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.
Background While there is a recognition in the established literature of the need to investigate life-course factors in the construction of exclusion from social relations and gender pathways, how those pathways intersect with the relocation and migration histories of older people has not been sufficiently explored. Thus, illuminating this intersection is important in understanding major turning points in people’s social connections, and this has particular significance in Ireland given that most older people are likely to have experienced some form of migration. Methods Thirty in-depth semi-structured qualitative telephone interviews with older men and women in Ireland, as part of a wider GENPATH study into exclusion from social relations. Results There is preliminary evidence to suggest that relocation and migration has a differential impact on the social relations of men and women over their life course. The findings reflect the common phenomenon in Ireland where it was usual for women to move into new communities upon marriage. Also, women’s experience of within-country relocation was often linked to their husband’s working-life trajectories, whereas employment was the motivation behind this form of relocation for the male participants. For those who had experienced emigration, returning to Ireland was driven by a desire to return to their place of origin or to retire in Ireland to be nearer to family in later life. Conclusion Findings point to the intersection between relocation and migration life histories and gendered pathways to exclusion from social relations. The impact on social connectivity is experienced differently at different points across the lives of these older men and women. Consideration needs to be given to gender normative roles and structural influences to gain a greater understanding of how these intersect with migration.
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