End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

Journal of Applied Research in Intellectual Disabilities

Volumn 25, Issue 6, 2012, Pages 571-583

  Wiese, Michele ^a   Stancliffe, Roger J ^a   Balandin, Susan ^a   Howarth, Glennys ^b   Dew, Angela ^a  

^a UNIVERSITY OF SYDNEY   (Australia)

^b UNIVERSITY OF PLYMOUTH   (United Kingdom)

Author keywords

Ageing; Community living; Dying; End of life care; Intellectual disability; Staff

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO DEATH; AUSTRALIA; BIOETHICS; CAREGIVER; ETHICS; FEMALE; HEALTH PERSONNEL ATTITUDE; HUMAN; HUMAN RELATION; INTELLECTUAL IMPAIRMENT; MALE; MEDICAL ETHICS; METHODOLOGY; PROFESSIONAL PRACTICE; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; RESEARCH; STANDARD; TERMINAL CARE;

ADULT; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO DEATH; AUSTRALIA; BIOETHICAL ISSUES; CAREGIVERS; ETHICS, MEDICAL; FEMALE; HUMANS; INTELLECTUAL DISABILITY; MALE; PROFESSIONAL PRACTICE; PROFESSIONAL-FAMILY RELATIONS; PROFESSIONAL-PATIENT RELATIONS; QUALITATIVE RESEARCH; RESEARCH REPORT; TERMINAL CARE;

EID: 84867437884     PISSN: 13602322     EISSN: 14683148     Source Type: Journal    
DOI: 10.1111/jar.12000     Document Type: Article

References (63)

1. Bigby C. (1995) Is there a hidden group of older people with intellectual disability and from whom are they hidden? Lessons from a recent case-finding study. Australia and New Zealand Journal of Developmental Disabilities 20, 15-24.
2. Bigby C. (2004) Ageing with a Lifelong Disability: A Guide to Practice, Program and Policy Issues for Human Service Professionals. Jessica Kingsley Publishers, London.
3. Blackman N. & Todd S. (2005) Caring for People with Learning Disabilities Who Are Dying. Worth Publishing, London.
4. Bogenschutz M., Hewitt A., Hall-Lande J. & LaLiberte T. (2010) Status and trends in the direct support workforce in self-directed supports. Intellectual and Developmental Disabilities 48, 345-360.
5. Botsford A. L. (2004) Status of end of life care in organizations providing services for older people with a developmental disability. American Journal on Mental Retardation 109, 421-428.
6. Braddock D., Emerson E., Felce D. & Stancliffe R. J. (2001) Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, England and Wales, and Australia. Mental Retardation and Developmental Disabilities 7, 115-121.
7. Brown H. & Flynn M. (2008) Supporting people with intellectual disabilities who are dying: what care staff need to know (Abstract). Journal of Intellectual Disability Research 52, 653.
8. Brown H., Flynn M. & Burns S. (2003) An ordinary death? The service needs of people with learning disabilities who are dying. The Foundation for People with Learning Disabilities - Updates 4, 1-4.
9. Bryant A. & Charmaz K. (2007) Grounded theory research: Methods and practices (Chapter 1). In: The SAGE Handbook of Grounded Theory, (eds A. Bryant & K. Charmaz), pp. 1-28. Sage Publications, Thousand Oaks, CA.
10. Charmaz K. (2006) Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications, London.
11. Coroners Act NSW (2009). Available at: http://www.legislation.nsw.gov.au/fullhtml/inforce/act+41+2009+fn+0+N? (accessed on 29 February 2012).
12. Dusart A. (2008) Perceptions of death among adults with intellectual disability and awareness of their own mortality. International Journal on Disability and Human Development 7, 433-439.
13. Dwyer I. I., Hansebo G., Andershed B. & Ternestedt B. M. (2010) Nursing home residents' views on dying and death: nursing home employee's perspective. International Journal of Older People Nursing 6, 251-260.
14. Edmunds H. (1999) The Focus Group Research Handbook. NTC Business Books, Chicago, IL.
15. Ellison C., White A. & Chapman L. (2011) Avoiding institutional outcomes for older adults living with a disability: the use of community-based aged care supports. Journal of Intellectual & Developmental Disability 36, 175-183.
16. Flynn M., Brown H. & Burns S. (2008, 26th August). Dying matters: Supporting people with ID who are dying: What care staff need to know. Paper presented at The 13th World Congress of the International Association for the Scientific Study of Intellectual Disability, Capetown, South Africa.
17. Flynn M., Salomons H. B., Salomons S. B. & Keywood K. (2009) The palliative care experiences of adults with learning disabilities/intellectual disability: the implications for ethical decision making. International Journal on Disability and Human Development 8, 25-32.
18. Froggatt K. (2001) Life and death in English nursing homes: sequestration or transition?. Ageing and Society 21, 319-332.
19. Froggatt K., Hockley J., Parker D. & Brazil K. (2011) A system lifeworld perspective on dying in long term care settings for older people: contested states in contested places. Health & Place 17, 263-268.
20. Glaser B. G. & Strauss A. L. (1965) Awareness of Dying. Aldine, Chicago, IL.
21. Glaser B. G. & Strauss A. L. (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine, New York.
22. Hasson H. & Arnetz J. E. (2011) Care recipients' and family members' perceptions of quality of older people care: a comparison of home-based care and nursing homes. Journal of Clinical Nursing 20, 1423-1435.
23. Hood J. C. (2007). Orthodoxy vs. power: The defining traits of grounded theory (Chapter 1). In The SAGE Handbook of Grounded Theory, (eds A. Bryant & K. Charmaz), pp. 151-164. Sage Publications, Thousand Oaks, CA.
24. Hunter S. & Levett-Jones T. (2010) The practice of nurses working with older people in long term care: an Australian perspective. Journal of Clinical Nursing 19, 527-536.
25. Kidd P. S. & Parshall M. B. (2000) Getting the focus and the group: enhancing analytical rigor in focus group research. Qualitative Health Research 10, 293-308.
26. Kirsch N. R. (2009) The multidisciplinary team: end-of-life ethical decisions. Topics in Geriatric Rehabilitation 25, 292-306.
27. Krueger R. A. (2000) Planning the focus group study. In Focus Groups: A Practical Guide for Applied Research, (eds R. A. Krueger & M. A. Casey), pp. 20-37. Sage Publications, Thousand Oaks, CA.
28. Lambert S. D. & Loiselle C. G. (2008) Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing 62, 228-237.
29. McCarron M., McCallion P., Fahey-McCarthy E. & Connaire K. (2010) Staff perceptions and essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia. Journal of Policy and Practice in Intellectual Disabilities 7, 143-152.
30. McCarron M., McCallion P., Fahey-McCarthy E. & Connaire K. (2011) The role and timing of palliative care in supporting persons with intellectual disability and advanced dementia. Journal of Applied Research in Intellectual Disabilities 24, 189-198.
31. McEvoy J., MacHale R. & Tierney E. (2012) Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research 56, 191-203.
32. Mencap (2012) Death by Indifference: 74 Deaths and Counting. Mencap, London.
33. Michael J. (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. Aldrich Press, London.
34. Morgan D. L. (1998) The Focus Group Guidebook: Focus Group Kit 1. Sage Publications, Thousand Oaks, CA.
35. Morse J. M. (2007) Sampling in grounded theory. In The SAGE Handbook of Grounded Theory, (eds A. Bryant & K. Charmaz), pp. 229-244. Sage Publications, Thousand Oaks, CA.
36. Nirje B. (1969) The normalization principle and its human management implication. In Changing Patterns in Residential Services for the Mentally Retarded, (eds R. Kugel & W. Wolfensberger), pp. 227-254. Presidents Committee on Mental Retardation, Washington, DC.
37. ™ (2008) QSR International Pty Ltd.
38. ™ (2010) QSR International Pty Ltd.
39. Patja K., Iivanainen M., Vesala H., Oksanen H. & Ruoppila I. (2000) Life expectancy of people with intellectual disability: a 35-year follow-up study. Journal of Intellectual Disability Research 44, 591-599.
40. Patton M. Q. (2002) Qualitative Evaluation and Research Methods, 3rd edn. Sage Publications, London.
41. Phillips N. & Rose J. (2010) Predicting placement breakdown: individual and environmental factors associated with the success or failure of community residential placements for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 23, 201-213.
42. Productivity Commission (2011) Caring for Older Australians, Report No. 53. Australian Government, Canberra.
43. Read S. (2005) Loss, bereavement and learning disabilities: providing a continuum of support. Learning Disability Practice 8, 33-37.
44. Read S. & Elliott D. (2007) Exploring a continuum of support for bereaved people with intellectual disabilities. Journal of Intellectual Disabilities 11, 167-181.
45. Read S. & Morris H. (2008) Living and Dying with Dignity: The Best Practice Guide to End-of-life Care for People with a Learning Disability. Mencap, London.
46. Reynolds S., Guerin S., McEvoy J. & Dodd P. (2008) Evaluation of a bereavement training program for staff in an intellectual disabilities service. Journal of Policy and Practice in Intellectual Disabilities 5, 1-5.
47. Ryan K., McEvoy M., Guerin S. & Dodd P. (2010) An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. Palliative Medicine 24, 566-572.
48. Ryan K., Guerin S., Dodd P. & McEvoy J. (2011a) Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness. Palliative and Supportive Care 9, 201-208.
49. Ryan K., Guerin S., Dodd P. & McEvoy J. (2011b) End-of-life care for people with intellectual disabilities: paid carer perspectives. Journal of Applied Research in Intellectual Disabilities 24, 199-207.
50. Savage T. A., Ast K., Reva B., Castrogiovanni M. & Conway P. (2010) Supports and resources for adults. In End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities, (eds S. L. Friedman & D. T. Helm), pp. 313-328. American Association on Intellectual and Developmental Disabilities, Washington, DC.
51. Stancliffe R. J., Jones E., Mansell J. & Lowe K. (2008) Active support: a critical review and commentary. Journal of Intellectual & Developmental Disability 33, 196-214.
52. Strauss A. L. (1987) Qualitative Analysis for Social Scientists. Cambridge University Press, New York.
53. Todd S. (2004) Death counts: the challenge of death and dying in learning disability services. Learning Disability Practice 7, 12-15.
54. Tuffrey-Wijne I. (2009) The preferred place of care for people who are dying. Learning Disability Practice 12, 16-21.
55. Tuffrey-Wijne I. (2010) Living with Learning Disabilities, Dying with Cancer: Thirteen Personal Stories. Jessica Kingsley, London.
56. Tuffrey-Wijne I., Hogg J. & Curfs L. (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities 20, 331-344.
57. United Nations (2006) Convention on the Rights of Persons with Disabilities. Available at: http://www2.ohchr.org/english/law/disabilities-convention.htm (accessed on 18 August 2011).
58. Wadensten B., Conden E., Wahlund L. & Murray K. (2007) How nursing home staff deal with residents who talk about death. International Journal of Older People Nursing 2, 214-249.
59. Watchman K. (2005) Practitioner raised issues and end-of-life care for adults with Down syndrome and dementia. Journal of Policy and Practice in Intellectual Disabilities 2, 156-162.
60. Watters L., McKenzie K. & Wright R. (2011) The impact of staff training on the knowledge of support staff in relation to bereavement and people with an intellectual disability. British Journal of Learning Disabilities. doi: 10.1111/j.1468-3156.2011.00693.x
61. Wiese M. Y., Balandin S. & Stancliffe R. J. (2008) End-of-life care and dying: choices and needs of people with intellectual disability and their carers (Abstract). Journal of Intellectual Disability Research 52, 653.
62. Wiese M. Y., Stancliffe R. J. & Howarth G. (2010) End-of-life care: needs of community living staff who support people with intellectual disability (Abstract). Journal of Applied Research in Intellectual Disabilities 23, 414.
63. World Health Organization, The World Bank (2011) World Report on Disability. WHO Press, Geneva.