What are the perspectives of adolescents with Down syndrome about their quality of life? A scoping review

Abstract

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.

Predictors of individual quality of life in young people with Down syndrome.

“…The lowest scores were observed in self-determination and social inclusion, and this is despite the importance of personal autonomy and social participation (Scott et al, 2014;Sheridan et al, 2020;van Gameren-Oosterom et al, 2011) in people's lives. The low scores could be explained by possible overprotection and the lack of opportunities experienced by people with DS (Callus et al, 2019;Polo et al, 2020), by their family's lack of time to facilitate community participation (Shields et al, 2020), and by the lack of supports, adaptations, and programs to forge self-determination skills and promote effective social inclusion Scott et al, 2014).…”

“…Even so, it should be noted that the views of family members and other close contacts when assessing the QoL of people with ID is not only common (e.g., Shields et al, 2018; Xanthopoulos et al, 2017) but also important (Schalock et al, 2021), particularly when dealing with early childhood. To address this limitation, future research should focus on developing a self-report version that enables young people with DS to give their own views on their QoL (Berástegui & Corral, 2020; Palomba et al, 2020; Sheridan et al, 2020). Third, the results of this study show relationships between different predictor variables and QoL scores, but causal relationships were not established.…”

“…From a review of the literature, it is clear that even if the concept of QoL has become a reference framework for the provision of supports and services to people with intellectual and developmental disability (IDD; Gómez et al, 2021; Verdugo et al, 2021), its conceptualization and application for people with DS have received little attention (Gómez, Verdugo, et al, 2020; Lee, Knafl, et al, 2021; Lee, Knafl, & Van Riper, 2021; Sheridan et al, 2020; Xanthopoulos et al, 2017). The few studies that exist on the QoL of people with DS focus primarily on the QoL of their parents (e.g., Ivins-Lukse & Lee, 2021; Pasqualucci-Ronca et al, 2019; Senses Dinc et al, 2019) or on the more limited construct of health-related quality of life (HrQoL; e.g., Katsiana et al, 2020; Rofail et al, 2017; Shields et al, 2018; Xanthopoulos et al, 2017).…”

Measurable Indicators of CRPD for People with Intellectual and Developmental Disabilities within the Quality of Life Framework

“…As shown in Table 3 , five of the studies named, applied or proposed specific measurement tools to assess QOL (QOL-Q, Integral Scale, Gencat Scale, Personal Outcomes Scale, Personal Wellbeing Index), self-determination (AIR Self-Determination Scale), or rights (Rights of Persons with Disabilities ad hoc scale). Only one study used qualitative instruments in the form of focus groups and in-depth interviews [ 30 ]. While all of these papers referred to a QOL conceptual framework as a way of evaluating or monitoring the CRPD (Articles 31 and 35), some also focused on other CRPD Articles, the most common being ( n = 2) Article 7 (children with disabilities), Article 19 (living independently and being included in the community), and Article 24 (education).…”

Parental Stress, Familial Burden and Quality of Life in Parents of Children with Down Syndrome

“…The parental stress has deleterious effects on the whole family including children and overall family system (Staunton et al, 2020) The result of a study showed that the parents of children with no neurodevelopment problem had higher marital intimacy than the parents having children with Down Syndrome (Carrada et al, 2019). The research also revealed high quality of life among parents of healthy children instead of parents of children with Down Syndrome (Sheridan et al, 2019). It has been also indicated in our findings that quality of life has been disturbed in the parents having children with Down Syndrome.…”