The everyday lives of children with disabilities are not well understood, with few studies exploring how participation in everyday life is conceptualized and given meaning. The overall aims of this study were, first, to explore parental views of their children’s participation and, second, to identify barriers and facilitators in relation to participation in everyday activities. A qualitative research strategy was adopted, whereby parents of children with Down syndrome (DS) aged 6–12 years were selected using purposive sampling. Five interviews with seven participants were audio-recorded and analysed using a framework approach whereby the overall research aims guided the analysis. Analysis of the data identified two main themes and seven sub-themes. The first theme was the value of participation. Parents reported that through participation in activities, their children developed skills that in turn enhanced their well-being and sense of belonging. The second theme was barriers and facilitators of participation, which included four subthemes: child factors, attitudes and views of others, modifications to the environment and logistical issues. Findings also illustrate how the child and his/her physical, social and attitudinal environments are inherently intertwined, with parents identifying the influence of several interacting factors on their child’s participation in everyday activities. This study supports the view that while frameworks like the ICF have an important role in understanding disability, they need to be supplemented with personal experiences of children and others in their lives. Speech and language therapists need to consider activities and participation both from the perspective of factors within children themselves and also from the point of view of barriers and facilitators in the children’s environment.
Tailoring the delivery of disability services to the preferences and requirements of service users allows for more effective partnerships. The aim of this research was to explore parents' perceptions and the expectations of their child's speech-language pathology (SLP) within an intellectual disability service. Parents of school-aged children with intellectual disability who received a SLP service in Ireland participated in the research: 17 parents participated in focus groups and 103 parents answered questionnaires. The core themes from the focus groups, which subsequently informed the questionnaire design, were: experience of the SLP service, communication difficulties, expectations of the SLP service, and future developments. The key questionnaire results indicated that parents viewed their SLP as the "expert" and viewed school-based and clinic-based services differently. Parents were more likely to believe that their child would always need therapy if they received a school-based service. Whereas, parents were more likely to think that their child's speech was improving as they got older and were more likely to be aware of therapy activities if therapy was clinic-based. The findings have implications for the delivery of SLP services suggesting that clarification of parents' roles and expectations are required.
Purpose: An interdisciplinary research group was established to investigate current and future service provision for children with (Central) Auditory Processing Disorders (C)APD in the Republic of Ireland. The aim of phase one was to identify current awareness and knowledge of (C)APD among the relevant professionals in Ireland including level of service provision, if any, available for children with (C)APD. The aim of phase two was to explore the initial steps required to develop an integrated service for children presenting with (C)APD.Method: A quantitative design was used in phase one and 520 surveys were distributed to speech and language therapists (SLTs), audiological scientists (ASs), and educational psychologists (EPs). A qualitative participative design was used in phase two.Results: There was a 53% response rate to the survey. The main findings from phase one were that all professional groups considered themselves to be inadequately informed and lacking in skills for (C)APD assessment or intervention. In phase two, ninety-eight participants with backgrounds in SLT, AS, EP and occupational therapy engaged in interdisciplinary discussions to identify the first steps required to develop a (C)APD service.Conclusion: All professional groups considered that they were inadequately informed about (C)APD and the first steps required to develop services in Ireland include: the promotion and development of interdisciplinary teamwork and education, a need for additional resources, a clearer understanding of the definition of (C)APD, and evidence-based assessment and management of this condition.Although (C)APD was first discussed as a condition by Jack Katz in the mid 1960s, there has been growing international evidence of (C)APD as a clinical entity in the past twenty years. This recognition is evident in the recent publication of the Clinical Practice Guidelines by the American Academy of Audiology (AAA, 2010). These guidelines provide evidence-based recommendations for the diagnosis, treatment and management of children and adults with (C)APD. The AAA (2010) states that (C)APD refers to difficulties in the perceptual processing of auditory information in the central nervous system and the neurobiological activity that underlies that processing.There have been a number of studies that have investigated professionals' preparation for assessment, diagnosis and management of (C)APD (Chermak, Silva, Nye, Hasbrouch & Musiek, 2007;Chermak, Traynham, Seikel & Musiek, 1998;Hind, 2006). In the United States (US), Chermak et al. (1998) investigated professional preparation for assessment and diagnosis of (C)APD among audiologists. The impetus for this research was that there had been advances in the understanding of the workings of the central auditory nervous system. There had also been advances in the technological tools that could be used in the assessment of the central auditory system. They surveyed 500 randomly selected audiologists from membership of the American Academy of Audiology (AAA). There was a 3...
The Republic of Ireland is an island situated in North West Europe inhabited by 4.6 million people with 2.8% aged between 0-4 years with a disability (Central Statistics Office, 2012).The Irish Government funds the Irish health services, which in turn directly and indirectly funds disability services. Education and Disability legislation have developed in parallel with an apparent increasing congruence with both moving towards a rights based approach. Today, Early Intervention disability services are delivered by both statutory and non-government agencies with wide variation and no national consistency in service provision. Some 2 components of the Developmental Systems Approach can be discerned in Irish service provision and these include: screening, access, comprehensive interdisciplinary assessment and early childhood programs. However, assessment of families, development and implementation, monitoring and outcome evaluation, and transition planning are not as identifiable. Guided by legislation and organisational restructuring, Early Intervention provision in Ireland is in a state of flux with an emphasis on developing national uniformity of family centred Early Intervention services.
Accessible summary• This study looked for information about the quality of life of adolescents with Down syndrome.• We found two studies about quality of life that included the voice of the adolescent with Down syndrome. Most of the research includes parents' voices. Parents' views are important, but we need to also include adolescents with Down syndrome in research about their lives. • Friends, family and independence are important to adolescents with Down syndrome. • More information on quality of life is needed to help us understand more about their individual needs. Abstract Background: There is a wealth of research on adolescents with Down syndrome (DS) covering a large range of topics such as obesity, speech and language, education and health-related quality of life. However, for quality of life, much of the available literature for adolescents with DS relies on parent proxy reporting. This results in more research on parent's perspectives rather than from the individuals with DS themselves. Aim: This study aimed to examine the literature to identify the literature that included the voice of adolescents with DS in research about quality of life. It aimed to address the research question: What evidence exists in relation to the perspectives of adolescents with DS about their quality of life? Method: A scoping review allowed for an extensive range of research and nonresearch material to be gathered. Search terms were identified, followed by searches of five electronic databases, Google scholar and Lenus (Irish Health Repository). Two researchers conducted the review. Studies were selected through inclusion/exclusion criteria. A chart summarised information from the selected studies.Results: A total of 596 articles were marked for title and abstract screening. Fortyfive articles were included for full-text review. Forty-three of these met exclusion criteria, resulting in two articles which included the voices of adolescents with DS themselves. For adolescents with DS, participation socially and in their communities was important as well as friendships, family relationships and functional independence. These themes need to be further explored. | 99 SHERIDAN Et Al. How to cite this article: Sheridan C, OMalley-Keighran M-P, Carroll C. What are the perspectives of adolescents with Down syndrome about their quality of life? A scoping review. Br J Learn Disabil. 2020;48:98-105. https ://doi.
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