650
Views
29
CrossRef citations to date
0
Altmetric
Research Papers

‘We need to be the centrepiece’: Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital

, &
Pages 1759-1771 | Accepted 01 Aug 2007, Published online: 07 Jul 2009

References

  • Balandin S. Message from the President. Bull ISAAC 2000; 67: 2
  • Balandin S, Hemsley B, Sigafoos J, Green V. Communication with nurses: the experiences of 10 individuals with cerebral palsy and complex communication needs. Appl Nurs Res 2007; 20(2)56–62
  • Buzio A, Morgan J, Blount D. The experiences of adults with cerebral palsy during periods of hospitalisation. Aus J Advan Nurs 2002; 19(4)8–14
  • Iacono T, Davis R. The experiences of people with developmental disability in Emergency Departments and hospital wards. Res Dev Disabil 2003; 24(4)247–264
  • Kroll T, Jones G C, Kehn M, Neri M. T. Barriers and strategies affecting the utilization of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community 2006; 14(4)284–293
  • Robillard A B. Meaning of a disability: The lived experience of paralysis. Temple University Press, Philadelphia 1999
  • Nosek M A, Hughes R B, Howland C A, Shelton M L. The meaning of health for women with physical disabilities. Family Community Health 2004; 27(1)6–21
  • Sowney M, Barr O G. Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units. J Advan Nurs 2006; 55(1)36–45
  • Balandin S, Dew A, Llewellyn G, Kendig H. Communicating in hospital without functional speech. J Intellect Disabil Res 2004; 48: 425
  • Law J, Bunning K, Byng S, Farrelly S, Heyman B. Making sense in primary care: Leveling the playing field for people with communication difficulties. Disabil Soc 2004; 20(2)169–184
  • Melville C. Discrimination and health inequalities experienced by disabled people. Med Educat 2004; 39: 122–126
  • Young N L, Steele C, Fehlings D, Jutal J, Olmsted N, Williams J I. Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil 2005; 27(23)1455–1460
  • Hemsley B, Balandin S. Without AAC: The stories of unpaid carers of adults with cerebral palsy and CCN in hospital. AugmentAlternat Commun 2004; 20: 243–258
  • Hemsley B, Balandin S, Togher L. Narrative analysis of the hospital experience for older parents of people who cannot speak. J Aging Stud 2007; 21: 239–254
  • Nolan M, Grant G, Keady J. Understanding family care. Open University Press, Buckingham 1996
  • Disability, Ageing and Carers: Summary of Findings. Cat. No. 4430.0. [Internet]. Australian Bureau of Statistics. Australian Bureau of Statistics, Canberra 2003, [cited 27 February 2007]; Available from: http://www.abs.gov.au/AUSSTATS/[email protected]/DetailsPage/4430.02003?OpenDocument
  • Just A C. Parent participation in care: Bridging the gap in the pediatric ICU. Newborn Infant Nurs Rev 2005; 5(4)179–187
  • Kirk S. Negotiating lay and professional roles in the care of children with complex health needs. J Advan Nurs 2001; 34(5)593–602
  • Llewellyn G, Gething L, Kendig H, Cant R. Older parent caregivers' engagement with the service system. Am J Mental Retardation 2004; 109(5)279–296
  • Bigby C. Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities. McLennan and Petty, New South Wales 2000
  • Grant G, Nolan M, Keady J. Supporting families over the life course: Mapping temporality. J Intellectual Disabil Res 2003; 47(4/5)342–351
  • Kyle T V. The concept of caring: A review of the literature. J Advan Nurs 1995; 21: 506–514
  • McCance T V, McKenna H P, Boore J P. Caring: Theoretical perspectives of relevance to nursing. J Advan Nurs 1999; 30(6)1388–1395
  • Allen D. Negotiating the role of expert carers on an adult hospital ward. Sociol Health Illness 2000; 22(2)149–171
  • Pickard S, Shaw S, Glendinning C. Health care professionals' support for older carers. Ageing Society 2000; 20: 725–744
  • Wrubel J, Richards T A, Folkman S, Acree M. Tacit definitions of informal caregiving. J Advan Nurs 2000; 33(2)175–181
  • May J, Ellis-Hill C, Payne S. Gatekeeping and legitimization: how informal carers' relationship with health care workers is revealed in their everyday interactions.[see comment]. J Advan Nurs 2001; 36(3)364–375
  • Nolan M, Keady J, Grant G. Developing a typology of family care: Implications for nurses and other service providers. J Advan Nurs 1995; 21: 256–265
  • American Psychological Association. Publication Manual of the American Psychological Association. 5th ed. American Psychological Association, Washington 2003
  • Walker E, Dewar B J. How do we facilitate carers' involvement in decision-making?. J Advan Nurs 2001; 34(3)329–337
  • NSW Department of Health Policy Directive. Disability – People with Disabilities: Responding to their needs during hospitalisation. [Internet]. NSW Department of Health Policy Division, Sydney, NSW, 11 October 2005 –[cited 27 February 2007]. Available from: http://www.health.nsw.gov.au/policies/pd/2005/PD2005_625.html
  • Ygge B M, Lindholm C, Arnetz J. Hospital staff perceptions of parental involvement in paediatric hospital care. J Advan Nurs 2005; 53(5)534–542
  • Heaton J, Arksey H, Sloper P. Maintaining roles in care in the hospital might reassure the unpaid carer in obtaining an important sense of agency in an unfamiliar and unpredictable setting. Health Soc Care Community 1999; 7(2)91–99
  • Dewar B, Tocher R, Watson W. Enhancing partnerships with relatives in care settings for older people. Nurs Standard 2003; 17(40)33–39
  • Hemsley B, Sigafoos J, Balandin S, Forbes R, Taylor C, Green V, Parmenter T. Nursing the patient with severe communication impairment. J Advan Nurs 2001; 35(6)827–835
  • Hemsley B, Balandin S, Sheard C. Older parent carers of adults with complex communication needs and their experiences in providing unpaid care in hospital. J Intellect Disabil Res 2004; 48: 425
  • Balandin S, Raghavendra P. Challenging oppression: Augmented communicators' involvement in AAC research. Augmentative and alternative communication: New directions in research and practice, F T Loncke, J Clibbens, H H Arvidson, L L Lloyd. Whurr Publishers, London, 262–277
  • Bersani H, Jr. Nothing about me without me: A proposal for participatory action research in AAC. Augmentative and alternative communication: New directions in research and practice, F T Loncke, J Clibbens, H H Arvidson, L L Lloyd. Whurr Publishers, London 1999; 278–289
  • Jarrett N, Payne S. A selective review of the literature on nurse-patient communication: Has the patient's contribution been neglected?. J Advan Nurs 1994; 22: 72–78
  • Hemsley B, Balandin S, Togher L. Older unpaid carers' experiences supporting adults with cerebral palsy and complex communication needs in hospital. J Dev Phys Disabil 2007; 19(2)115–124
  • Morgan D L. Focus groups as qualitative research. Sage, Newbury Park, CA 1988
  • Morgan D L, Krueger R A. The Focus Group Kit. Sage, Thousand Oaks, CA 1988
  • 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. Augment Altern Commun 2008;24:110 – 122
  • Barbour R S, Kitzinger J. Introduction: The challenge and promise of focus groups. Developing focus group research: Politics, theory and practice, R S Barbour, J Kitzinger. Sage, London 1999; 1–20
  • Krueger R A. Focus groups: A practical guide for applied research. 2nd ed. Sage, Thousand Oaks, CA 1994
  • Krueger R A. Moderating focus groups. The focus group kit, D L Morgan, R A Krueger. Sage, Thousand Oaks, CA 1998; 4
  • Murphy J. Perceptions of communication between people with communication disability and general practice staff. Health Expectations 2006; 9: 49–59
  • Beukelman D, Mirenda P. Augmentative and alternative communication: Supporting children and adults with complex communication needs. 3rd ed. Paul H. Brookes Publishing Company, Baltimore 2005
  • Kent-Walsh J, McNaughton D. Communication partner instruction in augmentative and alternative communication: present practices and future directions. Augment Alternat Commun 2005; 21(3)195–204
  • Light J. Interaction involving individuals using AAC systems: State of the art and future directions. Augment Alternat Comm 1988; 4: 66–82
  • Light J. Communication is the essence of human life: Reflections on communicative competence. Augment Alternat Comm 1997; 13: 61–70
  • QSR. QSR NVivo®. QSR International Pty. Ltd, Doncaster, Victoria 1999
  • Kitzinger J. The methodology of focus groups: The importance of interaction between research participants. Sociol Health Illness 1994; 16(1)103–121
  • Stevens P E. Focus groups: Collecting aggregate-level data to understand community health phenomena. Public Health Nurs 1996; 13: 170–176
  • Patton M Q. Qualitative research and evaluation methods. 3rd ed. Sage Publications, Inc, Thousand Oaks, CA 2005
  • Balandin S, Hemsley B, Sigafoos J, Green V, Forbes R, Taylor C, Parmenter T. Communicating with nurses: The experiences of 10 individuals with an acquired severe communication impairment. Brain Impairment 2001; 2(2)109–118
  • Eddey G E, Robey K L. Considering the culture of disability in cultural competence education. Acad Med 2005; 80: 706–712
  • Fitton P. Listen to me: Communicating the needs of people with profound intellectual and multiple disabilities. Jessica Kingsley Publishers Ltd, London 1994

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.