The Lived Experience and Legacy of Pragmatics for Deaf and Hard of Hearing Children.

In this article, we discuss deaf and hard of hearing (DHH) children's pragmatic difficulties and strengths from within the lived experiences of 5 hearing parents of DHH children and 5 DHH adults (one of whom is also a parent of a deaf child). We define lived experience as both a specific form of knowledge (first-hand stories from everyday life) and a unique way of knowing (reflecting and telling from insider perspectives). The parents and DHH adults involved coauthored the article alongside 2 experienced researcher-practitioners. Key themes include what pragmatic challenges feel like for a DHH person, why they arise, how they might result in longer-term consequences (such as implications for well-being) that can continue into adulthood, what might be pragmatic strengths in this population, and what might be done to ameliorate pragmatic difficulties. We end the article with reflections on the significance of individual parents and DHH adults in the coproduction and execution of research on this topic and make suggestions for future directions of inquiry.

How do we know what we don't know? Exploring Deaf people's experiences of supporting their Deaf family member living with dementia.

Deaf sign language users living with dementia and their carers, some of whom are Deaf, routinely face everyday barriers in accessing information, support (both formal and informal) and services. The familial care situation is further complicated given that most Deaf people will choose a life partner who is Deaf and most Deaf couples will have hearing children. This study focussed specifically on the everyday experiences of Deaf carers and the impact of caring for a loved one with dementia. Drawing on data from a wider consultation about dementia care, three Deaf carers were directly interviewed in British Sign Language by a Deaf researcher about their everyday experiences of care, support, and services. Thematic analysis focussed on: access is more than the provision of interpreters; effective care for the carers; and unknowing risk taking. Findings demonstrate the multifaceted effects of barriers to knowledge and information when the care partner is also Deaf, the urgent need for effective support for Deaf carers and unrecognised safeguarding concerns that are a result of lack of access to forms of basic knowledge about living with someone with dementia and potential coping strategies. Nonetheless, the participants demonstrated novel solutions and resilience in the face of these multiple challenges. Implications are drawn for future targeted services to supported Deaf carers of people affected by dementia.

Parental Conceptualizations of Autism and Deafness in British Deaf Children.

The co-occurrence of childhood deafness and autism raises complex challenges for diagnosis and family support. In this article, we explore with hearing and Deaf parents their observations of the interaction between deafness and autism and identify how the intersections of deafness and autism are conceptualized in everyday life. Eight parents participated (two of whom were Deaf BSL users) in semi-structured interviews in either BSL or spoken English. Data analysis was underpinned by a phenomenological approach in the hermeneutic tradition. Findings are discussed in terms of parents' perceptions of the relevance of deafness to their understanding of autism for their particular child, the effects of autism on sign and spoken language development and the relationship between deafness and autism in terms of their own and others' attributions of their children's characteristics. The significance of the findings for parental contributions' to diagnostic assessment and the tailoring of family support are considered.

Authentic public and patient involvement with Deaf sign language users: It is not just about language access.

This article concerns Public and Patient Involvement practice with Deaf people who are sign language users. It draws on the experience of public and patient involvement in a project concerning Deaf people's lived experience of dementia and focusses on: (i) creating the conditions of trust in circumstances of unrecorded knowledge; (ii) being a community insider as a necessary but not sufficient condition without public and patient involvement and (iii) community consultation as influencing positive public and patient involvement practice. It sets out a series of recommendations for authentic public and patient involvement practice with Deaf sign language users linked to each of these themes before considering more generally barriers to Deaf people's involvement in public and patient involvement in health and social care research.

Challenges of Realising Patient-Centred Outcomes for Deaf Patients.

In general populations, it has been recognised that patients play a key role in the quality of their own healthcare. However, the idea of realising patient-centred outcomes for the signing Deaf community, who experience the world in a visual way, raises some challenging issues that are rarely acknowledged. Using published research and translational health projects involving Deaf people both in the UK and internationally, this article discusses the challenges of realising patient-centred outcomes for Deaf people who are sign language users. The discussion includes an examination of: barriers to accessing healthcare for Deaf people; the impact of an insufficient acquisition of knowledge about health-related issues; Deaf people's limited fund of information; not recognising Deaf people's values and citizenship rights; and challenges in gathering Deaf people's reported outcomes. We contend that without including Deaf people in shaping the healthcare experience for them, whether at an interpersonal level of patient engagement or at a structural level, the concept of fulfilling patient-centred outcomes for Deaf people is not achievable.

Understanding dementia: effective information access from the Deaf community's perspective.

This study concerns older Deaf sign language users in the UK. Its aim was to explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective. A purposive sample of 26 Deaf people without dementia participated in one of three focus groups facilitated directly in British Sign Language (BSL) without an intermediate interpreter. The sample was differentiated by age, role in the Deaf community, and diversity of educational attainment and professional experience. A phenomenological approach underpinned the thematic analysis of data. The findings demonstrate: (i) translation into (BSL) is a necessary but not sufficient condition to support understanding. Attention to culturally preferred means of engagement with information is vital; (ii) the content of information is best presented utilising structures and formats which cohere with Deaf people's visual cognitive strengths; and (iii) the importance of cultural values and cultural practices in raising awareness and building understanding of dementia. These include collective rather than individual responsibility for knowledge transfer and the pan-national nature of knowledge transfer among Deaf people(s). The discussion demonstrates how these specific features of effective information access and awareness building have universal implications relevant to public engagement and the promotion of general knowledge consistent with the National Dementia Strategy (England).

Understanding the personhood of Deaf people with dementia: methodological issues.

This article concerns Deaf people in the United Kingdom, who use sign language, who have a formal diagnosis of dementia and who have participated in interviews in British Sign Language (BSL) about their experience of living with dementia. We address the methodological challenges involved in enabling culturally meaningful participation in circumstances where the non-verbal is not equivalent to the non-linguistic. We demonstrate the use of interpretative narrative representation of data for purposes of cultural brokering. We explore the contribution of Deaf people's experiences and the analysis of their visual, spatial narratives to debates about personhood and the embodied self in dementia studies. Finally, we consider the significance of the situational as cultural in relation to holistic interpretation of narrative.

Dementia and the Deaf community: knowledge and service access.

OBJECTIVES: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural-linguistic status. METHODS: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18-60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18-60. Data were subjected to a thematic content analysis. RESULTS: Participants' concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia. CONCLUSIONS: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.