SoundSpace Online: The Development of an Online Resource About Hearing Loss.

PURPOSE: The Internet has been a growing source of health information on hearing loss, but the information provided often varies in quality, readability, and usability. Additionally, the information is provided across a wide range of domains, making access challenging to those who need it. This research forum article describes the development of a new website, SoundSpace Online (Ng, Archbold, Mayer, & Mulla, 2014), which aims to tackle these issues and bring together information and resource s f or all those concerned with hearing loss. METHOD: The SoundSpace Online website's current developmental state was reached through the following methods: (a) discussions with a group of individuals that included experts in e-learning, education, research, and hearing loss; (b) interviews with different target groups (e.g., users, families, and professionals); and (c) collaboration with contributors. RESULT: The website is structured to become a g o-to resource on various topics related to hearing loss, providing accurate, comprehensive, and functional information and resources at varying levels of complexity for the intended users. CONCLUSION: The literature and the range of interest have illustrated the need for an up-to-date website providing information and resources on hearing loss. Challenges include monitoring and keeping the website up to date; in this article, a plan of action is discussed. The website is currently in development, with plans for a launch in the near future.

Cochlear implantation in children with complex needs: the perceptions of professionals at cochlear implant centres.

OBJECTIVE: To explore the views of cochlear implant centre teams about the process of referral, assessment and rehabilitation for children with complex needs. METHODS: An on-line survey of cochlear implant centres in the UK and in the Netherlands was carried out, with both quantitative and qualitative questions. The survey was designed and piloted by four professionals in each country, experienced in working in cochlear implant services, and with complex children. The open qualitative responses were analysed independently for the emergent themes. RESULTS: Seven centres from Netherlands and eight from UK responded. The proportion of children reported with complex needs ranged from under 10% to between 40 and 60%. Children with complex needs were more likely to be later referred than the norm, and to take longer to assess. There was little agreement about the assessments used prior to implantation, or in follow-up. The most commonly seen additional disability was visual, followed by motor/physical challenges and autistic spectrum disorders. The most reported challenge was assessment, followed by parental expectations, and wearing the system. The least reported concern was educational management. The major goal was seen to be hearing and sensory input, rather than speech and language attainment. All centres commented on the importance of parental observation. CONCLUSION: There is a need for a consensus on the assessment of these children, with the development of more objective parent led observation measures to collect long-term data across centres. Closer collaboration with educators, particularly those with other expertise, would facilitate long-term management and asssessment. Data logging, now available, will help monitor wearing and use of system.

Exploring views on current and future cochlear implant service delivery: the perspectives of users, parents and professionals at cochlear implant centres and in the community.

OBJECTIVE: The objective of this survey was to explore the perceptions of implant users/carers and professionals across the UK about current and future cochlear implant service delivery and the challenges. METHODS: Data were collected via an online questionnaire consisting of totally 22 questions. The questionnaire contained both open- and close-ended questions. RESULTS: Totally, seven hundred and forty-eight responses were received. In spite of the wide range of respondents, there was a broad consensus of opinion across groups. The majority of participants were satisfied with the service they currently receive, but wanted some changes. They reported their current experience of implant services to be mainly driven by decisions made by the implant team. For the future, they preferred the service to be mainly driven by decisions made jointly by the team and the user and/or parent/carer. The majority of participants wanted the cochlear implant services to be integrated into local audiology and other services such as education. Restrictions on number of candidates funded and political decisions and issues were seen as major challenges. Qualitative analysis of the open-ended responses supported the questionnaire responses. CONCLUSIONS: This research highlighted the benefits and limitations of the current cochlear implant service delivery as well as the potential implications for the long term. While respondents were generally happy with the current cochlear implant service provision, they expressed some concerns about the long-term sustainability and management, wanting integration into the local services, and more involvement of parents and users in decisions.

The experiences of adults assessed for cochlear implantation who did not proceed.

OBJECTIVE: The objective of this study was to explore, by interview, the experiences of adults who have undergone assessment for cochlear implantation and were considered unsuitable. METHODS: Ten adult participants were interviewed. Interviews were transcribed and thematic content analysis was carried out to analyse them. Six main themes and 16 subthemes were identified. RESULTS: The findings from the study demonstrate that adults who underwent the assessment for cochlear implantation were significantly impacted socially and emotionally as well as at work as a result of their hearing loss. Most participants found the speech testing in the assessment process to be a poor representation of hearing challenges in everyday life. A range of expectations from implantation were noted; the most common one being improvement in speech and communication. The management of these expectations needed attention. After the refusal, participants reported a lack of ongoing support and advice. A number of other suggestions regarding the actual assessment process and aspects around it were highlighted. CONCLUSIONS: A need to revise audiological criteria and modify speech testing methods to resemble hearing challenges in everyday life is highlighted. The impact of hearing loss on social, emotional, and work aspects need to be addressed thoroughly. An awareness of available technology and other coping strategies should be part of the assessment protocol. Uniformity across different centres in terms of providing information pre-assessment needs to be achieved. Consideration of the individual and his hearing and communication needs in addition to formal hearing assessments before deciding/refusing implantation needs to be developed.