Informed Choice and Deaf Children: Underpinning Concepts and Enduring Challenges

Abstract

This article concerns the first stage of a research and development project that aimed to produce both parent and professional guidelines on the promotion and provision of informed choice for families with deaf children. It begins with a theoretical discussion of the problems associated with the concept of informed choice and deaf child services and then focuses specifically on why a metastudy approach was employed to address both the overcontextualized debate about informed choice when applied to deaf children and the problems associated with its investigation in practice with families and professionals. It presents a detailed analysis of the conceptual relevance of a range of identified studies "outside" the field of deafness. These are ordered according to 2 main conceptual categories and 7 subcategories-(a) the nature of information: "information that is evaluative, not just descriptive"; "the difficulties of information for a purpose"; "the origins and status of information"; and "informed choice and knowledge, not informed choice and information" and (b) parameters and definitions of choice: "informed choice as absolute and relative concept", "preferences and presumptions of rationality", and "informed choice for whom?" Relevant deaf child literature is integrated into the discussion of each conceptual debate in order both to expand and challenge current usage of informed choice as applied to deaf children and families and to delineate possible directions in the planning of the next stage of the main project aimed at producing parent/professional guidelines.

Analysing care-related decisions in parents of congenitally deaf children: introduction of an explanatory model

“…The latter can be considered as gatekeepers to information on deafness, first of all for parents who are unfamiliar with the issue and in need of information Á especially in the period after first screening. This emphasises the relevance of the challenges identified by Young et al (2006) concerning informed choice in issues that involve deaf children. We found parents' information-seeking initiatives outside support relations to be of secondary importance (Hardonk et al 2010(Hardonk et al , 2011c, for instance aimed at adding missing details to information received from formal or informal sources.…”

Informing choice: The organization of institutional interaction in clinical midwifery care

“…Health decision models abound, but terminology and specific details are often inconsistent (Moumjid, Gafni, Brémond, & Carrière, 2007;Young et al, 2006). In a paternalistic model, the provider's knowledge is taken as superior to the client's, and simply providing information is seen as sufficient to improve outcomes (Dixon-Woods, 2001;Frohmann, 1992;Lee & Garvin, 2003;Tuominen, 1997).…”

Professionalism, Prejudice and Personal Taste: Does it Matter What We Wear?

“…Within the United Kingdom at present there is a call to develop policy and practice concerning informed choice for clients in the health and social care sector (Young et al, 2006). Both Stephen and Sylvia could have been given information related to the choices open to them.…”

“…We come to the client with our own opinions, values and preferences, all of which are likely to impact upon the information we present to clients, the way that it is presented and how it is interpreted by the clients. The information provided is also given within a social, political and cultural context, which could set limitations on an individual's expectations and social behaviour (Young et al, 2006). These points particularly relate to John who, whilst having the cognitive ability to understand the information provided did not necessarily understand the social, political and cultural contexts of being a woman.…”

“…(Young et al, 2006). This is an issue that requires open debate and awareness within the profession of responsibility and sensitivity to the prevailing social and cultural context in which an individual lives.…”