Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital
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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.
- Adubato, S. (2004). Making the communication connection. Nursing Management, 35, 33–35.
- 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. CrossRef
- 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. CrossRef
- Armitage, S. K., & Kavanagh, K. M. (1998). Consumer-orientated outcomes in discharge planning: a pilot study. Journal of Clinical Nursing Inquiry, 7, 67–74. CrossRef
- Atkinson, F. I. (1992). Experiences of informal carers providing nursing support for disabled dependants. Journal of Advanced Nursing, 17(7), 835–840. CrossRef
- Australian Institute of Health and Welfare (2003). Disability prevalence and trends. Canberra: Australian Institute for Health and Welfare.
- 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.
- Balandin, S. (2002). Message from the President. International Society for Augmentative and Alternative Communication Bulletin, 67, 2.
- Balandin, S., Dew, A., Llewellyn, G., & Kendig, H. (2004). Communicating in hospital without functional speech. Journal of Intellectual Disability Research, 48, 425–443. CrossRef
- 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. CrossRef
- Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What’s happening? Journal of Intellectual and Developmental Disability, 22(2), 109–124. CrossRef
- Balandin, S., & Morgan, J. (2001). Preparing for the future: Aging and AAC. Augmentative and Alternative Communication, 17, 99–108.
- Beange, H., & Lennox, N. (1998). Physical aspects of health in the learning disabled. Current Opinion in Psychiatry, 11(5), 531–534. CrossRef
- 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.
- 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. CrossRef
- 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.
- 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.
- 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.
- Dewing, J. (1991). Physically disabled people in acute care. Nursing Standard, 5(22), 37–39.
- 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. CrossRef
- Fitton, P. (1994). Listen To Me: Communicating the needs of people with profound intellectual and multiple disabilities. London: Jessica Kingsley Publishers Ltd.
- 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.
- 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. CrossRef
- 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. CrossRef
- 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. CrossRef
- 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. CrossRef
- 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. CrossRef
- Heron, C. (1998). Working with carers. London: Jessica Kingsley Publishers.
- 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. CrossRef
- 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.
- Klingbeil, H., Baer, R., & Wilson, P. E. (2004). Aging with a disability. Archives of Physical Medicine & Rehabilitation., 85(S3), S68–73, p. S69. CrossRef
- 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. CrossRef
- McKay, B., North, N., & Murray-Sykes, K. (1983, November 30). The effect on carers of hospital admission of the elderly. Nursing Times, 42–43.
- 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. CrossRef
- 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.
- Pickard, S., Shaw, S., & Glendinning, C. (2000). Health care professionals’ support for older carers. Ageing and Society, 20, 725–744. CrossRef
- Polkinghorne, D. E. (1995). Narrative configuration in qualitative analysis. Qualitative Studies in Education, 8(1), 5–23.
- 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. CrossRef
- Rapp, C. E., Jr., & Torres, M. M. (2000). The adult with cerebral palsy. Archives of Family Medicine, 9(5), 466–472. CrossRef
- 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.
- 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.
- 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. CrossRef
- 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. CrossRef
- 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.
- Vargus-Adams, J. (2005). Health-related quality of life in childhood cerebral palsy. Archives of Physical Medicine and Rehabilitation, 86, 940–945. CrossRef
- Older Unpaid Carers’ Experiences Supporting Adults with Cerebral Palsy and Complex Communication Needs in Hospital
Journal of Developmental and Physical Disabilities
Volume 19, Issue 2 , pp 115-124
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- Kluwer Academic Publishers-Plenum Publishers
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- Complex communication needs
- Cerebral palsy