Skip to main content
SpringerLink
Log in

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

  • Original Paper
  • Published:
Social Psychiatry and Psychiatric Epidemiology Aims and scope Submit manuscript

Abstract

Purpose

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

Method

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).

Results

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).

Conclusions

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Turnball A, Turnball R, Erwin E, Soodak L (2006) Families, professionals, and exceptionality: positive outcomes through partnerships and trust, 5th edn. Merrill/Prentice-Hall, Upper Saddle River

    Google Scholar 

  2. Parish SL, Pomeranz A, Hemp R, Rizzola MC, Braddock D (2001) Family support for persons with developmental disabilities in the US: status and trends (Policy Research Brief). University of Minnesota, Institute on Community Integration, Minneapolis, MN

    Google Scholar 

  3. Samuel PS, Rillotta F, Brown I (2012) Review: the development of family quality of life concepts and measures. J Intellect Disabil Res 56(1):1–16

    Article  CAS  PubMed  Google Scholar 

  4. Davis K, Gavidia-Payne S (2009) The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities. J Intellect Dev Disabil 34(2):153–162

    Article  PubMed  Google Scholar 

  5. Bittles AH, Bower C, Hussain R, Glasson EJ (2006) The four ages of Down syndrome. Eur J Public Health 17(2):221–225

    Article  PubMed  Google Scholar 

  6. Fitzgerald P, Leonard H, Pikora T, Bourke J, Hammond G (2013) Hospital admissions in children with Down syndrome: experience of a population-based cohort followed from birth. PLoS One 8(8):e70401

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  7. Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, Msall M, Bower C, Leonard H (2009) Maternal physical and mental health in children with Down syndrome. J Pediatr 153(3):320–326

    Article  Google Scholar 

  8. Foley K-R, Jacoby P, Girdler S, Bourke J, Pikora T, Lennox N, Einfeld SL, Llewellyn G, Parmenter T, Leonard H (2013) Functioning and post-school transition outcomes for young people with Down syndrome. Child Care Health Dev 39(6):789–800

    PubMed  Google Scholar 

  9. Roizen NJ, Patterson D (2003) Down’s syndrome. Lancet 361(9365):1281–1289

    Article  PubMed  Google Scholar 

  10. Bittles AH, Glasson EJ (2004) Clinical, social, and ethical implications of changing life expectancy in Down syndrome. Dev Med Child Neurol 46:282–286

    Article  CAS  PubMed  Google Scholar 

  11. Jokinen NS, Brown RI (2010) Family quality of life and older-aged families of adults with an intellectual disability. J Intellect Disabil Res 49:789–793

    Article  Google Scholar 

  12. Hanley-Maxwell C, Whitney-Thomas J, Pogoloff S (1995) The second shock: a qualitative study of parents perspectives and needs during their child’s transition from school to adult life. J Assoc Pers Sev Handicaps 20:3–15

    Google Scholar 

  13. Davies MD, Beamish W (2009) Transitions from school for young adults with intellectual disability: parental perspectives on ‘life adjustment’. J Intellect Dev Disabil 34(3):248–257

    Article  PubMed  Google Scholar 

  14. Hughes C (2001) Transition to adulthood: supporting young adults to access social, employment, and civic pursuits. Ment Retard Dev Disabil Res Rev 7(2):84–90

    Article  CAS  PubMed  Google Scholar 

  15. Jahoda A, Kemp J, Riddell S, Banks P (2008) Feelings about work: a review of the socio-emotional impact of supported employment on people with intellectual disabilities. J Appl Res Intellect Disabil 21:1–18

    Article  Google Scholar 

  16. Kober R, Eggleton IR (2005) The effect of different types of employment on quality of life. J Intellect Disabil Res 49(10):756–760

    Article  CAS  PubMed  Google Scholar 

  17. Tuckerman P, Cain P, Long B, Klarkowski J (2012) An exploration of trends in open employment in Australia since 1986. J Vocat Rehabil 37:173–183

    Google Scholar 

  18. Spring B, Rosen KH, Matheson JL (2002) How parents experience a transition to adolescence: a qualitative study. J Child Fam Stud 11(4):411–425

    Article  Google Scholar 

  19. Van Cleve SN, Cannon S, Cohen W (2006) Part II: clinical practice guidelines for adolescents and young adults with Down syndrome: 12 to 21 years. J Pediatr Health Care 20(3):198–205

    Article  PubMed  Google Scholar 

  20. Winn S, Hay I (2009) Transition from school for youth with a disability: issues and challenges. Disabil Soc 24(1):103–115

    Article  Google Scholar 

  21. Knox M, Parmenter TR, Atkinson N, Yazbeck M (2000) Family control: the views of families who have a child with an intellectual disability. J Appl Res Intellect Disabil 13:17–28

    Article  Google Scholar 

  22. Timmons JC, Whitney-Thomas J, McIntyre JP, Butterworth J, Allen D (2004) Managing service delivery systems and the role of parents during their children’s transitions. J Rehabil 70(2):19–26

    Google Scholar 

  23. Foley K-R, Dyke P, Girdler S, Bourke J, Leonard H (2012) Young adults with intellectual disability transitioning from school to post-school: a literature review framed within the ICF. Disabil Rehabil 20(34):1747–1764

    Article  Google Scholar 

  24. Dyke P, Bourke J, Llewellyn G, Leonard H The experiences of parents and youth with an intellectual disability transitioning from secondary school to adult life. J Intellect Dev Disabil (in press)

  25. Hoffman L, Marquis J, Poston DJ, Summers JA, Turnball A (2006) Assessing family outcomes: psychometric evaluation of the Beach Center Family Quality of Life Scale. J Marriage Fam 68(4):1069–1083

    Article  Google Scholar 

  26. Petterson B, Leonard H, Bourke J, Sanders R, Chalmers R, Jacoby P, Bower C (2005) IDEA (Intellectual Disability Exploring Answers): a population-based database for intellectual disability in Western Australia. Ann Hum Biol 32(2):237–243

    Article  CAS  PubMed  Google Scholar 

  27. Wang M, Turnball A, Summers JA, Little TD, Poston DJ, Mannan H, Turnball R (2004) Severity of disability and income as predictors of parents satisfaction with their family quality of life during early childhood years. Res Pract Pers Sev Disabil 29(2):82–94

    Article  CAS  Google Scholar 

  28. Zuna NI, Selig JP, Summers JA, Turnball AP (2009) Confirmatory factor analysis of a family quality of life scale for families of kindergarten children without disabilities. J Early Interv 31(2):111–125

    Article  Google Scholar 

  29. Beach Center on Disability (2003) Family quality of life scale. University of Kansas, Lawrence

    Google Scholar 

  30. Dunst CJ, Leet HE (1987) Measuring the adequacy of resources in households with young children. Child Care Health Dev 13:111–125

    Article  CAS  PubMed  Google Scholar 

  31. Smilkstein G, Ashworth C, Montano D (1982) Validity and reliability of the family APGAR as a test of family function. J Fam Pract 15:303–311

    CAS  PubMed  Google Scholar 

  32. McConkey R, Walsh J (1982) An Index of Social Competence for use in determining the service needs of mentally handicapped adults. J Ment Defic Res 26(1):47–61

    CAS  PubMed  Google Scholar 

  33. Dodd P, Guerin S, McEvoy J, Buckley S, Tyrrell J, Hillery J (2008) A study of complicated grief symptoms in people with intellectual disabilities. J Intellect Disabil 52(5):415–425

    Article  CAS  Google Scholar 

  34. Guerin S, Dodd P, Tyrrell J, McEvoy J, Buckley S, Hillery J (2009) An initial assessment of the psychometric properties of the complicated grief questionnaire for people with intellectual disabilities. Res Dev Disabil 30:1258–1267

    Article  PubMed  Google Scholar 

  35. McConkey R, Mezza F (2001) Employment aspirations of people with learning disabilities attending day centres. J Learn Disabil 5(4):309–318

    Google Scholar 

  36. McHale R, McEvoy J, Tierney E (2009) Caregiver perceptions of the understanding of death and need for bereavement support in adults with intellectual disabilities. J Appl Res Intellect Disabil 22:574–581

    Article  Google Scholar 

  37. Einfeld SL, Tonge BT (1995) The developmental behavior checklist: the development and validation of an instrument to assess behavioral and emotional disturbance in children and adolescents with mental retardation. J Autism Dev Disord 25:81–104

    Article  CAS  PubMed  Google Scholar 

  38. Mohr C, Tonge BJ, Einfeld SL, Taffe J (2011) The developmental behaviour checklist for adults (DBC-A) revised. University of Sydney and Monash University, Sydney

    Google Scholar 

  39. Dunst CJ, Trivette CM, Jenkins V (1988) Family Needs Scale. In: Dunst CJ, Trivette CM, Deal A (eds) Enabling and empowering families: principles and guidelines for practice. Brookine Books, Cambridge

    Google Scholar 

  40. Dunst CJ, Jenkins V, Trivette CM (1984) Family support scale: reliability and validity. J Individ Fam Community Wellness 1:45–52

    Google Scholar 

  41. Tuckerman P, Cain P, Long B, Klarkowski J (Under Review) An exploration of trends in open employment in Australia since 1986. J Vocat Rehabil

  42. Eggleton I, Robertson S, Ryan J, Kober R (1999) The impact of employment on the quality of life of people with an intellectual disability. J Vocat Rehabil 13:95–107

    Google Scholar 

  43. Schalock RL, Borthwick-Duffy A, Bradley V, Buntinx WHE, Coulter DL, Craig EM, Gomez SC, Lachapelle Y, Luckasson RA, Reeve A, Shogren KA, Snell ME, Spreat S, Tasse MJ, Thompson JR, Verdugo-Alonso MA, Wehmeyer ML, Yeager MH (2010) Intellectual disability: definition, classification, and systems of supports, 11th edn. AAIDD, Washington, DC

    Google Scholar 

  44. Rasmussen DE, Sobsey D (1994) Age, adaptive behaviour and Alzheimer’s disease in Down syndrome: cross-sectional and longitudinal analyses. Am J Ment Retard 99(2):151–165

    CAS  PubMed  Google Scholar 

  45. Esbensen AJ, Seltzer M, Krauss MW (2008) Stability and change in health, functional abilities, and behavior problems among adults with and without Down syndrome. Am J Ment Retard 113(4):263–277

    Article  PubMed Central  PubMed  Google Scholar 

  46. Brown I, Anand S, Fung A, Isaacs B, Baum N (2003) Family quality of life: Canadian results from an international study. J Dev Phys Disabil 15(3):207–230

    Article  Google Scholar 

  47. Schneider J, Wedgewood N, Llewellyn G, McConnell D (2006) Families challenged by and accommodating to the adolescent years. J Intellect Disabil Res 50(12):926–936

    Article  CAS  PubMed  Google Scholar 

  48. Scorgie K, Sobsey D (2000) Transformational outcomes associated with parenting children who have disabilities. Ment Retard 38:195–206

    Article  CAS  PubMed  Google Scholar 

  49. Parmenter T (2011) Promoting training and employment opportunities for people with intellectual disabilities: international experience. Employment sector: employment working paper No. 103. International Labour Office, Geneva

  50. Cunningham C (1996) Families of children with Down syndrome. Down Syndr Res Pract 4:87–95

    Article  Google Scholar 

  51. Riper MV (2007) Families of children with Down syndrome: responding to ‘a change in plans’ with resilience. J Pediatr Nurs 22(2):116–128

    Article  PubMed  Google Scholar 

  52. McCubbin MA, McCubbin HI (1993) Families coping with illness: the resilience model of family stress, adjustment and adaptation. In: Danielson C, Hamell-Bissell P, Winstead-Fry P (eds) Family, health and illness: perspectives on coping and intervention. Mosby, St Loius, pp 21–63

    Google Scholar 

  53. Einfeld SL, Piccinin AM, MacKinnon A, Hofer SM, Taffe J, Gray KM, Bontempo DE, Hoffman LR, Parmenter T, Tonge BJ (2006) Psychopathology in young people with intellectual disability. J Am Med Assoc 296(16):1981–2682

    Article  CAS  Google Scholar 

  54. Rillotta F, Kirby N, Shearer J, Nettelbeck T (2012) Family quality of life of Australian families with a member with an intellectual/developmental disability. J Intellect Disabil Res 56(1):71–86

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

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.

Author information

Authors and Affiliations

  1. Telethon Institute for Child Health Research, The University of Western Australia, Perth, Australia

    Kitty-Rose Foley, Sonya Girdler, Jenny Downs, Peter Jacoby, Jenny Bourke & Helen Leonard

  2. School of Exercise and Health Sciences, Edith Cowan University, Perth, Australia

    Kitty-Rose Foley & Sonya Girdler

  3. School of Occupational Therapy and Social Work, Curtin University, Perth, WA, Australia

    Sonya Girdler

  4. School of Physiotherapy and Exercise Science, Curtin University, Perth, WA, Australia

    Jenny Downs

  5. School of Medicine, Queensland Centre for Intellectual and Developmental Disability, University of Queensland, Brisbane, Australia

    Nick Lennox

  6. Faculty of Health Sciences, University of Sydney, Sydney, Australia

    Stewart Einfeld

  7. Brain and Mind Research Institute, University of Sydney, Sydney, Australia

    Stewart Einfeld

  8. Family and Disability Studies, Faculty of Health Sciences, University of Sydney, Sydney, Australia

    Gwynnyth Llewellyn

  9. Sydney Medical School, University of Sydney, Sydney, Australia

    Trevor R. Parmenter

Authors
  1. Kitty-Rose Foley
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sonya Girdler
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jenny Downs
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Peter Jacoby
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Jenny Bourke
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Nick Lennox
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Stewart Einfeld
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Gwynnyth Llewellyn
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Trevor R. Parmenter
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Helen Leonard
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Helen Leonard.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Foley, KR., Girdler, S., Downs, J. et al. Relationship between family quality of life and day occupations of young people with Down syndrome. Soc Psychiatry Psychiatr Epidemiol 49, 1455–1465 (2014). https://doi.org/10.1007/s00127-013-0812-x

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00127-013-0812-x

Keywords

Search

Navigation