Alys Young

Qualitative Research and Translation Dilemmas

The focus of this article is an examination of translation dilemmas in qualitative research. Specifically it explores three questions: whether methodologically it matters if the act of translation is identified or not; the epistemological implications of who does translation; and the consequences for the final product of how far the researcher chooses to involve a translator in research. Some of the ways in which researchers have tackled language difference are discussed. The medium of spoken and written language is itself critically challenged by considering the implications of similar ‘problems of method’ but in situations where the translation and interpretation issues are those associated with a visual spatial medium, in this case Sign Language. The authors argue that centring translation and how it is dealt with raises issues of representation that should be of concern to all researchers.

Effectiveness of enhanced communication therapy in the first four months after stroke for aphasia and dysarthria: a randomised controlled trial

Objective To assess the effectiveness of enhanced communication therapy in the first four months after stroke compared with an attention control (unstructured social contact). Design Externally randomised, pragmatic, parallel, superiority trial with blinded outcome assessment. Setting Twelve UK hospital and community stroke services. Participants 170 adults (mean age 70 years) randomised within two weeks of admission to hospital with stroke (December 2006 to January 2010) whom speech and language therapists deemed eligible, and 135 carers. Interventions Enhanced, agreed best practice, communication therapy specific to aphasia or dysarthria, offered by speech and language therapists according to participants’ needs for up to four months, with continuity from hospital to community. Comparison was with similarly resourced social contact (without communication therapy) from employed visitors. Outcome measures Primary outcome was blinded, functional communicative ability at six months on the Therapy Outcome Measure (TOM) activity subscale. Secondary outcomes (unblinded, six months): participants’ perceptions on the Communication Outcomes After Stroke scale (COAST); carers’ perceptions of participants from part of the Carer COAST; carers’ wellbeing on Carers of Older People in Europe Index and quality of life items from Carer COAST; and serious adverse events. Results Therapist and visitor contact both had good uptake from service users. An average 22 contacts (intervention or control) over 13 weeks were accepted by users. Impairment focused therapy was the approach most often used by the speech and language therapists. Visitors most often provided general conversation. In total, 81/85 of the intervention group and 72/85 of the control group completed the primary outcome measure. Both groups improved on the TOM activity subscale. The estimated six months group difference was not statistically significant, with 0.25 (95% CI –0.19 to 0.69) points in favour of therapy. Sensitivity analyses that adjusted for chance baseline imbalance further reduced this difference. Per protocol analyses rejected a possible dilution of treatment effect from controls declining their allocation and receiving usual care. There was no added benefit of therapy on secondary outcome measures, subgroup analyses (such as aphasia), or serious adverse events, although the latter were less common after intervention (odds ratio 0.42 (95% CI 0.16 to 1.1)). Conclusions Communication therapy had no added benefit beyond that from everyday communication in the first four months after stroke. Future research should evaluate reorganised services that support functional communication practice early in the stroke pathway. This project was funded by the NIHR Health Technology Assessment programme (project No 02/11/04) and is published in full in Health Technology Assessment 2012;16(26):1-160. Trial registration ISRCTN78617680

The meaning of cancer: implications for family finances and consequent impact on lifestyle, activities, roles and relationships

This study explores the impact that cancer‐related financial hardship/worries can have on family life.

Approaches to Social Research: The Case of Deaf Studies

Chapter 1: Introduction to the Book: Its Scope and Approach Chapter 2: Definitions and Transgressions Chapter 3: Epistemology, Methodology and Method in Research with d/Deaf People Chapter 4: Ethical Research Practice in Studies Which Involve Deaf People Chapter 5: Populations and Sampling Chapter 6: Narrative, Epistemology and Language Chapter 7: Interpretation, Transcription and Translation: Representation in Research Chapter 8: The Impact of Information and Communication Technologies on Research with Deaf People Chapter 9: (in)Conclusion

Reflections on Validity and Epistemology in a Study of Working Relations between Deaf and Hearing Professionals

In this article, a research study that examined the working relationships between Deaf and hearing professionals in health and educational services in the United Kingdom is addressed. These service providers worked in bilingual organizations where both British Sign Language and English were used and in which Deaf people’s identity as a cultural-linguistic minority was accepted. The focus of this article is on issues of validity and epistemology that arose for the Deaf and hearing research team in the course of this study. In particular, it examines the influence of identity attributions on the research process for researchers operating within a context of historical oppression, minority language use and legitimization of research knowledge, and challenges to the interpretative analysis used in the study that arose from the dynamics of majority-minority power relations in the wider social world.

The British Sign Language Versions of the Patient Health Questionnaire, the Generalized Anxiety Disorder 7-Item Scale, and the Work and Social Adjustment Scale

The present study is aimed to translate 3 widely used clinical assessment measures into British Sign Language (BSL), to pilot the BSL versions, and to establish their validity and reliability. These were the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder 7-item (GAD-7) scale, and the Work and Social Adjustment Scale (WSAS). The 3 assessment measures were translated into BSL and piloted with the Deaf signing population in the United Kingdom (n = 113). Participants completed the PHQ-9, GAD-7, WSAS, and Clinical Outcomes in Routine Evaluation–Outcome Measure (CORE-OM) online. The reliability and validity of the BSL versions of PHQ-9, GAD-7, and WSAS have been examined and were found to be good. The construct validity for the PHQ-9 BSL version did not find the single-factor solution as found in the hearing population. The BSL versions of PHQ-9, GAD-7, and WSAS have been produced in BSL and can be used with the signing Deaf population in the United Kingdom. This means that now there are accessible mental health assessments available for Deaf people who are BSL users, which could assist in the early identification of mental health difficulties.

Deaf people with mental health needs in the criminal justice system: a review of the UK literature

In this paper the term Deaf is used of a group of people who use sign language, who come into contact with the criminal justice system in the UK, and for whom mental health needs are associated with their offending behaviour. It critically reviews the existing literature regarding evidence of the prevalence and characteristics of this group drawing on a range of contexts: prisons, high-security services, specialist mental health services, and the police and courts. Particular attention is paid to the relationship between deafness, sign language use, mental disorder and unfitness to plead. Also, consideration is given to the extent to which a limited range of linguistically appropriate disposals for Deaf mentally disordered offenders may account for their twelve-times-higher prevalence in the high-security population than in the general population. Finally, the clinical characteristics of this population are discussed in relation to a range of psycho-social consequences of Deafness and sign language use in the UK today.

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 childs 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.

The design and validation of a parent-report questionnaire for assessing the characteristics and quality of early intervention over time

This article concerns a parent-report repeat questionnaire to evaluate the quality of multiprofessional early intervention following early identification of deafness. It discusses the rationale for the design of the instrument, its theoretical underpinnings, its psychometric properties, and its usability. Results for the validity and reliability of the instrument are based on completion by 82 parents. The questionnaire is divided into four sections. “The description of the structure of professional services” demonstrated good face and content validity; the “content of intervention scale” yielded high internal consistency (Cronbachs α = 0.88) and reliability (6-month test–retest correlations, rho = 0.88, r = .68; 12-month test–retest correlations, rho = 0.60, r = .82); the “process of intervention” scale yielded high internal consistency (Cronbachs α = 0.93) and high reliability on test–retest administration (6-month test–retest correlations, r = 0.64; 12 month test–retest correlations, r = .82); and the short “overall impact” questions were answered well. The Trait Emotional Intelligence Questionnaire was used to control for influence of parental disposition on ratings of quality of intervention. Evaluating the goodness of fit between early intervention and parental priorities/values is discussed as a vital component in improving child and family outcomes.

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.