Quality of Life of Adults with Down syndrome in Virginia

Abstract

Background: Quality of Life (QOL) has been developing in the field of intellectual development disability since the early 1980s, and ever since there have been research, models, and theoretical constructs along with many recommendations. Ignored in its early development, QOL is now seen as important for support and intervention. Down syndrome is the most common occurring chromosomal condition-one in 700 babies in the USA is born with it. Limited research has been conducted to study quality of life of adults with DS. The present study aims to describe the quality of life of adults with DS in Virginia. Method:Qualitative approach was used to capture the "lived experience" from the perspective of those who live it and create meaning from it. This qualitative study investigated experts' and parents' thoughts and experiences of the adequacy of social service programs in Virginia which included health, rehabilitation, education, employment, and nutrition. Individual face-to-face or telephone interviews were conducted with five experts and five mothers of adult, aged 23 or older with DS. The interviews were analysed using content analysis.Results: Indicated that from a service program perspective (health, rehabilitation, education, employment, nutrition), there is a discrepancy between presented services and unmet needs, namely shelter housing, recreation programs and limitations of City-University Energy-saver (CUE) buses. Conclusion: Adults with DS are considered to have a low quality of life. This study illuminates four new insights yet there remain many challenges into acceptance, marriage, end of life and the present law concerning individuals with DS. The emerging question is: Does quality of life of adults with DS in Virginia depend on their acceptance into society, marriage, solving employment problems or the law on guardianship? Jou rn a l o f D own S y n d r o m e & Ch ro m o s o m e Abn o rm a li ti es RehabilitationAll adults had received service programs like speech or physical or occupational therapies, or infant stimulation program when they were young, and participants found these programs very useful. During Citation: Allahyari T, Wolf-Branigin M (2018) Quality of Life of Adults with Down syndrome in Virginia. J Down Syndr Chr Abnorm 4: 128.

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

“…Four studies obtained self-reports with minimal support from the proxies [ 70 – 73 ]. Eleven studies collected proxy reported QoL from caregivers [ 74 – 84 ] and 16 from a combination of self and proxy reports [ 85 – 100 ].…”

“…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 ].…”

“…Parents, especially mothers, played an important role in adults with DS in encouraging them to continue their education. For example, four studies reported that parents advocated for the need for educational services and programs for adults with DS [ 62 , 74 , 78 , 100 ]. Three studies reported that family and school support are important factors for self-development through active participation in extracurricular activities [ 95 , 98 , 100 ].…”

“…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 ]. Five studies reported that some adults with DS demonstrated their ability to live independently such as catching a bus [ 93 ], taking responsibility for personal hygiene, house cleaning, laundry, cooking, paying bills, budgeting, taking medication and using public transport [ 63 , 64 , 97 ] and making decisions [ 65 ].…”

Intervention for Treating Depression in Parents of Children with Intellectual Disability of Down’s Syndrome: A Sample of Nigerian Parents

“…DS occurs approximately in 1 out of 700 live births and predominantly in 15% of children aged 3-17 (American Psychiatric Association, 2013). Children with this characteristic condition experience deficiency in intellectual capacity (Allahyari & Wolf-Branigin, 2018), limitations in intellectual and adaptive behaviors (Fidler et al, 2009;Schalock et al, 2007), difficulty in problemsolving (Fidler et al, 2011), shortened life spans (Allahyari & Wolf-Branigin, 2018), language expression and motor development impairment (Daunhauer & Fidler, 2011;Mbugua et al, 2011).…”