Universal newborn hearing screening: parental reflections on very early audiological management.

OBJECTIVE: This article seeks to understand very early audiological management from a parental perspective, after the early identification of their child's hearing loss through universal newborn hearing screening (UNHS). DESIGN: Data are taken from the national evaluation of the introduction of UNHS in England. Forty-five parents and caregivers participated in a qualitative, narrative study within which they identified key challenges generated by the audiological management of very young babies with hearing loss at home. RESULTS: Concern centered on the virtual timetable constructed by parents after screening, the practical daily management issues and the need to establish infant rather than a child focus in audiological practice. In addition, specific challenges relating to moderate hearing loss were identified. CONCLUSIONS: Results are of particular relevance to pediatric audiologists, teachers of the deaf and those offering early intervention services.

Universal newborn hearing screening and early identification of deafness: parents' responses to knowing early and their expectations of child communication development.

This article presents results from an interview study of 45 parents/caregivers (representing 27 families) whose infants were correctly identified as deaf during the first phase of the implementation of the national universal Newborn Hearing Screening Programme in England. Average age of children when parents were interviewed was 25 weeks. Two issues are explored: (a) how parents talk about significance of knowing early that their child is deaf and (b) parents' expectations of their child's development in light of early identification. Although results demonstrate clear support from parents' perspective of knowing early, they also identify the psychological complexities of recognizing both the grief and reassurance that early knowledge brings; the risks of early knowledge-inducing timetables of expectations that create distress when not met speedily; the extent to which parental models of the developmental advantages of early identification are underpinned by notions of normal speech and the possibility of being like hearing children; and the pervasiveness of deficit and illness models associated with having identified deafness early. Implications for parental support and professional responses are also discussed.

Informed choice and deaf children: underpinning concepts and enduring challenges.

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.

Interprofessional working in the context of newborn hearing screening: Education and Social Services compare challenges.

This article presents data from a study undertaken as part of the national evaluation of the introduction of the newborn hearing screening programme (NHSP) in England. It considers the impact on Education and Social Services of NHSP from the perspective of how each agency perceives each other's role in circumstances where NHSP is requiring a greater focus on interagency and interprofessional working. The qualitative interview study involved 27 education and 15 social services respondents from phase 1 NHSP sites. It reveals considerable agreement on the poorly developed nature of joint working but considerable disagreement about the roots of such. Education is more likely to focus on issues of role, value and skills; social services on conflicts of ethos and culture. The problem of social services' capacity to respond to referrals concerning deaf children was common to both. The findings are placed in the context of government guidance, in particular Early Support and Children's Trusts, both of which support a strategic and statutory basis for interprofessional working in this context.

Parents' of deaf children evaluative accounts of the process and practice of universal newborn hearing screening.

This article presents results from a narrative interview study of 45 parents/caregivers whose infants were correctly identified as deaf through Phase 1 of the Newborn Hearing Screening Programme in England. It concerns the period from the first screening event to the point of referral for audiological assessment. It focuses on the meanings parents attribute to the inconclusive message that the screen delivers and analyzes what it is that differentiates parents for whom such an outcome raises little concern from those who express dissatisfaction. Parents' evaluations of specific features of screening practice and process such as communication style and manner are also considered. It ends with a discussion of the status and validity of parents' accounts within the context of an evaluation of a national screening program and the further development of professional practice.

To what extent do the characteristics of the object of evaluation influence the choice of epistemological framework? The case of universal newborn hearing screening.

In this article, the authors explore the role that characteristics and circumstances attendant on the object of an evaluation might play in the choice of epistemological framework underpinning research design. They consider examples from the consumer-focused evaluation of the introduction of universal newborn hearing screening in England. In particular, they look at how screen- and program-specific issues exerted influence at the levels of epistemology and method, arguing that these choices are not simply a product of values and questions that underpinned one kind of approach to knowledge production in comparison with another.