The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life

Journal of Intellectual and Developmental Disability

Volumn 38, Issue 2, 2013, Pages 149-162

  Dyke, Paula ^a   Bourke, Jenny ^a   Llewellyn, Gwynnyth ^b   Leonard, Helen ^a  

^a UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Adulthood; Down syndrome; ICF; Intellectual disability; Rett syndrome; School; Transitions

Indexed keywords

ADULT; ARTICLE; AUSTRALIA; DAILY LIFE ACTIVITY; DEPENDENT PERSONALITY DISORDER; DISABILITY; DISABLED PERSON; DOWN SYNDROME; FEMALE; HUMAN; INTERNATIONAL CLASSIFICATION OF DISEASES; INTERVIEW; MALE; MOTHER; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRE; RETT SYNDROME; SCHOOL; SOCIAL ADAPTATION; SOCIAL SUPPORT;

ACTIVITIES OF DAILY LIVING; ADULT; AUSTRALIA; DEPENDENCY (PSYCHOLOGY); DISABILITY EVALUATION; DISABLED PERSONS; DOWN SYNDROME; FEMALE; HUMANS; INTERNATIONAL CLASSIFICATION OF DISEASES; INTERVIEWS AS TOPIC; MALE; MOTHERS; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRES; RETT SYNDROME; SCHOOLS; SOCIAL ADJUSTMENT; SOCIAL SUPPORT; YOUNG ADULT;

EID: 84877827464     PISSN: 13668250     EISSN: 14699532     Source Type: Journal    
DOI: 10.3109/13668250.2013.789099     Document Type: Article

References (47)

1. Australian Institute of Health and Welfare. (2003). ICF Australian user guide: Version 1.0. (Disability Series AIHW Cat. No. DIS 33). Canberra: Author .
2. Bassett, D. S., & Smith, T. E. C. (1996). Transition in an era of reform. Journal of Learning Disabilities, 29, 161-166. doi: 10.1177/ 002221949602900205
3. Beresford, B. (2004). On the road to nowhere? Young disabled people and transition. Child: Care, Health and Development, 30, 581-587. doi: 10.1111/j.1365-2214.2004.00469.x (Pubitemid 39562447)
4. Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal on Mental Retardation, 106, 173-188 .
5. Bourke, J., Ricciardo, B., Bebbington, A., Aiberti, K., Jacoby, P., Dyke, P., Leonard, H. (2008). Physical and mental health in mothers of children with Down syndrome. The Journal of Pediatrics, 153, 320-326. doi: 10.1016/j.jpeds.2008.02.047
6. Clegg, J., Sheard, C., Cahill, J., & Osbeck, L. (2001). Severe intellectual disability and transition to adulthood. British Journal of Medical Psychology, 74, 151-166. doi: 10.1348/00071120 1160885 (Pubitemid 32600053)
7. Cummins, R. A. (2001). The subjective well-being of people caring for a family member with a severe disability at home: A review. Journal of Intellectual & Developmental Disability, 26, 83-100. doi: 10.1080/13668250020032787 (Pubitemid 32267756)
8. Davies, M. D., & Beamish, W. (2009). Transitions from school for young adults with intellectual disability: Parental perspectives on " life as an adjustment. Journal of Intellectual & Developmental Disability, 34, 248-257. doi: 10.1080/1366825 0903103676
9. Dowrick, M. K. (2004). Learning outcomes for students of school leaving age in special schools: A preliminary study of stakeholders ' perceptions. Journal of Intellectual & Developmental Disability, 29, 293-305. doi: 10.1080/13668250400014475 (Pubitemid 40065179)
10. Eley, D. S., Boyes, J., Young, L., & Hegney, D. G. (2009). Accommodation needs for carers of and adults with intellectual disability in regional Australia: Their hopes for and perceptions of the future. Rural and Remote Health, 9 (3), 1239 .
11. European Agency for Development in Special Needs Education. (2002). Transition from school to employment: Summary report. Brussels, Belgium: Author .
12. 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. Disability and Rehabilitation, 34, 1747-1764. doi: 10.3109/09638288.2012.660603
13. Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112. doi: 10.1016/j.nedt.2003. 10.001 (Pubitemid 38232767)
14. Hendey, N., & Pascall, G. (2001). Disability and transition to adulthood: Achieving independent living. York, UK: Joseph Rowntree Foundation .
15. Heslop, P., & Abbott, D. (2007). School ' s out: Pathways for young people with intellectual disabilities from out-of-area residential schools or colleges. Journal of Intellectual Disability Research, 51, 489-496. doi: 10.1111/j.1365-2788.2006.00901.x (Pubitemid 47097239)
16. Heslop, P., Mallett, R., Simons, K., & Ward, L. (2002). Bridging the divide at transition: What happens for young people with learning diffi culties and their families? Kidderminster, UK: British Institute of Learning Disabilities .
17. Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277-1288. doi: 10.1177/1049732305276687 (Pubitemid 41645161)
18. Hudson, B. (2003). From adolescence to young adulthood: The partnership challenge for learning disability services in England. Disability & Society, 18, 259-276. doi: 10.1080/0968759032000052851 (Pubitemid 36877968)
19. Knox, M. (2000). Family control: The views of families who have a child with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 13, 17-28. doi: 10.1046/j.1468-3148.2000.00001.x
20. Kohler, P. D., & Field, S. (2003). Transition-focused education: Foundation for the future. The Journal of Special Education, 37, 174-183. doi: 10.1177/00224669030370030701 (Pubitemid 37364727)
21. Kraemer, B. R., & Blacher, J. (2001). Transition for young adults with severe mental retardation: School preparation, parent expectations, and family involvement. Mental Retardation, 39, 423-435. doi: 10.1352/0047- 6765(2001)039-0423: TFYAW S-2.0.CO;2 (Pubitemid 33603679)
22. Kraemer, B. R., McIntyre, L. L., & Blacher, J. (2003). Quality of life for young adults with mental retardation during transition. Mental Retardation, 41, 250-262. doi: 10.1352/0047-6765 (2003)41-250: QOLFYA-2.0.CO;2
23. Krupinski, J., Mackenzie, A., Meredith, E., & Stoller, A. (1973). A follow-up of mentally retarded young adults. Melbourne, Australia: Mental Health Authority of Victoria .
24. Laragy, C. (2004). Self-determination within Australian school transition programmes for students with a disability. Disability & Society, 19, 519-530. doi: 10.1080/0968759042000235343 (Pubitemid 39203079)
25. Laurvick, C. L., de Klerk, N., Bower, C., Christodoulou, J., Ravine, D., Ellaway, C., Leonard, H. (2006). Rett syndrome in Australia: A review of the epidemiology. Journal of Pediatrics, 148, 347-352. doi: 10.1016/j.jpeds.2005.10. 037
26. Laurvick, C. L., Msall, M. E., Silburn, S., Bower, C., de Klerk, N., & Leonard, H. (2006). Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics, 118, e1152-e1164. doi: 10.1542/peds.2006-0439 (Pubitemid 46393765)
27. Leonard, H., Bower, C., & English, D. (1997). The prevalence and incidence of Rett syndrome in Australia. European Child & Adolescent Psychiatry, 6 (Suppl. 1), 8-10 . (Pubitemid 28027143)
28. Leonard, H., Colvin, L., Christodoulou, J., Schiavello, T., Williamson, S., Davis, M., Yamashita, Y. (2003). Patients with the R133C mutation: Is their phenotype different from patients with Rett syndrome with other mutations? Journal of Medical Genetics, 40, e52. doi: 10.1136/jmg.40.5.e52
29. Leonard, H., Moore, H., Carey, M., Fyfe, S., Hall, S., Robertson, L., de Klerk, N. (2005). Genotype and early development in Rett syndrome: The value of international data. Brain & Development, 27, S59-S68. doi: 10.1016/j.braindev.2005. 03.023 (Pubitemid 41501611)
30. Leonard, S., Bower, C., Petterson, B., & Leonard, H. (2000). Survival of infants born with Down ' s syndrome: 1980-96. Paediatric and Perinatal Epidemiology, 14, 163-171. doi: 10.1046/j.1365-3016.2000.00252.x (Pubitemid 30199252)
31. Neece, C. L., Kraemer, B. R., & Blacher, J. (2009). Transition satisfaction and family well being among parents of young adults with severe intellectual disability. Intellectual and Developmental Disabilities, 47, 31-43. doi: 10.1352/2009.47: 31-43
32. Parmenter, T. R., & Knox, M. (1991). The post-school experiences of young people with a disability. International Journal of Rehabilitation Research, 14, 281-291. doi: 10.1097/00004356-199112000-00001
33. Riches, V. (1996). A review of transition from school to community for students with disabilities in NSW, Australia. Journal of Intellectual & Developmental Disability, 21, 71-88. doi: 10.1080/13668259600033051 (Pubitemid 26180847)
34. Rosenbaum, P., & Stewart, D. (2007). Perspectives on transitions: rethinking services for children and youth with developmental disabilities. Archives of Physical Medicine and Rehabilitation, 88, 1080-1082. doi: 10.1016/j.apmr.2007.06.001 (Pubitemid 47126401)
35. Rowbotham, M., Cuskelly, M., & Carroll, A. (2011). Sustainable caregiving? Demands upon and resources of female carers of adults with intellectual disability. Journal of Women & Aging, 23, 129-148. doi: 10.1080/08952841.2011.561141
36. Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., Parmenter, T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40, 457-470. doi: 10.1352/0047-6765(2002)040-0457: CMAAOQ-2.0.CO;2
37. Schneider, J., Wedgewood, N., Llewellyn, G., & McConnell, D. (2006). Families challenged by and accommodating to the adolescent years. Journal of Intellectual Disability Research, 50, 926-936. doi: 10.1111/j.1365-2788.2006. 00925.x (Pubitemid 44697918)
38. Tarleton, B., & Ward, L. (2005). Changes and choices: Finding out what information young people with learning disabilities, their parents and supporters need at transition. British Journal of Learning Disabilities, 33, 70-76. doi: 10.1111/j.1468-3156. 2005.00344.x (Pubitemid 40782162)
39. Thomas, K., Bourke, J., Girdler, S., Bebbington, A., Jacoby, P., & Leonard, H. (2011). Variation over time in medical conditions and health service utilization of children with Down syndrome. The Journal of Pediatrics, 158, 194-200.e1. doi: 10.1016/j. jpeds.2010.08.045
40. Timmons, J. C., Whitney-Thomas, J., McIntyre, J. P., Jr., Butterworth, J., & Allen, D. (2004). Managing service delivery systems and the role of parents during their children ' s transitions. Journal of Rehabilitation, 70 (2), 19-26 . (Pubitemid 38780770)
41. van Naarden Braun, K., Yeargin-Allsopp, M., & Lollar, D. (2006). A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: The acquisition of adult social roles. Disability and Rehabilitation, 28, 915-928. doi: 10.1080/09638280500304919 (Pubitemid 44138066)
42. Wagner, J., Newman, L., Cameto, R., & Levine, P. (2005). National Longitudinal Transition Study 2: Changes over time in the early postschool outcomes of youth with disabilities: A report of the fi ndings from the National Longitudinal Transition Study (NLTS) and National Longitudinal Study-2 (NLTS2). Menlo Park, CA: SRI International .
43. Wehman, P. (2006). Transition: The bridge from youth to adulthood. In P. Wehman (Ed.), Life beyond the classroom: Transition strategies for young people with disabilities (4th ed ., pp. 3-39). Baltimore, MD: Brookes .
44. Wehmeyer, M. L., & Palmer, S. B. (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38, 131-144 .
45. Wikler, L. M. (1986). Periodic stresses of families of older mentally retarded children: An exploratory study. American Journal of Mental Defi ciency, 90, 703-706 .
46. Wittenburg, D. C., Golden, T., & Fishman, M. (2002). Transition options for youth with disabilities: An overview of the programs and policies that affect the transition from school. Journal of Vocational Rehabilitation, 17, 195-206 . (Pubitemid 35345421)
47. World Health Organization. (2001). International Classifi cation of Functioning, Disability and Health: ICF. Geneva, Switerland: Author .