Journal du syndrome de Down et des anomalies chromosomiques
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Quality of Life of Adults with Down syndrome in Virginia

Talat Allahyari and Michael E. Wolf-Branigin

Background: Quality of Life (QOL) has been developing in the field of intellectual development disability sincethe early 1980s, and ever since there have been research, models, and theoretical constructs along with manyrecommendations. 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 describethe 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 itand create meaning from it. This qualitative study investigated experts’ and parents’ thoughts and experiences of theadequacy of social service programs in Virginia which included health, rehabilitation, education, employment, andnutrition. 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, recreationprograms 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 insightsyet there remain many challenges into acceptance, marriage, end of life and the present law concerning individualswith DS. The emerging question is: Does quality of life of adults with DS in Virginia depend on their acceptance intosociety, marriage, solving employment problems or the law on guardiansh