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Social Psychiatry and Psychiatric Epidemiology

Erschienen in:

01.09.2014 | Original Paper

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

verfasst von: Kitty-Rose Foley, Sonya Girdler, Jenny Downs, Peter Jacoby, Jenny Bourke, Nick Lennox, Stewart Einfeld, Gwynnyth Llewellyn, Trevor R. Parmenter, Helen Leonard

Erschienen in: Social Psychiatry and Psychiatric Epidemiology | Ausgabe 9/2014

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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.

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

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

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

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):153–162PubMedCrossRef

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

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):e70401PubMedCentralPubMedCrossRef

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):320–326CrossRef

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):789–800PubMed

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

10.

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

11.

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

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

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):248–257PubMedCrossRef

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):84–90PubMedCrossRef

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 21:1–18CrossRef

16.

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

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

18.

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

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):198–205PubMedCrossRef

20.

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

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 13:17–28CrossRef

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

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):1747–1764CrossRef

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):1069–1083CrossRef

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):237–243PubMedCrossRef

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):82–94CrossRef

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):111–125CrossRef

29.

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

30.

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

31.

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

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):47–61PubMed

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):415–425CrossRef

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 30:1258–1267PubMedCrossRef

35.

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

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 22:574–581CrossRef

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 25:81–104PubMedCrossRef

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

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

40.

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

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

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

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):151–165PubMed

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):263–277PubMedCentralPubMedCrossRef

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):207–230CrossRef

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):926–936PubMedCrossRef

48.

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

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 4:87–95CrossRef

51.

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

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

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):1981–2682CrossRef

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):71–86PubMedCrossRef

Titel: Relationship between family quality of life and day occupations of young people with Down syndrome
verfasst von: Kitty-Rose Foley
Sonya Girdler
Jenny Downs
Peter Jacoby
Jenny Bourke
Nick Lennox
Stewart Einfeld
Gwynnyth Llewellyn
Trevor R. Parmenter
Helen Leonard
Publikationsdatum: 01.09.2014
Verlag: Springer Berlin Heidelberg
Erschienen in: Social Psychiatry and Psychiatric Epidemiology / Ausgabe 9/2014
Print ISSN: 0933-7954
Elektronische ISSN: 1433-9285
DOI: https://doi.org/10.1007/s00127-013-0812-x

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