Nursing the patient with developmental disability in hospital: Roles of paid carers

Qualitative Health Research

Volumn 21, Issue 12, 2011, Pages 1632-1642

  Hemsley, Bronwyn ^a   Balandin, Susan ^b   Worrall, Linda ^a  

^a UNIVERSITY OF QUEENSLAND   (Australia)

^b MOLDE UNIVERSITY COLLEGE   (Norway)

Author keywords

communication; disability, developmental; health care, acute critical; narrative inquiry; nursing; workplace

Indexed keywords

ADULT; AGED; ARTICLE; AUSTRALIA; CAREGIVER; DEVELOPMENTAL DISORDER; ECONOMICS; HEALTH PERSONNEL ATTITUDE; HOSPITAL; HUMAN; HUMAN RELATION; INTERVIEW; MIDDLE AGED; NURSING; PATIENT SATISFACTION; PROFESSIONAL STANDARD; PSYCHOLOGICAL ASPECT; PUBLIC RELATIONS; VOLUNTARY WORKER;

ADULT; AGED; ATTITUDE OF HEALTH PERSONNEL; CAREGIVERS; DEVELOPMENTAL DISABILITIES; HOSPITALS; HUMANS; INTERPROFESSIONAL RELATIONS; INTERVIEWS AS TOPIC; MIDDLE AGED; PATIENT SATISFACTION; PROFESSIONAL ROLE; PROFESSIONAL-PATIENT RELATIONS; QUEENSLAND; VOLUNTARY WORKERS;

EID: 82655171882     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732311415289     Document Type: Article

References (35)

1. Allen S. Community care for people with disability: Blurring boundaries between formal and informal caregivers. Qualitative Health Research. 2003 ; 13: 207-226 (Pubitemid 44534790)
2. Aronson J., Neysmith S. M. "You're not just in there to do the work": Depersonalizing policies and the exploitation of home care workers' labour. Gender & Society. 1996 ; 10 (1). 59-77
3. Australian Bureau of Statistics. (2003). Disability, ageing and carers. Catalogue 44300.0. Retrieved from http://www.abs.gov.au/ausstats/absat.nsf/mf/ 4430.0
4. Balandin S., Hemsley B., Sigafoos J., Green V. Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs. Applied Nursing Research. 2007 ; 20 (2). 56-62
5. Bartlett G., Blais R., Tamblyn R., Clermont R. J., MacGibbon B. Impact of patient communication problems on the risk of preventable adverse events in acute care settings. CMAJ: Canadian Medical Association Journal. 2008 ; 178 (12). 155-162
6. BuzioA.MorganJ.BlountD. (2002). The experiences of adults with cerebral palsy during periods of hospitalisation. Australian Journal of Advanced Nursing, 19(4), 8-14. Retrieved from http://www.ajan.com.au/Vol19/Vol19.4-1.pdf
7. Fitton P. Listen to me: Communicating the needs of people with profound intellectual and multiple disabilities. London: Jessica Kingsley ; 1994 :
8. Gibbs S. M., Brown M. J., Muir W. J. The experiences of adults with intellectual disabilities and their carers in general hospitals: A focus group study. Journal of Intellectual Disability Research. 2008 ; 52: 1061-1077
9. Hemsley B., Balandin S. Without AAC: The stories of unpaid carers of adults with cerebral palsy and complex communication needs in hospital. Augmentative and Alternative Communication. 2004 ; 19: 115-124
10. Hemsley B., Balandin S., Togher L. Narrative analysis of the hospital experience for older parents of people who cannot speak. Journal of Aging Studies. 2007 ; 21: 239-254
11. Hemsley B., Balandin S., Togher L. Family caregivers discuss roles and needs in supporting adults with cerebral palsy and complex communication needs in the hospital setting. Journal of Developmental and Physical Disabilities. 2008a ; 20: 257-274
12. Hemsley B., Balandin S., Togher L. Professionals' views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital. Journal of Intellectual & Developmental Disability. 2008b ; 33 (2). 127-136 (Pubitemid 351882289)
13. Hemsley B., Balandin S., Togher L. "We need to be the centerpiece." Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital. Disability and Rehabilitation. 2008c ; 30 (23). 1759-1771
14. Paid care in Australia: Politics, profits, practices. King D. Meagher G., ed. Sydney, Australia: Sydney University Press ; 2009 :
15. Koskie J., Freeze R. A critique of multidisciplinary teaming: Problems and possibilities. Developmental Disabilities Bulletin. 2000 ; 28 (1). 1-17
16. Labour Code of 1973. Code du Travail. Article L-230-2 paragraph 1, Government of France. (2011). Retrieved from http://droit-finances. commentcamarche.net/legifrance/61-code-du-travail/161712/article-l230-2
17. Labov W. Some further steps in narrative analysis. Journal of Narrative and Life History. 1997 ; 7 (1-4). 395-415
18. Lewin Group. (2008). A synthesis of direct service workforce demographics and challenges across intellectual/developmental disabilities, aging, physical disabilities and behavioral health. Washington, DC: Author. Retrieved from http://rtc.umn.edu/docs/Cross-DisabilitySynthesisWhitePaperFinal.pdf
19. LlewellynG.GethingL.KendigH.CantR. (2004). Older parent caregivers' engagement with the service system. American Journal on Mental Retardation, 109(5), 279-296. Retrieved from http://www.aaiddjournals.org/doi/full/10.1352/ 0895-8017%282004%29109%3C379%3AOPCEWT%3E2.0.CO%3B2
20. May J., Ellis-Hill C., Payne S. Gatekeeping and legitimization: How informal carers' relationship with health care workers is revealed in their everyday interactions. Journal of Advanced Nursing. 2001 ; 36 (3). 364-375 (Pubitemid 33612953)
21. Mears J. Paid care in Australia: Politics, profits, practices. King D. Meagher G., ed. Sydney, Australia: Sydney University Press ; 2009: 147-166.
22. New South Wales Department of Health. (2008). Disability-People with a disability: Responding to needs during hospitalisation. Retrieved from http://www.health.nsw.gov.au/policies/pd/2008/PD2008-010.html
23. Nolan M., Grant G., Keady J. Understanding family care. Buckingham, UK: Open University Press ; 1996 :
24. Occupational Health and Safety Act 1990, Sections 25 and 32. Government of Ontario Canada. (2009). Retrieved from http://www.search.e-laws.gov.on.ca/en/ isysquery/c9ec6aa3-bab9-455c-b873-cc70349f314c/2/doc/?search= browseStatutes&context=#hit1
25. Occupational Safety and Health Act of 1970, United States Department of Labor. (2004). Retrieved from http://www.dol.gov/compliance/topics/safety- health-osh.htm
26. Polkinghorne D. E. Narrative configuration in qualitative analysis. Qualitative Studies in Education. 1995 ; 8 (1). 5-23
27. Queensland Health. (2008). Patient safety: From learning to action II. Second Queensland health report on clinical incidents in the Queensland public health system 2006/7. Queensland, Australia: Queensland Government. Retrieved from http://www.health.qld.gov.au/psq/reports/lta2.pdf
28. Narrative analysis. Riessman C. K., ed. Newbury Park, CA: Sage ; 1993 :
29. Simpson R., Scotern G., Vincent M. Survey of carer satisfaction in the quality of care delivered to inpatients suffering from dementia. Journal of Advanced Nursing. 1995 ; 22 (3). 517-527
30. Usita P. M., Hall S. S., Davis J. C. Role ambiguity in family caregiving. Journal of Applied Gerontology. 2004 ; 23 (1). 20-39 (Pubitemid 38233304)
31. Wallace R., Beange H. On the need for a specialist service within the generic hospital setting for the adult patient with intellectual disability and physical health problems. Journal of Intellectual and Developmental Disability. 2008 ; 33 (4). 354-361
32. Ward-GriffinC.BolN.HayK.DashnayI. (2003). Relationship between families and registered nurses in long-term-care facilities: A critical analysis. CJNR: Canadian Journal of Nursing Research, 35(4), 150-174. Retrieved from http://cjnr.mcgill.ca/archive/35/abst35-4-ward.html (Pubitemid 38296257)
33. Workplace Health and Safety Act of 1995, Reprint 9D. Office of the Queensland Parliamentary Counsel, Queensland. (2010). Retrieved from http://www.legislation.qld.gov.au/LEGISLTN/CURRENT/W/WorkplHSaA95.pdf
34. Wuest J. Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International. 2001 ; 22: 167-193 (Pubitemid 33605095)
35. Wuest J., Hodgins M. J. Reflections on methodological approaches and conceptual contributions in a program of caregiving research: Development and testing of Wuest's Theory of Family Caregiving. Qualitative Health Research. 2011 ; 21: 151-161