'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 and Rehabilitation

Volumn 30, Issue 23, 2008, Pages 1759-1771

  Hemsley, Bronwyn ^a   Balandin, Susan ^a   Togher, Leanne ^a  

^a UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Adults; Augmentative and alternative communication; Cerebral palsy; Communication disability; Family carers; Focus groups; Hospital care

Indexed keywords

ADULT; ARTICLE; CAREGIVER; CEREBRAL PALSY; CLINICAL ARTICLE; COMMUNICATION DISORDER; CONTROLLED STUDY; FAMILY STUDY; HEALTH CARE ACCESS; HEALTH CARE NEED; HEALTH EDUCATION; HOSPITAL CARE; HOSPITAL PATIENT; HOSPITAL PERSONNEL; HOSPITALIZATION; HUMAN; INTERPERSONAL COMMUNICATION; NEEDS ASSESSMENT; NONVERBAL COMMUNICATION; PATIENT CARE; PATIENT DECISION MAKING; PRIORITY JOURNAL;

ADULT; CAREGIVERS; CEREBRAL PALSY; COMMUNICATION; COMMUNICATION BARRIERS; FAMILY; FEMALE; FOCUS GROUPS; HOSPITALIZATION; HUMANS; MALE; MIDDLE AGED; SPEECH DISORDERS;

EID: 57049155097     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.1080/09638280701645474     Document Type: Article

References (58)

1. Balandin, S. (2000) Message from the President. Bull ISAAC, 67, p. 2.
2. Balandin, S., Hemsley, B., Sigafoos, J. and Green, V. (2007) Communication with nurses: The experiences of 10 individuals with cerebral palsy and complex communication needs. Appl Nurs Res, 20:2, pp. 56-62.
3. Buzio, A., Morgan, J. and Blount, D. (2002) The experiences of adults with cerebral palsy during periods of hospitalisation. Aus J Advan Nurs, 19:4, pp. 8-14.
4. Iacono, T. and Davis, R. (2003) The experiences of people with developmental disability in Emergency Departments and hospital wards. Res Dev Disabil, 24:4, pp. 247-264.
5. Kroll, T., Jones, G. C., Kehn, M. and Neri, M. (2006) T. Barriers and strategies affecting the utilization of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community, 14:4, pp. 284-293.
6. Robillard, A. B. (1999) Meaning of a disability: The lived experience of paralysis, Temple University Press, Philadelphia
7. Nosek, M. A., Hughes, R. B., Howland, C. A. and Shelton, M. L. (2004) The meaning of health for women with physical disabilities. Family Community Health, 27:1, pp. 6-21.
8. Sowney, M. and Barr, O. G. (2006) Caring for adults with intellectual disabilities: Perceived challenges for nurses in accident and emergency units. J Advan Nurs, 55:1, pp. 36-45.
9. Balandin, S., Dew, A., Llewellyn, G. and Kendig, H. (2004) Communicating in hospital without functional speech. J Intellect Disabil Res, 48, p. 425.
10. Law, J., Bunning, K., Byng, S., Farrelly, S. and Heyman, B. (2004) Making sense in primary care: Leveling the playing field for people with communication difficulties. Disabil Soc, 20:2, pp. 169-184.
11. Melville, C. (2004) Discrimination and health inequalities experienced by disabled people. Med Educat, 39, pp. 122-126.
12. Young, N. L., Steele, C., Fehlings, D., Jutal, J., Olmsted, N. and Williams, J. I. (2005) Use of health care among adults with chronic and complex physical disabilities of childhood. Disabil Rehabil, 27:23, pp. 1455-1460.
13. Hemsley, B. and Balandin, S. (2004) Without AAC: The stories of unpaid carers of adults with cerebral palsy and CCN in hospital. AugmentAlternat Commun, 20, pp. 243-258.
14. Hemsley, B., Balandin, S. and Togher, L. (2007) Narrative analysis of the hospital experience for older parents of people who cannot speak. J Aging Stud, 21, pp. 239-254.
15. Nolan, M., Grant, G. and Keady, J. (1996) Understanding family care, Open University Press, Buckingham
16. Disability, Ageing and Carers: Summary of Findings. Cat. No. 4430.0. [Internet] (2003) Australian Bureau of Statistics, Australian Bureau of Statistics, Canberra
17. Just, A. C. (2005) Parent participation in care: Bridging the gap in the pediatric ICU. Newborn Infant Nurs Rev, 5:4, pp. 179-187.
18. Kirk, S. (2001) Negotiating lay and professional roles in the care of children with complex health needs. J Advan Nurs, 34:5, pp. 593-602.
19. Llewellyn, G., Gething, L., Kendig, H. and Cant, R. (2004) Older parent caregivers' engagement with the service system. Am J Mental Retardation, 109:5, pp. 279-296.
20. Bigby, C. (2000) Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities, McLennan and Petty, New South Wales
21. Grant, G., Nolan, M. and Keady, J. (2003) Supporting families over the life course: Mapping temporality. J Intellectual Disabil Res, 47:45, pp. 342-351.
22. Kyle, T. V. (1995) The concept of caring: A review of the literature. J Advan Nurs, 21, pp. 506-514.
23. McCance, T. V., McKenna, H. P. and Boore, J. P. (1999) Caring: Theoretical perspectives of relevance to nursing. J Advan Nurs, 30:6, pp. 1388-1395.
24. Allen, D. (2000) Negotiating the role of expert carers on an adult hospital ward. Sociol Health Illness, 22:2, pp. 149-171.
25. Pickard, S., Shaw, S. and Glendinning, C. (2000) Health care professionals' support for older carers. Ageing Society, 20, pp. 725-744.
26. Wrubel, J., Richards, T. A., Folkman, S. and Acree, M. (2000) Tacit definitions of informal caregiving. J Advan Nurs, 33:2, pp. 175-181.
27. May, J., Ellis-Hill, C. and Payne, S. (2001) Gatekeeping and legitimization: How informal carers' relationship with health care workers is revealed in their everyday interactions. [see comment]. J Advan Nurs, 36:3, pp. 364-375.
28. Nolan, M., Keady, J. and Grant, G. (1995) Developing a typology of family care: Implications for nurses and other service providers. J Advan Nurs, 21, pp. 256-265.
29. American Psychological Association (2003) Publication Manual of the American Psychological Association., American Psychological Association, Washington
30. Walker, E. and Dewar, B. J. (2001) How do we facilitate carers' involvement in decision-making?. J Advan Nurs, 34:3, pp. 329-337.
31. 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
32. Ygge, B. M., Lindholm, C. and Arnetz, J. (2005) Hospital staff perceptions of parental involvement in paediatric hospital care. J Advan Nurs, 53:5, pp. 534-542.
33. Heaton, J., Arksey, H. and Sloper, P. (1999) 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, 7:2, pp. 91-99.
34. Dewar, B., Tocher, R. and Watson, W. (2003) Enhancing partnerships with relatives in care settings for older people. Nurs Standard, 17:40, pp. 33-39.
35. Hemsley, B., Sigafoos, J., Balandin, S., Forbes, R., Taylor, C., Green, V. and Parmenter, T. (2001) Nursing the patient with severe communication impairment. J Advan Nurs, 35:6, pp. 827-835.
36. Hemsley, B., Balandin, S. and Sheard, C. (2004) Older parent carers of adults with complex communication needs and their experiences in providing unpaid care in hospital. J Intellect Disabil Res, 48, p. 425.
37. Balandin, S. and Raghavendra, P. Challenging oppression: Augmented communicators' involvement in AAC research. Augmentative and alternative communication: New directions in research and practice, pp. 262-277. Whurr Publishers, London
38. Bersani Jr, H. (1999) Nothing about me without me: A proposal for participatory action research in AAC. Augmentative and alternative communication: New directions in research and practice, pp. 278-289. Whurr Publishers, London
39. Jarrett, N. and Payne, S. (1994) A selective review of the literature on nurse-patient communication: Has the patient's contribution been neglected?. J Advan Nurs, 22, pp. 72-78.
40. Hemsley, B., Balandin, S. and Togher, L. (2007) Older unpaid carers' experiences supporting adults with cerebral palsy and complex communication needs in hospital. J Dev Phys Disabil, 19:2, pp. 115-124.
41. Morgan, D. L. (1988) Focus groups as qualitative research, Sage, Newbury Park, CA
42. Morgan, D. L. and Krueger, R. A. (1988) The Focus Group Kit, Sage, Thousand Oaks, CA
43. Hemsley, B., Balandin, S. and 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.
44. Barbour, R. S. and Kitzinger, J. (1999) Introduction: The challenge and promise of focus groups. Developing focus group research: Politics, theory and practice, pp. 1-20. Sage, London
45. Krueger, R. A. (1994) Focus groups: A practical guide for applied research., Sage, Thousand Oaks, CA
46. Krueger, R. A. (1998) Moderating focus groups. The focus group kit, 4, Sage, Thousand Oaks, CA
47. Murphy, J. (2006) Perceptions of communication between people with communication disability and general practice staff. Health Expectations, 9, pp. 49-59.
48. Beukelman, D. and Mirenda, P. (2005) Augmentative and alternative communication: Supporting children and adults with complex communication needs., Paul H. Brookes Publishing Company, Baltimore
49. Kent-Walsh, J. and McNaughton, D. (2005) Communication partner instruction in augmentative and alternative communication: Present practices and future directions. Augment Alternat Commun, 21:3, pp. 195-204.
50. Light, J. (1988) Interaction involving individuals using AAC systems: State of the art and future directions. Augment Alternat Comm, 4, pp. 66-82.
51. Light, J. (1997) Communication is the essence of human life: Reflections on communicative competence. Augment Alternat Comm, 13, pp. 61-70.
52. QSR (1999) QSR NVivo®, QSR International Pty. Ltd, Doncaster, Victoria
53. Kitzinger, J. (1994) The methodology of focus groups: The importance of interaction between research participants. Sociol Health Illness, 16:1, pp. 103-121.
54. Stevens, P. E. (1996) Focus groups: Collecting aggregate-level data to understand community health phenomena. Public Health Nurs, 13, pp. 170-176.
55. Patton, M. Q. (2005) Qualitative research and evaluation methods., Sage Publications, Inc, Thousand Oaks, CA
56. Balandin, S., Hemsley, B., Sigafoos, J., Green, V., Forbes, R., Taylor, C. and Parmenter, T. (2001) Communicating with nurses: The experiences of 10 individuals with an acquired severe communication impairment. Brain Impairment, 2:2, pp. 109-118.
57. Eddey, G. E. and Robey, K. L. (2005) Considering the culture of disability in cultural competence education. Acad Med, 80, pp. 706-712.
58. Fitton, P. (1994) Listen to me: Communicating the needs of people with profound intellectual and multiple disabilities, Jessica Kingsley Publishers Ltd, London