Social Psychiatry and Psychiatric Epidemiology

, Volume 49, Issue 9, pp 1455–1465 | Cite as

Relationship between family quality of life and day occupations of young people with Down syndrome

  • Kitty-Rose Foley
  • Sonya Girdler
  • Jenny Downs
  • Peter Jacoby
  • Jenny Bourke
  • Nick Lennox
  • Stewart Einfeld
  • Gwynnyth Llewellyn
  • Trevor R. Parmenter
  • Helen LeonardEmail author
Original Paper



To explore relationships between family quality of life, day occupations and activities of daily living (ADL) of young persons with Down syndrome.


Data were collected from 150 families with a young person with Down syndrome aged 16–30 years participating in the Down syndrome “Needs Opinions Wishes” database. Data described the young person’s characteristics (including functional abilities, behaviour and day occupations) and family characteristics (including income, family and community supports and quality of life).


Compared to families of young people attending open employment, families of young people participating in sheltered employment tended to report poorer family quality of life, after adjusting for personal characteristics, behaviour and income (coeff −6.78, 95 % CI −14.38, 0.81). Family supports reduced this relationship (coeff −6.00, 95 % CI −12.76, 0.76). Families of young people with greater functioning in ADL reported better family quality of life regardless of personal and environmental factors (coeff 0.45, 95 % CI 0.05, 0.85) and inclusion of family factors such as family supports reduced this association (coeff 0.29, 95 % CI −0.10, 0.67).


Participation of young people with Down syndrome in open employment may positively influence family quality of life. Services that facilitate functioning in ADL and assist the families in accessing suitable family supports have the potential to positively influence family quality of life.


Intellectual disability Participation Employment Quality of life 



We thank the families for their participation and the Disability Services Commission of WA for facilitating the distribution of questionnaires. We also gratefully acknowledge the initial seed funding from Australian Research Alliance for Children and Youth and the ongoing funding provided by the Australian Research Council. #LP0989847 for the project ‘Leaving School: Maximising participation and life outcomes in youth with an intellectual disability transitioning from secondary school to adult life’. We would also like to acknowledge all our industry partners: Down syndrome WA, Disability Services Commission and Department of Education WA and the contributing investigators on the grant: Carol Bower, Bruce Tonge, Vivienne Riches and Nicholas de Klerk.

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical approval

Ethical approval for the study was obtained from the Ethics Committee of the Women’s and Children’s Health Services in Western Australia.


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Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Kitty-Rose Foley
    • 1
    • 2
  • Sonya Girdler
    • 1
    • 2
    • 3
  • Jenny Downs
    • 1
    • 4
  • Peter Jacoby
    • 1
  • Jenny Bourke
    • 1
  • Nick Lennox
    • 5
  • Stewart Einfeld
    • 6
    • 7
  • Gwynnyth Llewellyn
    • 8
  • Trevor R. Parmenter
    • 9
  • Helen Leonard
    • 1
    Email author
  1. 1.Telethon Institute for Child Health ResearchThe University of Western AustraliaPerthAustralia
  2. 2.School of Exercise and Health SciencesEdith Cowan UniversityPerthAustralia
  3. 3.School of Occupational Therapy and Social WorkCurtin UniversityPerthAustralia
  4. 4.School of Physiotherapy and Exercise ScienceCurtin UniversityPerthAustralia
  5. 5.School of Medicine, Queensland Centre for Intellectual and Developmental DisabilityUniversity of QueenslandBrisbaneAustralia
  6. 6.Faculty of Health SciencesUniversity of SydneySydneyAustralia
  7. 7.Brain and Mind Research InstituteUniversity of SydneySydneyAustralia
  8. 8.Family and Disability Studies, Faculty of Health SciencesUniversity of SydneySydneyAustralia
  9. 9.Sydney Medical SchoolUniversity of SydneySydneyAustralia

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