Autonomy and intellectual disability: the case of prevention of obesity in Prader–Willi syndrome

Hooren, R.H. van; Widdershoven, Guy; Borne, H.W. van den; Curfs, Leopold

doi:10.1046/j.1365-2788.2002.00426.x

Cited by 35 publications

(52 citation statements)

References 11 publications

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“…The implicit goal may often be to bring the views or goals of a person into line with those favoured by their supporters, but through a dialogue about consequences rather than the supporter imposing a set of rules (e.g., van Hooren et al, 2002). Although this is an extremely difficult area, the potential for the supporter to exert their influence in subtle ways and make it appear as if the person with learning disabilities has made the choice themselves is enormous and must be acknowledged.…”

Section: ) the Pervasiveness Of Teachingmentioning

confidence: 99%

Promoting choice and control in residential services for people with learning disabilities

Finlay

Walton

Antaki

2008

Disability & Society

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This paper discusses the gap between policy goals and practice in residential services for people with learning disabilities. Drawing on a nine-month ethnographic study of three residential services, it outlines a range of obstacles to the promotion of choice and control that were routinely observed in the culture and working practices of the services. Issues discussed include conflicting service values and agendas, inspection regimes, an attention to the bigger decisions in a person's life when empowerment could more quickly and effectively be promoted at the level of everyday practice, problems of communication and interpretation, and the pervasiveness of teaching. We offer a range of suggestions as to how these obstacles might be tackled.Promoting choice and control..

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Section: ) the Pervasiveness Of Teachingmentioning

confidence: 99%

Promoting choice and control in residential services for people with learning disabilities

Finlay

Walton

Antaki

2008

Disability & Society

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“…19 However, the categories applied did not emerge from the data; that is, in vivo codes, typical of grounded theory studies, were not used. Instead categories based on a pre-existing theoretical framework (a priori codes) were used, 20 14,21,22 Focus groups were analyzed in Spanish and selected quotations were translated into English for inclusion in this report. Quotations that appear below are followed by FG1 for focus group 1 and FG2 for focus group 2; names and other details have been changed to maintain confidentiality.…”

Section: Methodsmentioning

confidence: 99%

“…12,13 What autonomy means and its importance for people with intellectual disability and their families (especially their parents), the role it plays in quality of life, how people with intellectual disability exercise autonomy and how to support and facilitate its development are current topics of interest and research. [4][5][6][7]14,15 However, little research has been done on how autonomy in the context of intellectual disability is understood, implemented or supported in Latin America, Africa and most of Asia.…”

Section: Introductionmentioning

confidence: 99%

“…Autonomy can also be interpreted by others, and the person attempting to exercise his or her autonomy can either cooperate with the interpretation or resist it, through challenging or other behaviors. 14,16 In the present article this concept of autonomy is applied to qualitative data collected from family members (legal guardians) of adolescents and adults with different levels of intellectual disability in Mexico. All of the intellectually disabled family members in question attend or have graduated from a training program for independent living that promotes autonomy in people with intellectual disability (the program offered by the Center for Integral Training and Development, CADI for its initials in Spanish, http://www.cadi.org.mx/; see also the article by Katz et al in this volume).…”

Section: Introductionmentioning

confidence: 99%

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View of Mexican family members on the autonomy of adolescents and adults with intellectual disability

Allen‐Leigh¹,

Katz²,

Rangel-Eudave³

et al. 2008

Salud pública Méx

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This study aims to describe the ways in which Mexican adolescents and adults with intellectual disability exercise autonomy. Two focus groups were carried out with family members who are the legal guardians of people with intellectual disability who have received independent living training at the Center for Integral Training and Development (CADI, per its abbreviation in Spansh). Focus group transcripts were analyzed with codes defined a priori, based on an existing theoretical framework on autonomy and quality of life among intellectually disabled persons. Autonomy is exercised by the intellectually disabled in the personal, social, sexual and economic spheres of life. Empowered autonomy implies that the person is taught the necessary skills and then allowed to act upon his or her own interests. Negotiated autonomy includes guidance, explanation and negotiation; it constitutes a learning process. Interpreted autonomy is the most limited type described, and implies protection, interpretation and may involve decision-making by others. These types of autonomy constitute a complex phenomenon and the divisions between them are indistinct. ResumenEste estudio busca describir las maneras en que jóvenes y adultos mexicanos con discapacidad intelectual ejercen la autonomía. Dos grupos focales se llevaron a cabo con familiares de personas con discapacidad intelectual quienes han recibido capacitación para la vida independiente en el Centro de Capacitación y Desarrollo Integral, CADI. Se analizaron las transcripciones con códigos definidos a priori, basados en un marco teórico preexistente sobre autonomía y calidad de vida entre personas con discapacidad intelectual. Las personas con discapacidad intelectual ejercen autonomía en diversos ámbitos: personal, social, sexual y económico. La autonomía empoderada se da cuando se le enseña a la persona las habilidades necesarias y luego se le permite actuar con base en sus propios intereses. La autonomía negociada implica ser guiado en las acciones, recibir explicaciones y negociar las decisiones; constituye un proceso de aprendizaje. La autonomía interpretada es el tipo más limitado que se describe, e implica protección, interpretación y puede involucrar la toma de decisiones por otros. Estos tipos de autonomía constituyen un fenómeno complejo y las divisiones entre ellas son difusas.Palabras clave: discapacidad intelectual; autonomía; empoderamiento; métodos cualitativos de investigación; México (

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“…However, poor implementation has the potential to give rise to 'cookbook care' where clinical guidelines are used simply as a recipe for healthcare delivery without due consideration for the individual patient (Pearson et al, 2007). Any practice failing to consider the preferences of the individual patient is not evidence-based, so a partnership approach is needed which takes into account patient autonomy, choice and preference to be expressed (van Hooren et al, 2002).…”

Section: Process Of Introducing Evidence-based Practicementioning

confidence: 99%

Introducing evidence into nursing practice: using the IOWA model

Doody¹,

Doody

2011

Br J Nurs

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Evidence-based practice has gained increasing popularity in all healthcare settings. Nurses are urged to use up-to-date research evidence to ensure better patient outcomes and inform decisions, actions and interactions with patients, to deliver the best possible care. Within the practice setting, there is an increasing challenge to provide clearly measurable care of the highest quality, which is evidence-based. In order for nurses to operate from an evidence-based perspective, they need to be aware of how to introduce, develop and evaluate evidence-based practice. This article presents how evidence may be introduced into practice using the Iowa model, offering practical advice and explanation of the issues concerning nurses in practice.

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Autonomy and intellectual disability: the case of prevention of obesity in Prader–Willi syndrome

Abstract: This approach results in more attention to processes of interpretation, deliberation and joint learning.

Cited by 35 publications

References 11 publications

Promoting choice and control in residential services for people with learning disabilities

Promoting choice and control in residential services for people with learning disabilities

View of Mexican family members on the autonomy of adolescents and adults with intellectual disability

Introducing evidence into nursing practice: using the IOWA model

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