1,240
Views
12
CrossRef citations to date
0
Altmetric
Relationality

Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”

ORCID Icon & ORCID Icon

References

  • Biswas, S., Moghaddam, N., & Tickle, A. (2015). What are the factors that influence parental stress when caring for a child with an intellectual disability? A critical literature review. International Journal of Developmental Disabilities, 61(3), 127–146. doi: 10.1179/2047387714Y.0000000043
  • 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(1), 83–100. doi: 10.1080/13668250020032787
  • Doran, C. M., Einfeld, S. L., Madden, R. H., Otim, M., Horstead, S. K., Ellis, L. A., & Emerson, E. (2012). How much does intellectual disability really cost? First estimates for Australia. Journal of Intellectual & Developmental Disability, 37(1), 42–49. doi: 10.3109/13668250.2011.648609
  • Dowse, L., Hogan, L., Dew, A., Wiese, M., Conway, P., Dreyfus, S., & Smith, L. (2017). Responding to behaviour needs in the disability services future, discussion paper. Sydney: UNSW Sydney.
  • Drysdale, E. E., Jahoda, A., & Campbell, E. (2009). Investigating spontaneous attributions in mothers of individuals with intellectual disabilities and self-injurious behaviour. British Journal of Learning Disabilities, 37(3), 197–206. doi: 10.1111/j.1468-3156.2009.00549.x
  • Duignan, M., & Connell, J. (2015). Living with autistic spectrum disorders: Families, homes and the disruption of space. Geographical Research, 53(2), 199–210. doi: 10.1111/1745-5871.12112
  • Dunlap, G., & Fox, L. (2007). Parent-professional partnerships: A valuable context for addressing challenging behaviours, International Journal of Disability, Development and Education, 54(3), 273–285. doi: 10.1080/10349120701488723
  • Egilson, S. T. (2011). Parent perspectives of therapy services for their children with physical disabilities. Scandinavian Journal of Caring Sciences, 25(2), 277–284. doi: 10.1111/j.1471-6712.2010.00823.x
  • Elliott, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215–229. doi: 10.1348/014466599162782
  • Griffith, G. M., & Hastings, R. P. (2014). ‘He’s hard work, but he’s worth it’. The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: A meta-synthesis of qualitative research. Journal of Applied Research in Intellectual Disabilities, 27(5), 401–419. doi: 10.1111/jar.12073
  • Halliday, M. A. K., & Matthiessen, C. M. I. M. (2014). Halliday’s introduction to functional grammar (4th ed.). London: Routledge.
  • Hatton, C., Emerson, E., Kirby, S. Kotwal, H., Baines, S., Hutchison, C., … Marks, B. (2010). Majority and minority ethnic family carers of adults with intellectual disabilities: Perceptions of challenging behaviour and family impact. Journal of Applied Research in Intellectual Disabilities, 23(1), 63–74.
  • Henderson-Brooks, C. (2006). ‘Words being its marker’: A linguistic study of self as shifting state in three types of psychotherapeutic conversation. In E. Swain (Ed.), Thresholds and potentialities of systemic functional linguistics: Multilingual, multimodal and other specialised discourses (pp. 229–267). Gorizia: University of Trieste.
  • Hodge, N., & Runswick-Cole, K. (2008). Problematising parent–professional partnerships in education. Disability & Society, 23(6), 637–647. doi: 10.1080/09687590802328543
  • Hubert, J. (2011). ‘My heart is always where he is’. Perspectives of mothers of young people with severe intellectual disabilities and challenging behaviour living at home. British Journal of Learning Disabilities, 39, 216–224. doi: 10.1111/j.1468-3156.2010.00658.x
  • Karimi, N., Lukin, A., Moore, A.R., Walczak, A., & Butow, P. (in press). Advanced cancer patients’ construction of self during oncology consultation: A transitivity concordance analysis. Functional Linguistics.
  • Keen, D. (2007) Parents, families and partnerships: Issues and considerations. International Journal of Disability, Development and Education, 54(3), 339–349. doi: 10.1080/10349120701488855
  • Lukin, A. (2013). The meanings of war: From lexis to context. Journal of Language and Politics, 12(3), 424–444. doi: 10.1075/jlp.12.3.06luk
  • Maes, B., Broekman, T. G., Dosen, A., & Nauts, J. (2003). Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research, 47(6), 447–455.
  • Martin, J. R. (2000). Close reading: Functional linguistics as a tool for critical analysis. In L. Unsworth (Ed.), Researching language in schools and communities: Functional linguistics approaches (pp. 275–303). London: Cassell.
  • McConkey, R. (2005). Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research, 49, 600–612. doi: 10.1111/j.1365-2788.2005.00697.x
  • McGill, P., Tennyson, A., & Cooper, V. (2006). Parents whose children with learning disabilities and challenging behaviour attend 52-week residential schools: Their perceptions of services received and expectations of the future. The British Journal of Social Work, 36(4), 597–616.
  • McGill, P., Papachristoforou, E., & Cooper, V. (2006). Support for family carers of children and young people with developmental disabilities and challenging behaviour. Childcare Health Development, 32(2), 159–165.
  • McKenzie, K., Mayer, C., Whelan, K. J., McNall, A., Noone, S., & Chaplin, J. (2018). The views of carers about support for their family member with an intellectual disability: With a focus on positive behavioural approaches. Health and Social Care in the Community, 26(1), e56–e63. doi: 10.1111/hsc.12475
  • Ng, J., & Rhodes, P. (2018) Caring in extremis: Why do parents of children with intellectual disabilities and severe challenging behaviour relinquish care. The Qualitative Report, 23(1), 146–157.
  • Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research, 51, 109–24. doi: 10.1111/j.1365-2788.2006.00829.x
  • Read, J. (2000). Disability, the family, and society: Listening to mothers. Philadelphia, PA: Open University Press.
  • Storr, G. L. (2014). Parental experiences of caring for a child with intellectual disabilities: A UK perspective. Journal of Intellectual Disabilities, 18(2), 146–158. doi: 10.1177/1744629514525132
  • Thompson-Janes, E., Brice, S., McElroy, R., Abbott, J., & Ball, J. (2016). Learning from the experts: A thematic analysis of parent’s experiences of attending a therapeutic group for parents of children with learning disabilities and challenging behaviour. British Journal of Learning Disabilities, 44, 95–102. doi: 10.1111/bld.12115
  • Walmsley, J., Tilley, L., Dumbleton, S., & Bardsley, J. (2017). The changing face of parent advocacy: A long view. Disability & Society, 32(9), 1366–1386. doi: 10.1080/09687599.2017.1322496

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.