Narrative analysis of the hospital experience for older parents of people who cannot speak

Journal of Aging Studies

Volumn 21, Issue 3, 2007, Pages 239-254

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

^a UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Aging; Cerebral palsy; Complex communication needs; Developmental disability; Hospitalization; Parents; Unpaid carers

Indexed keywords

EID: 34250885108     PISSN: 08904065     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jaging.2006.12.001     Document Type: Article

References (67)

1. Allen D. Negotiating the role of expert carers on an adult hospital ward. Sociology of Health and Illness 22 2 (2000) 149-171
2. Australian Bureau of Statistics. Disability, ageing and carers: Summary of findings. Cat. No. 4430.0 (2003)
3. Australian Institute of Health and Welfare. Disability prevalence and trends (2003), Australian Institute for Health and Welfare, Canberra
4. Australian Institute of Health and Welfare. Carers in Australia: Assisting frail older people and people with a disability (2004), Australian Institute of Health and Welfare, Canberra
5. American Psychological Association. Publication manual of the american psychological association. Fifth Edition (2003), American Psychological Association, Washington
6. Armitage S.K., and Kavanagh K.M. Consumer-orientated outcomes in discharge planning: A pilot study. Journal of Clinical Nursing Inquiry 6 7 (1998) 67-74
7. Bakheit A.M.O., Bower E., Cosgrove A., Fox M., Morton R., Phillips S., Scrutton D., Shrubb V., and Yude C. Opinion statement on the minimal acceptable standards of healthcare in cerebral palsy. Disability and Rehabilitation 23 13 (2001) 578-582
8. Balandin S. Message from the President. The Bulletin ISAAC 67 (2002) 2
9. Balandin S., Dew A., Llewellyn G., and Kendig H. Communicating in hospital without functional speech. Journal of Intellectual Disability Research 48 (2004) 425-443
10. S. Balandin, B. Hemsley, J. Sigafoos and V. Green (in press). Communication with nurses: The experiences of 10 individuals with cerebral palsy and complex communication needs. Applied Nursing Research.
11. Balandin S., Hemsley B., Sigafoos J., Green V., Forbes R., Taylor C., and Parmenter T. Communicating with nurses: The experiences of 10 individuals with an acquired severe communication impairment. Brain Impairment 2 2 (2001) 109-118
12. Balling K., and McCubbin M. Hospitalized children with chronic illness: Parental caregiving needs and valuing parental expertise. Journal of Pediatric Nursing 16 2 (2001) 110-119
13. Banks M.E. Disability in the family: A life-span perspective. Cultural Diversity and Ethnic Minority 9 4 (2003) 367-384
14. Baruch G. Moral tales: Parents' stories of encounters with the health professions. Sociology of Health & Illness 3 3 (1981) 275-295
15. Bigby C. Parental substitutes? The role of siblings in the lives of older people with intellectual disability. Journal of Gerontological Social Work 29 1 (1998) 3-21
16. Bigby C. Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities (2000), Mclennan+Petty, New South Wales
17. Bigby C., Ozanne E., and Gordon M. Facilitating transition: Elements of successful case management practice for older parents of adults with intellectual disability. Journal of Gerontological Nursing 37 3 (2002) 25-43
18. Bogdan R., and Taylor S. Relationships with severely disabled people: The social construction of humanness. Social Problems 36 2 (1989) 135-148
19. Buzio A., Morgan J., and Blount D. The experiences of adults with cerebral palsy during periods of hospitalisation. Australian Journal of Advanced Nursing 19 4 (2002) 8-14
20. Cooney T.M., and Uhlenberg P. Support from parents over the lifespan: Perspectives of adult children. Social Forces 71 1 (1992) 63-84
21. Curran A.L., Sharples P.M., White C., and Knapp M. Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Developmental Medicine & Child Neurology 43 (2001) 529-533
22. Dew A., Llewellyn G., and Balandin S. Post-Parental care: A new generation of sibling carers. Journal of Intellectual and Developmental Disability 29 (2004) 176-179
23. Driscoll A. Managing post-discharge care at home: An analysis of patients' and their carers' perceptions of information received during their stay in hospital. Journal of Advanced Nursing 31 5 (2000) 1165-1173
24. Efraimsson E., Sandman P.O., Hyde'n L.-C., and Rasmussen B.H. Discharge planning: 'fooling ourselves?' - Patient participation in conferences. Journal of Clinical Nursing 13 (2004) 562-570
25. Espezel H.J.E., and Canam C.J. Parent-nurse interactions: Care of hospitalized children. Journal of Advanced Nursing 44 1 (2003) 34-41
26. Fegran L., Helseth S., and Slettebo A. Nurses as moral practitioners encountering parents in neonatal intensive care units. Nursing Ethics 13 1 (2006) 52-64
27. Fitton P. Listen to me: Communicating the needs of people with profound intellectual and multiple disabilities (1994), Jessica Kingsley Publishers Ltd, London
28. Fox D., and Wilson D. Parents' experiences of general hospital admission for adults with learning disabilities. Journal of Clinical Nursing 8 (1999) 610-614
29. Gabriel Z., and Bowling A. Quality of life in old age from the perspectives of older people. In: Walker A., and Hennessy C.H. (Eds). Growing older: quality of life in old age Vol. 9 (2004), Open University Press, Maidenhead, England 14-34
30. Goodfellow J. Constructing a narrative. In: Higgs J. (Ed). Writing qualitative research Vol. 2 (1998), Hampden Press, Sydney 175-189
31. Grant G. Elderly parents with handicapped children: Anticipating the future. Journal of Aging Studies 4 4 (1990) 359-374
32. Grant G., Nolan M., and Keady J. Supporting families over the life course: Mapping temporality. Journal of Intellectual Disability Research 47 4/5 (2003) 342-351
33. Grant G., Ramcharan P., McGrath M., Nolan M., and Keady J. Rewards and gratifications among family caregivers: Towards a refined model of caring and coping. Journal of Intellectual Disability Research 42 Pt 1 (1998) 58-71
34. Hallstrom I., and Elander G. Decision-making during hospitalization: Parents' and children's involvement. Journal of Clinical Nursing 13 (2004) 367-375
35. Hayes V.E., and Knox J.E. The experience of stress in parents of children hospitalized with long-term disabilities. Journal of Advanced Nursing 9 (1984) 333-341
36. Heaton J., Arksey H., and Sloper P. Carers' experiences of hospital discharge and continuing care in the community. Health and Social Care in the Community 7 2 (1999) 91-99
37. Hemsley B., and Balandin S. Without AAC: The stories of unpaid carers of adults with cerebral palsy and CCN in hospital. AAC Augmentative and Alternative Communication 20 4 (2004) 243-258
38. Hemsley B., Balandin S., and Sheard C. Older parent carers of adults with CCN and their experiences in providing unpaid care in hospital. Journal of Intellectual Disability Research 48 (2004) 425
39. Hemsley B., Balandin S., and Togher L. Older unpaid carers' experiences of supporting adults with cerebral palsy and complex communication needs in hospital. Journal of Developmental and Physical Disabilities 19 (2007) 115-124
40. Hemsley B., Sigafoos J., Balandin S., Forbes R., Taylor C., Green V., and Parmenter T. Nursing the patient with severe communication impairment. Journal of Advanced Nursing 35 6 (2001) 827-835
41. Heron C. Working with carers (1998), Jessica Kingsley Publishers, London
42. Huer M.B., and Lloyd L. AAC users' perspectives on augmentative and alternative communication. Augmentative and Alternative Communication 6 4 (1990) 242-249
43. In: Holstein J.A., and Gubrium J.F. (Eds). The active interview (1995), SAGE Publications, Inc, Thousand Oaks, California
44. Iacono T., and Davis R. The experiences of people with developmental disability in Emergency Departments and hospital wards. Research in Developmental Disability 24 (2003) 247-264
45. Just A.C. Parent participation in care: Bridging the gap in the pediatric ICU. Newborn and Infant Nursing Reviews 5 4 (2005) 179-187
46. Kearney P., Nagy S., Wright H., and Firkins A. These sorts of kids. Children on the margin. 8th National Conference of the Association for the Welfare of Child Health. Sydney, Australia, 11-12 October (2001)
47. Kersten P., McLellan L., George S., Mullee M.A., and Smith J.A.E. Needs of carers of severely disabled people: Are they identified and met adequately?. Health and Social Care in the Community 9 4 (2001) 235-243
48. Kirk S. Negotiating lay and professional roles in the care of children with complex health needs. Journal of Advanced Nursing 34 5 (2001) 593-602
49. Krujiver I.P.M., Kerkstra A., Francke A.L., Bensing J.M., and van de Wiel H.B.M. Evaluation of communication training programs in nursing care: A review of the literature. Patient Education and Counseling 39 (2000) 121-145
50. Labov W. Some further steps in narrative analysis. The Journal of Narrative and Life History 7 1-4 (1997) 395-415
51. Llewellyn G., Gething L., Kendig H., and Cant R. Older parent caregivers' engagement with the service system. American Journal on Mental Retardation 109 5 (2004) 279-296
52. McCallion P., and Tobin S.S. Social workers' perceptions of older parents caring at home for sons and daughters with developmental disabilities. Mental Retardation 33 (1995) 153-162
53. Melville C., Finlayson J., Cooper S.-A., Allan L., et al. Enhancing primary health care services for adults with intellectual disabilities. Journal of Intellectual Disability Research 49 3 (2005) 190-198
54. Murphy J. Perceptions of communication between people with communication disability and general practice staff. Health Expectations 9 (2006) 49-59
55. Nolan M., and Lundh U. Satisfactions and coping strategies of family carers. British Journal of Community Nursing 4 9 (1999) 470-475
56. NSW Department of Health. Policy directive. Disability - people with disabilities: responding to their needs during hospitalisation (2005), NSW Department of Health Policy Division. http://www.health.nsw.gov.au/policies http://www.health.nsw.gov.au/policies
57. Patton M.Q. Qualitative research and evaluation methods. 3rd ed. (2002), Sage Publications, Inc, Thousand Oaks, California
58. Phua V., Reid S.M., Walstab J.E., and Reddihough D.S. Inpatient care of children with cerebral palsy as perceived by their parents. Journal of Paediatric and Child Health 41 (2005) 432-436
59. Polkinghorne D.E. Narrative knowing and the human sciences (1988), State University of New York Press, Albany, NY, US 18
60. Riessman C.K. Narrative analysis Vol. 30 (1993), Sage Publications, Newbury Park, CA
61. Robinson C.A. When hospitalization becomes an everyday thing. Comprehensive Pediatric Nursing 7 6 (1984) 363-370
62. Robinson C.A. Double bind: A dilemma for parents of chronically ill children. Pediatric Nursing 11 2 (1985) 112-115
63. Simpson R., Scothern G., and Vincent M. Survey of carer satisfaction with the quality of care delivered to inpatients suffering from dementia. Journal of Advanced Nursing 22 3 (1995) 517-527
64. Strauss D., Ojdana K., Shavelle R., and Rosenbloom L. Decline in function and life expectancy of older persons with cerebral palsy. NeuroRehabilitation 19 1 (2004) 69-78
65. Walker E., and Dewar B.J. How do we facilitate carers' involvement in decision making?. Journal of Advanced Nursing 34 3 (2001) 329-337
66. Ygge B.M., Lindholm C., and Arnetz J. Hospital staff perceptions of parental involvement in paediatric hospital care. Journal of Advanced Nursing 53 5 (2006) 534-542
67. Young N.L., Steele C., Fehlings D., Jutal J., Olmsted N., and Williams J.I. Use of health care among adults with chronic and complex physical disabilities of childhood. Disability and Rehabilitation 27 23 (2005) 1455-1460