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Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital

  • Bronwyn Hemsley
  • Susan Balandin
  • Leanne Togher
Original Article

Abstract

Older unpaid carers provide vital support to their adult sons or daughters with cerebral palsy who have complex communication needs during hospital stays. To date, there is little research into their experiences or the impact of providing such care on the carer and other family members. Knowledge of the experiences of the older unpaid carer is needed to inform development of a) strategies for supporting older carers of adults with disability who are unable to speak in hospital, and b) other alternatives for provision of support to these adults during periods of hospitalization. Such information could be used in training health care providers to adequately care for the adult with cerebral palsy and complex communication needs when the older carer is no longer able to provide support. This review will summarize the literature relating to older unpaid carers of adults with cerebral palsy and complex communication needs in hospital, and identify directions for future research and development in the field of supporting older carers of adults with complex communication needs.

Keywords

Complex communication needs Carers Cerebral palsy Ageing Hospitalization 

Notes

Acknowledgements

This paper is based on doctoral research being undertaken at The University of Sydney by the first author under the supervision of the second and third authors. The project is funded in part by a Public Health Scholarship awarded to the first author from the National Health and Medical Research of Australia.

References

  1. Adubato, S. (2004). Making the communication connection. Nursing Management, 35, 33–35.PubMedGoogle Scholar
  2. Alsop-Shields, L., & Mohay, H. (2001). John Bowlby and James Robertson: theorists, scientists and crusaders for improvements in the care of children in hospital. Journal of Advanced Nursing, 35(1), 50–58.PubMedCrossRefGoogle Scholar
  3. Andersson, C., & Mattsson, E. (2001). Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion [see comment]. Developmental Medicine & Child Neurology, 43(2), 76–82.CrossRefGoogle Scholar
  4. Armitage, S. K., & Kavanagh, K. M. (1998). Consumer-orientated outcomes in discharge planning: a pilot study. Journal of Clinical Nursing Inquiry, 7, 67–74.CrossRefGoogle Scholar
  5. Atkinson, F. I. (1992). Experiences of informal carers providing nursing support for disabled dependants. Journal of Advanced Nursing, 17(7), 835–840.PubMedCrossRefGoogle Scholar
  6. Australian Institute of Health and Welfare (2003). Disability prevalence and trends. Canberra: Australian Institute for Health and Welfare.Google Scholar
  7. Australian Institute of Health and Welfare (2004). Carers in Australia: assisting frail older people and people with a disability. Canberra: Australian Institute of Health and Welfare.Google Scholar
  8. Balandin, S. (2002). Message from the President. International Society for Augmentative and Alternative Communication Bulletin, 67, 2.Google Scholar
  9. Balandin, S., Dew, A., Llewellyn, G., & Kendig, H. (2004). Communicating in hospital without functional speech. Journal of Intellectual Disability Research, 48, 425–443.CrossRefGoogle Scholar
  10. Balandin, S., Hemsley, B., Sigafoos, J., Green, V., Forbes, R., Taylor, C., et al. (2001). Communicating with Nurses: The Experiences of 10 Individuals with an Acquired Severe Communication Impairment. Brain Impairment, 2(2), 109–118.CrossRefGoogle Scholar
  11. Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What’s happening? Journal of Intellectual and Developmental Disability, 22(2), 109–124.CrossRefGoogle Scholar
  12. Balandin, S., & Morgan, J. (2001). Preparing for the future: Aging and AAC. Augmentative and Alternative Communication, 17, 99–108.Google Scholar
  13. Beange, H., & Lennox, N. (1998). Physical aspects of health in the learning disabled. Current Opinion in Psychiatry, 11(5), 531–534.CrossRefGoogle Scholar
  14. Beange, H., McElduff, A., & Baker, W. (1995). Medical disorders of adults with mental retardation: a population study. American Journal on Mental Retardation, 99(6), 595–604.PubMedGoogle Scholar
  15. Bigby, C. (1997). Parental substitutes? The role of siblings in the lives of older people with intellectual disability. Journal of Gerontological Social Work, 29(1), 3–21.CrossRefGoogle Scholar
  16. Bigby, C. (2000). Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities. New South Wales: McLennan and Petty.Google Scholar
  17. Buzio, A., Morgan, J., & Blount, D. (2002). The experiences of adults with cerebral palsy during periods of hospitalisation. Australian Journal of Advanced Nursing, 19(4), 8–14.PubMedGoogle Scholar
  18. Crichton, J. U., Mackinnon, M., & White, C. P. (1995). The life expectancy of persons with cerebral palsy. Developmental Medicine and Child Neurology, 37, 567–576.PubMedGoogle Scholar
  19. Dewing, J. (1991). Physically disabled people in acute care. Nursing Standard, 5(22), 37–39.PubMedGoogle Scholar
  20. Efraimsson, E., Sandman, P. O., Hydén, L. C., & Rasmussen, B. H. (2004). Discharge planning: ‘fooling ourselves?’—patient participation in conferences. Journal of Clinical Nursing, 13, 562–570.PubMedCrossRefGoogle Scholar
  21. Fitton, P. (1994). Listen To Me: Communicating the needs of people with profound intellectual and multiple disabilities. London: Jessica Kingsley Publishers Ltd.Google Scholar
  22. Gabriel, Z., & Bowling, A. (2004). Quality of life in old age from the perspectives of older people. In A. Walker & C. H. Hennessy, (Eds.), Growing older: quality of life in old age (Vol. 9, pp. 14–34). Maidenhead, England: Open University Press.Google Scholar
  23. Grant, G., Ramcharan, P., McGrath, M., Nolan, M., & Keady, J. (1998). Rewards and gratifications among family caregivers: towards a refined model of caring and coping. Journal of Intellectual Disability Research, 42(Pt 1), 58–71.PubMedCrossRefGoogle Scholar
  24. Hayes, V. E., & Knox, J. E. (1984). The experience of stress in parents of children hospitalized with long-term disabilities. Journal of Advanced Nursing, 9, 333–341.PubMedCrossRefGoogle Scholar
  25. Hemsley, B., & Balandin, S. (2004). Without AAC: The Stories of Unpaid Carers of Adults with Cerebral Palsy and Complex Communication Needs in Hospital. Augmentative and Alternative Communication, 20(4), 243–258, p. 247.CrossRefGoogle Scholar
  26. Hemsley, B., Balandin, S., & Sheard, C. (2004). Older parent carers of adults with complex communication needs and their experiences in providing unpaid care in hospital. Journal of Intellectual Disability Research, 48, 425.CrossRefGoogle Scholar
  27. Hemsley, B., Sigafoos, J., Balandin, S., Forbes, R., Taylor, C., Green, V. A., et al. (2001). Nursing the patient with severe communication impairment. Journal of Advanced Nursing, 35(6), 827–835.PubMedCrossRefGoogle Scholar
  28. Heron, C. (1998). Working with carers. London: Jessica Kingsley Publishers.Google Scholar
  29. Kapell, D., Nightingale, B., Rodriguez, A., Lee, J. H., Zigman, W. B., & Schupf, N. (1998). Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population. Mental Retardation, 36(4), 269–279.PubMedCrossRefGoogle Scholar
  30. Kearney, P., Nagy, S., Wright, H., & Firkins, A. (2001, 11–12 October). These sorts of kids… Paper presented at the Children on the margin, 8th National Conference of the Association for the Welfare of Child Health (AWCH). Powerhouse Museum, Sydney.Google Scholar
  31. Klingbeil, H., Baer, R., & Wilson, P. E. (2004). Aging with a disability. Archives of Physical Medicine & Rehabilitation., 85(S3), S68–73, p. S69.CrossRefGoogle Scholar
  32. Livesley, J. (2005). Telling tales: a qualitative exploration of how children’s nurses interpret work with unaccompanied hospitalized children. Journal of Clinical Nursing, 14, 43–50.PubMedCrossRefGoogle Scholar
  33. McKay, B., North, N., & Murray-Sykes, K. (1983, November 30). The effect on carers of hospital admission of the elderly. Nursing Times, 42–43.Google Scholar
  34. Mutch, L., Alberman, E., Hagberg, B., Kodama, K., & Velickovic, M. (1992). Cerebral palsy epidemiology: where are we now and where are we going? Developmental Medicine & Child Neurology, 34, 547–555.CrossRefGoogle Scholar
  35. Overeynder, J., Turk, M., Dalton, A. J., & Janicki, M. P. (1992). I’m worried about the future: The aging of adults with cerebral palsy. Albany, New York: New York State Developmental Disabilities Planning Council.Google Scholar
  36. Pickard, S., Shaw, S., & Glendinning, C. (2000). Health care professionals’ support for older carers. Ageing and Society, 20, 725–744.CrossRefGoogle Scholar
  37. Polkinghorne, D. E. (1995). Narrative configuration in qualitative analysis. Qualitative Studies in Education, 8(1), 5–23.Google Scholar
  38. Raina, P., O’Donnell, M., Rosenbaum, P., Brehau, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, 626–636.CrossRefGoogle Scholar
  39. Rapp, C. E., Jr., & Torres, M. M. (2000). The adult with cerebral palsy. Archives of Family Medicine, 9(5), 466–472.PubMedCrossRefGoogle Scholar
  40. Robinson, A., Oxnam, C., Kelly, S., Broadbent, J., & Dillon, M. (1993). A study into nursing children with disabilities in an acute care context: The 3W Disability Awareness Group research report. Melbourne: Centre for Studies in Paediatric Nursing, Royal Children’s Hospital Melbourne.Google Scholar
  41. Scherzer, A. L. (Ed.). (2001). Early diagnosis and interventional therapy in cerebral palsy: An interdisciplinary age-focused approach (3rd ed.). New York: Marcel Dekker, Inc.Google Scholar
  42. Simpson, R., Scotern, G., & Vincent, M. (1995). Survey of carer satisfaction with the quality of care delivered to inpatients suffering from dementia. Journal of Advanced Nursing, 22(3), 517–527.PubMedCrossRefGoogle Scholar
  43. Slevin, E., & Sines, D. (1996). Attitudes of nurses in a general hospital towards people with learning disabilities: influences of contact, and graduate-non-graduate status, a comparative study. Journal of Advanced Nursing, 24(6), 1116–1126.PubMedCrossRefGoogle Scholar
  44. Strauss, D., Ojdana, K., Shavelle, R., & Rosenbloom, L. (2004). Decline in function and life expectancy of older persons with cerebral palsy. NeuroRehabilitation, 19(1), 69–78.PubMedGoogle Scholar
  45. Vargus-Adams, J. (2005). Health-related quality of life in childhood cerebral palsy. Archives of Physical Medicine and Rehabilitation, 86, 940–945.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2007

Authors and Affiliations

  • Bronwyn Hemsley
    • 1
  • Susan Balandin
    • 1
  • Leanne Togher
    • 1
  1. 1.Discipline of Speech Pathology, Faculty of Health SciencesThe University of Sydney, Cumberland CampusLidcombeAustralia

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