The perspective of emerging adults with Down syndrome – On quality of life and well-being

Jevne, Kjersti Wessel; Kollstad, Marit; Dolva, Anne‐Stine

doi:10.1177/17446295211030097

Cited by 7 publications

(19 citation statements)

References 27 publications

(46 reference statements)

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“…A total of 24 studies focused on the personal development of adults with DS. Four self-reported [ 62 , 64 , 65 , 68 ], two parent-proxy reports [ 74 , 76 ] and four studies using both self-and proxy-reported [ 90 , 93 , 95 , 100 ] examined the educational status of adults with DS who had attended mainstream schools and further education colleges. Two studies [ 76 , 90 ] reported that adults with DS were in their late 30s at the time of the study and in school, with 79% reading and/or look through books at least once a week [ 76 ].…”

Section: Resultsmentioning

confidence: 99%

“…Ten studies [ 62 , 64 , 65 , 68 , 82 , 84 , 86 , 88 , 95 , 100 ] found that adults with DS demonstrated reading and writing skills, four studies [ 62 , 68 , 84 , 88 ] reported numeracy skills, and four studies [ 62 , 64 , 94 , 95 ] reported on computer skills. Female adults with DS showed a significant difference in literacy and numeracy skills compared to males, while male adults with DS scored slightly higher in concept attainment and money skills [ 88 ].…”

Section: Resultsmentioning

confidence: 99%

“…Three studies reported that the use of ICT by adults with DS resulted in a significant increase in their well-being, which was associated with autonomy and an improvement in perceptions of self-determination in everyday life, e.g., daily tasks, contact with family and friends, using useful apps, phone calendar, social media and setting up reminders [ 64 , 73 , 85 ]. Thirteen studies showed that the freedom to have their own rules, to live independently, and move out of home without the influence of their parents were paramount and considered a symbol of adulthood to adults with DS [ 62 – 64 , 68 , 74 , 76 , 88 , 90 , 91 , 93 , 95 , 97 , 98 ].…”

Section: Resultsmentioning

confidence: 99%

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Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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Background As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. Objective Using Schalock and Verdugo’s multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. Methods Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. Conclusion This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. International prospective register of systematic reviews registration number CRD42019140056.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

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“…The main limitation of the study is that the evaluation of QoL relied on a parent-report instrument and that we missed other sources of information, for example self-or teacherreports. However, self-report instruments or interviews used to measure the QoL in individuals with ID, included DS, mainly target adult age (75)(76)(77). Unfortunately, the use of parent/caregiver-report instruments seems to be the only way to explore the QoL in children with moderate or severe ID.…”

Section: High Quality Of Life Is Perceived In Children With Good Anal...mentioning

confidence: 99%

Parental perspectives on the quality of life of children with Down syndrome

et al. 2022

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Down Syndrome (DS) is the most common chromosome abnormality and the most frequent cause of developmental delay/intellectual disabilities in children. Although the investigation of the quality of life (QoL) is crucial in children with DS, relatively poor attention has been paid to this topic. The current study aimed to evaluate parent-reported QoL in a group of children with DS and identify children's individual and clinical features associated with different levels of QoL. We included in the study 73 children with DS (5–12 years) and investigated the parent-reported levels of QoL by means of the Pediatric Quality of Life Inventory. Cognitive level and the presence of behavioral difficulties were also evaluated. The overall parent-reported QoL of children with DS was high; emotional functioning was the domain with the highest level of QoL. Moreover, parents perceived low levels of QoL in children who exhibited low IQ, worse analogical reasoning, worse adaptive skills, more frequent challenging behaviors, more ritualistic/sameness behavior and more autistic symptoms. No differences emerged for family variables, namely parental education and employment, between the two groups with high and low QoL, as perceived by parents. The understanding of cognitive and behavioral factors - such as analogical reasoning, socio-communication abilities and challenging behaviors - related with different degrees of QoL in children with DS is crucial for the development of effective strategies to promote the improvement of the QoL.

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“…However, less is known about how individuals with DS use these foundational skills during social interactions in later childhood and adolescence. This lack of information represents a critical gap in the literature, given the range of individual differences in outcomes related to social development, such as independent living, employment, community participation, and quality of life, that have been reported among adults with DS ( Iarocci et al, 2008 ; Scott et al, 2014 ; Jevne et al, 2022 ; Loveall et al, 2022 ). One major barrier is that few measures of social skills have been established in this population ( Esbensen et al, 2017 ; Schworer et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Using the Social Skills Improvement System (SSiS) Rating Scales to assess social skills in youth with Down syndrome

et al. 2023

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Introduction and MethodsThis study provides preliminary data on the Social Skills Improvement System (SSiS) Rating Scales Parent Form to measure social skills in a sample of 124 children and adolescents with Down syndrome (DS) ages 6–17 years.ResultsOverall, participants demonstrated relatively mild symptoms, with the sample’s average standard score falling within 1 standard deviation from the mean of the normative sample for the social skills (M = 92, SD = 15) and problem behaviors (M = 104, SD = 12) domains (normative sample M = 100, SD = 15 for both domains). However, a wide range of scores was observed across the sample for the composite and subscale scores. Differential patterns were also observed by subscale. For some subscales (i.e., Cooperation, Assertion, Responsibility, Engagement, Externalizing, Hyperactivity/Inattention, and Autism Spectrum), a disproportionate number of participants scored in the below average (i.e., lower levels of social skills) or above average (i.e., more symptomatic in problem behaviors or autism spectrum) range relative to the normative sample; for other subscales (i.e., Communication, Empathy, Self-Control, Bullying, and Internalizing), participants’ score distribution aligned more closely to that of the normative sample. SSiS composite scores correlated in the expected directions with standardized measures of autism characteristics, executive function, and expressive language.DiscussionThis study provides some of the first evidence validating the use of the SSiS in youth with DS, filling a gap in standardized measures of social functioning in this population.

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The perspective of emerging adults with Down syndrome – On quality of life and well-being

Cited by 7 publications

References 27 publications

Quality of life in adults with Down syndrome: A mixed methods systematic review

Quality of life in adults with Down syndrome: A mixed methods systematic review

Parental perspectives on the quality of life of children with Down syndrome

Using the Social Skills Improvement System (SSiS) Rating Scales to assess social skills in youth with Down syndrome

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