al. 2017

Aust J Social Issues

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The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010-2015, a series of projects have piloted various models of delivering decision making support. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non-statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person's life, and integrate decision making support across all life domains.

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

Cited by 66 publications

References 49 publications

Psychologists' perspectives on supported decision making in Ireland

Psychologists' perspectives on supported decision making in Ireland

Managing relational autonomy in interactions: People with intellectual disabilities

Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015

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