Community participation: Conversations with parent-carers of young women with Rett syndromeFootnote

† This manuscript was accepted under the Editorship of Susan Balandin.

References

• Almack, K., Clegg, J., & Murphy, E. (2009). Parental negotiations of the moral terrain of risk in relation to young people with intellectual disabilities. Journal of Community & Applied Social Psychology, 19, 286–298. doi:10.1002/casp.992
   Web of Science ®Google Scholar
• Amado, A. R. N. (1993). Working on friendships. In A. R. N. Amado (Ed.), Friendships and community connections between people with and without developmental disabilities (pp. 279–298). Baltimore, MD: Brookes.
   Google Scholar
• Amir, R. E., van den Veyver, I. B., Wan, M., Tran, C. Q., Francke, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nature Genetics, 23, 185–188. doi:10.1038/13810
   PubMed Web of Science ®Google Scholar
• Andrews, J., Leonard, H., Hammond, G. C., Girdler, S., Rajapaksa, R., Bathgate, K., & Downs, J. (2013). Community participation for girls and women living with Rett syndrome. Disability and Rehabilitation. Advance online publication. doi:10.3109/09638288.2013.813083
   PubMed Web of Science ®Google Scholar
• Arnett, J. J. (2000). Emerging adulthood: A theory of development from the late teens through the twenties. American Psychologist, 55, 469–480.
   PubMed Web of Science ®Google Scholar
• Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology of knowledge. Harmondsworth, UK: Penguin.
   Google Scholar
• Berkman, L. F., Glass, T., Brissette, I., & Seeman, T. E. (2000). From social integration to health: Durkheim in the new millennium. Social Science & Medicine, 51, 843–857. doi:10.1016/S0277-9536(00)00065-4
   PubMed Web of Science ®Google Scholar
• Bigby, C. (2008). Known well by no-one: Trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community. Journal of Intellectual & Developmental Disability, 33, 148–157. doi:10.1080/13668250802094141
   PubMed Web of Science ®Google Scholar
• Bigby, C., Clement, T., Mansell, J., & Beadle Brown, J. (2009). ‘It's pretty hard with our ones, they can't talk, the more able bodied can participate’: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research, 53, 363–376. doi:10.1111/j.1365-2788.2009.01154.x
   PubMed Web of Science ®Google Scholar
• Bigby, C., & Wiesel, I. (2011). Encounter as a dimension of social inclusion for people with intellectual disability: Beyond and between community presence and participation. Journal of Intellectual & Developmental Disability, 36, 263–267. doi:10.3109/13668250.2011.619166
   Web of Science ®Google Scholar
• Charman, T., Cass, H., Owen, L., Wigram, T., Slonims, V., Weeks, L., … Reilly, S. (2002). Regression in individuals with Rett syndrome. Brain & Development, 24, 281–283. doi:10.1016/S0387-7604(02)00058-X
   PubMed Web of Science ®Google Scholar
• Clement, T., & Bigby, C. (2009). Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 22, 264–275. doi:10.1111/j.1468-3148.2008.00458.x
   Web of Science ®Google Scholar
• Colvin, L., Fyfe, S., Leonard, S., Schiavello, T., Ellaway, C., de Klerk, N., … Leonard, H. (2003). Describing the phenotype in Rett syndrome using a population database. Archives of Disease in Childhood, 88, 38–43. doi:10.1136/adc.88.1.38
   PubMed Web of Science ®Google Scholar
• Denzin, N. K., & Lincoln, Y. S. (2011). The Sage handbook of qualitative research (4th ed.). Thousand Oaks, CA: Sage.
   Google Scholar
• Downs, J. A., Bebbington, A., Jacoby, P., Msall, M. E., McIlroy, O., Fyfe, S., … Leonard, H. (2008). Gross motor profile in Rett syndrome as determined by video analysis. Neuropediatrics, 39, 205–210. doi:10.1055/s-0028-1104575
   PubMed Web of Science ®Google Scholar
• Dowse, L. (2009). ‘Some people are never going to be able to do that’. Challenges for people with intellectual disability in the 21st century. Disability & Society, 24, 571–584. doi:10.1080/09687590903010933
   Web of Science ®Google Scholar
• Felce, D., Perry, J., & Kerr, M. (2011). A comparison of activity levels among adults with intellectual disabilities living in family homes and out-of-family placements. Journal of Applied Research in Intellectual Disabilities, 24, 421–426. doi:10.1111/j.1468-3148.2010.00620.x
   Web of Science ®Google Scholar
• Fiorillo, D., & Sabatini, F. (2011). Quality and quantity: The role of social interactions in self-reported individual health. Social Science & Medicine, 73, 1644–1652. doi:10.1016/j.socscimed.2011.09.007
   PubMed Web of Science ®Google Scholar
• Grant, G., & Ramcharan, P. (2001). Views and experiences of people with intellectual disabilities and their families. (2) The family perspective. Journal of Applied Research in Intellectual Disabilities, 14, 364–380. doi:10.1046/j.13602322.2001.00077.x
   Web of Science ®Google Scholar
• Hagberg, B., Berg, M., & Steffenburg, U. (2001). Three decades of sociomedical experiences from West Swedish Rett females 4–60 years of age. Brain & Development, 23(Suppl. 1), S28–S31. doi:10.1016/S0387-7604(01)00331-X
   Google Scholar
• Hole, R. D., Stainton, T., & Wilson, L. (2013). Ageing adults with intellectual disabilities: Self-advocates’ and family members’ perspectives about the future. Australian Social Work, 66, 571–589. doi:10.1080/0312407x.2012.689307
   Web of Science ®Google Scholar
• Johnson, H., West, D., Solarsh, B., & Bloomberg, K. (2010). Social inclusion: Are we communicating?. In C. Bigby & C. Fyffe (Eds.), State disability policy for the next ten years – what should it look like? Proceedings of the Fifth Annual Roundtable on Intellectual Disability Policy (pp. 93–101). Bundoora, Australia: La Trobe University.
   Google Scholar
• Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the craft of qualitative research interviewing (2nd ed.). Los Angeles, CA: Sage.
   Google Scholar
• Lavås, J., Slotte, A., Jochym-Nygren, M., van Doorn, J., & Engerström, I. W. (2006). Communication and eating proficiency in 125 females with Rett syndrome: The Swedish Rett Center Survey. Disability and Rehabilitation, 28, 1267–1279. doi:10.1080/09638280600554868
   PubMed Web of Science ®Google Scholar
• Leonard, H., Downs, J., Jian, L., Bebbington, A., Jacoby, P., Nagarajan, L., … Woodhead, H. (2010). Valproate and risk of fracture in Rett syndrome. Archives of Disease in Childhood, 95, 444–448. doi:10.1136/adc.2008.148932
   PubMed Web of Science ®Google Scholar
• Levasseur, M., Richard, L., Gauvin, L., & Raymond, E. (2010). Inventory and analysis of definitions of social participation found in the aging literature: Proposed taxonomy of social activities. Social Science & Medicine, 71, 2141–2149.
   PubMed Web of Science ®Google Scholar
• Lord, J., & Hutchison, P. (2011). Pathways to inclusion: Building a new story with people and communities (2nd ed.). Concord, Canada: Captus Press.
   Google Scholar
• O'Brien, J. (1989). What's worth working for? Leadership for better quality human services. Lithonia, GA: Responsive Systems Associates.
   Google Scholar
• O'Brien, J., & Mount, B. (2005). Make a difference: A guidebook for person-centred direct support. Toronto, Canada: Inclusion Press.
   Google Scholar
• Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
   Google Scholar
• Pilnick, A., Clegg, J., Murphy, E., & Almack, K. (2011). ‘Just being selfish for my own sake … ’: Balancing the views of young adults with intellectual disabilities and their carers in transition planning. The Sociological Review, 59, 303–323. doi:10.1111/j.1467-954X.2011.02006.x
   Web of Science ®Google Scholar
• Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Social Science & Medicine, 67, 834–843. doi:10.1016/j.socscimed.2008.05.023
   PubMed Web of Science ®Google Scholar
• Stainton, T., Chenoweth, L., & Bigby, C. (2010). Social work and disability: An uneasy relationship [Editorial]. Australian Social Work, 63, 1–3. doi:10.1080/03124070903291886
   Web of Science ®Google Scholar
• Twigg, J., & Atkin, K. (1994). Carers perceived: Policy and practice in informal care. Buckingham, England: Open University Press.
   Google Scholar
• United Nations. (2007). Convention on the rights of persons with disabilities and optional protocol. Geneva, Switzerland: Author.
   Google Scholar
• Webster, K. (2008, November). Supporting social participation: Half-a-dozen ways to build health promotion goals into Australian social inclusion policy. Paper presented at the Social Inclusion and Working Years Workshop, Fitzroy, Victoria. Retrieved from http://www.bsl.org.au/pdfs/Webster_SI_workshop_paper_Nov08_1.pdf
   Google Scholar
• Wolfensberger, W. (2000). A brief overview of social role valorization. Mental Retardation, 38, 105–123. doi:10.1352/0047-6765(2000)038<0105:aboosr>2.0.co;2
   PubMedGoogle Scholar