496
Views
26
CrossRef citations to date
0
Altmetric
ARTICLES

Professionals’ views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital

, &
Pages 127-136 | Published online: 10 Jul 2009

References

  • Allen D. Negotiating the role of expert carers on an adult hospital ward. Sociology of Health and Illness 2000; 22((2))149–171
  • American Psychological Association. Publication Manual of the American Psychological Association (5th ed.). American Psychological Association, Washington, DC 2003
  • Balandin S. Message from the President. The ISAAC Bulletin 2002; 67: 2
  • Balandin S., Dew A., Llewellyn G., Kendig H. Communicating in hospital without functional speech. [Conference Abstract.]. Journal of Intellectual Disability Research 2004; 48: 425
  • Balandin S., Hemsley B., Sigafoos J., Green V. Communication with nurses: The experiences of 10 individuals with cerebral palsy and complex communication needs. Applied Nursing Research 2007; 20: 56–62
  • Balandin S., Hemsley B., Sigafoos J., Green V., Forbes R., Taylor C., et al. Communicating with nurses: The experiences of 10 individuals with an acquired severe communication impairment. Brain Impairment 2001; 2((2))109–118
  • Dewar B., Tocher R., Watson W. Enhancing partnerships with relatives in care settings. Nursing Standard 2003; 17((40))33–39
  • Eddey G. E., Robey K. L. Considering the culture of disability in cultural competence education. Academic Medicine 2005; 80: 706–712
  • Gabriel Z., Bowling A. Quality of life in old age from the perspectives of older people. Growing older: Quality of life in old age, Walker A, Hennessy C. H. Open University Press, New York 2004; 14–34
  • Grant G., Nolan M., Keady J. Supporting families over the life course: Mapping temporality. Journal of Intellectual Disability Research 2003; 47((4/5))342–351
  • Helmes E., Green B., Almeida O. P. Individual differences in the experience of burden in caring for relatives with dementia: Role of personality and mastery. Australasian Journal on Ageing 2005; 24((4))202–206
  • Hemsley B., Balandin S. Without AAC: The stories of unpaid carers of adults with cerebral palsy and CCN in hospital. Augmentative and Alternative Communication 2004; 20: 243–258
  • Hemsley B., Balandin S., Togher L. Older unpaid carers’ experiences supporting adults with cerebral palsy and complex communication needs in hospital. Journal of Developmental and Physical Disabilities 2007a; 19((2))115–124
  • Hemsley B., Balandin S., Togher L. Narrative analysis of the hospital experience for older parents of people who cannot speak. Journal of Aging Studies 2007b; 21: 239–254
  • Hemsley B., Balandin S., Togher L. Family caregivers discuss roles and needs in supporting adults with cerebral palsy and complex communication needs in the hospital setting. Journal of Developmental and Physical Disabilities 2008a; 20: 257–274
  • Hemsley B., Balandin S., Togher L. “I’ve got something to say”: Interaction in a focus group of adults with cerebral palsy and complex communication needs. Augmentative and Alternative Communication 2008b; 24((2))110–122
  • Hemsley B., Balandin S., Togher L. “We need to be the centrepiece”: Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital. Disability & Rehabilitation in press
  • Hemsley B., Sigafoos J., Balandin S., Forbes R., Taylor C., Green V., et al. Nursing the patient with severe communication impairment. Journal of Advanced Nursing 2001; 35((6))827–835
  • Iacono T., Davis R. The experiences of people with developmental disability in emergency departments and hospital wards. Research in Developmental Disabilities 2003; 24((4))247–264
  • Kersten P., McLellan L., George S., Mullee M. A., Smith J. A. E. Needs of carers of severely disabled people: Are they identified and met adequately?. Health and Social Care in the Community 2001; 9((4))235–243
  • Law J., Bunning K., Byng S., Farrelly S., Heyman B. Making sense in primary care: Leveling the playing field for people with communication difficulties. Disability & Society 2005; 20((2))169–184
  • Llewellyn G., Dew A., Kendig H., Cant R. Older parent caregivers’ engagement with the service system. American Journal on Mental Retardation 2004; 109((5))379–396
  • May J., Ellis‐Hill C., Payne S. Gatekeeping and legitimization: How informal carers’ relationship with health care workers is revealed in their everyday interactions. Journal of Advanced Nursing 2001; 36((3))364–375
  • McKee K., Brown J., Nolan M. Determinants of quality of life in informal carers of older people. Psychology & Health 2006; 21((Suppl. 1))101
  • Morgan D. L., Krueger R. A. The focus group kit. Sage, Thousand Oaks, CA 1998
  • New South Wales Department of Health. 2008. Policy Directive. Disability ‐ People with disabilities: Responding to their needs during hospitalisation. NSW Department of Health Policy Division. Available at: http://www.health.nsw.gov.au/policies/pd/2008/PD2008_010.html
  • Newell C. J. Disabling health systems. Interaction 1999; 12((4))13–16
  • Nolan M. Working with family carers: Towards a partnership approach. Reviews in Clinical Gerontology 2001; 11: 91–97
  • Nolan M., Dellasega C. “I really feel I’ve let him down”: Supporting family carers during long‐term care placement for elders. Journal of Advanced Nursing 2000; 31((4))759–767
  • Nolan M., Keady J., Grant G. Developing a typology of family care: Implications for nurses and other service providers. Journal of Advanced Nursing 1995; 21((2))256–265
  • Olsen R., Parker G., Drewett A. Carers and the missing link: Changing professional attitudes. Health & Social Care in the Community 1997; 5((2))116–123
  • Patton M. Q. Qualitative research and evaluation methods (3rd ed.). Sage Publications, Inc, Thousand Oaks, CA 2005
  • Pearlin L. I., Lieberman M. A., Menaghan E. G., Mullan J. T. The stress process. Journal of Health and Social Behaviour 1981; 22: 337–356
  • Raina P., O’Donnell M., Rosenbaum P., Brehaut J., Walter S. D., Russell D., et al. The health and well‐being of caregivers of children with cerebral palsy. Pediatrics 2005; 115((6))E626–E636
  • Skaff M. M., Pearlin L. I., Mullan J. T. Transitions in the caregiving career: Effects on sense of mastery. Psychology and Aging 1996; 11((2))247–251
  • Sowney M., Barr O. G. Caring for adults with intellectual disabilities: Perceived challenges for nurses in accident and emergency units. Journal of Advanced Nursing 2006; 55((1))36–45

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.