Autonomy in relation to health among people with intellectual disability: A literature review

Journal of Intellectual Disability Research

Volumn 53, Issue 9, 2009, Pages 816-826

  Wullink, Magda ^a   Widdershoven, G ^b   Van Schrojenstein Lantman de Valk, H ^a   Metsemakers, J ^a   Dinant, G J ^a  

^a MAASTRICHT UNIVERSITY   (Netherlands)

^b VU UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Autonomy; Health; Independence; Intellectual disability; Review; Self realisation

Indexed keywords

AUTOREGULATION; HEALTH SERVICE; HUMAN; INDEPENDENCE; INDIVIDUALIZATION; INTELLECTUAL IMPAIRMENT; MEDICAL STAFF; MEDLINE; PATIENT AUTONOMY; PATIENT CARE; PSYCINFO; RESPONSIBILITY; REVIEW; SELF CARE;

HEALTH STATUS; HUMANS; MENTAL RETARDATION; PERSONAL AUTONOMY;

EID: 69149093290     PISSN: 09642633     EISSN: 13652788     Source Type: Journal    
DOI: 10.1111/j.1365-2788.2009.01196.x     Document Type: Review

References (60)

1. Abma T., Nierse C., Caron-Flinterman F., Broerse J., Heuvelman C., Dijk J. et al. (2006) Onderzoek Met En Voor Mensen Met Een Verstandelijke Beperkingen [research With And For People With Intellectual Disabilities]. Maastricht University, Maastricht.
2. Ager A., Myers F., Kerr P., Myles S. & Green A. (2001) Moving home: social integration for adults with intellectual disabilities resettling into community provision. Journal of Applied Research in Intellectual Disabilities 14, 392-400.
3. Algozzine B., Browder D., Karvonen M., Test D. W. & Wood W. M. (2001) Effects of interventions to promote self-determination for individuals with disabilities. Review of Educational Research 71, 219-77.
4. Antaki C., Finlay W., Walton C. & Pate L. (2008) Offering choices to people with intellectual disabilities: An interactional study. Journal of Intellectual Disability Research 52, 1165-75.
5. Arvidsson P., Granlund M. & Thyberg M. (2008) Factors related to self-rated participation in adolescents and adults with mild intellectualdisability - a systematic literature review. Journal of Applied Research in Intellectual Disabilities 21, 277-91.
6. Ashbaugh J. W. (2002) Down the garden path of self-determination. Mental Retardation 40, 416-17.
7. Beadle-Brown J., Murphy G., Wing L., Gould J., Shah A. & Holmes N. (2000) Changes in skills for people with intellectual disability: A follow-up of the Camberwell cohort. Journal of Intellectual Disability Research 44, 12-24.
8. Beckwith R. M. (2004) Will the real elephant please stand up? Mental Retardation 42, 67-9.
9. Bigby C. (1997) Later life for adults with intellectual disability: A time of opportunity and vulnerability. Journal of Intellectual & Developmental Disability 22, 97-107.
10. Carlson G. & Wilson J. (1996) Menstrual management and women who have intellectual disabilities: Service providers and decisionmaking. Journal of Intellectual and Developmental Disability 21, 39-57.
11. Crichton J. (1998) Case report: Balancing restriction and freedom in the care of people with intellectual disability. Journal of Intellectual Disability Research 42, 189-95.
12. Department of Health (2001) Valuing People; a New Strategy for Learning Disability for the 21st Century. HMSO, London.
13. DeSimone E. A. & Cascella P. W. (2005) Communication quality indicators: A survey of Connecticut group home managers. Journal of Developmental and Physical Disabilities 17, 1-17.
14. Dye L., Hare D. J. & Hendy S. (2007) Capacity of people with intellectual disabilities to consent to take part in a research study. Journal of Applied Research in Intellectual Disabilities 20, 168-74.
15. Emanuel E. J. & Emanuel L. L. (1992) Four models of the physician-patient relationship. Journal of the American Medical Association 267, 2221-6.
16. Faw G. D., Davis P. K. & Peck C. (1996) Increasing self-determination: Teaching people with mental retardation to evaluate residential options. Journal of Applied Behavior Analyses 29, 173-88.
17. Forbat L. (2006) An analysis of key principles in Valuing People. Implications for supporting people with dementia. Journal of Intellectual Disabilities 10, 249-60.
18. Gabre P. (2000) Studies in oral health in mentally retarded adults. Swedish Dental Journal-Supplement 142, 1-48.
19. Gabre P., Martinsson T. & Gahnberg L. (2002) Move of adults with ID from institutions to community-based living: Changes of food arrangements and oral health. Swedish Dental Journal 26, 81-8.
20. Goodley D. (2005) Empowerment, self-advocacy and resilience. Journal of Intellectual Disabilities 9, 333-43.
21. Griffin J., Carlson G., Taylor M. & Wilson J. (1994) Menstrual management and intellectual disability: New perspectives. Occupational Therapy International 1, 141-57.
22. Haelewyck M., Bara M. & Lachapelle Y. (2005) Facilitating self-determination in adolescents with intellectual disabilities. Evaluation Review 29, 490-502.
23. Hammel J. (2003) Technology and the environment: Supportive resource or barrier for people with developmental disabilities? Nursing Clinics of North America 38, 331-49.
24. Hoogland J. (2005) Tussen wens en drang. Hoe verhoudt zich de autonomie van de cliënt tot de professionele autonomie van de hulpverlener [Between preference and pressure. Relationship between the autonomy of clients and the professional autonomy of care providers]. Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperkingen 31, 184-202.
25. van Hooren R. H., Widdershoven G. A. M., van den Borne H. W. & Curfs L. M. G. (2002) Autonomy and intellectual disability: The case of prevention of obesity in Prader-Willi syndrome. Journal of Intellectual Disability Research 46, 560-8.
26. Horton R. (ed.) (2007) Learning disability: A neglected concern. The Lancet 369, 966.
27. Hoyle D. (1992) The autonomy of adult women should be paramount, not the exam. The Journal of Clinical Ethics 3, 76-7.
28. Iacono T. & Davis R. (2003) The experiences of people with developmental disability in Emergency Departments and hospital wards. Research in Developmental Disabilities 24, 247-64.
29. Kebbon L. (1997) Nordic contributions to disability policies. Journal of Intellectual Disability Research 41, 120-5.
30. Lennox N., Taylor M., Rey-Conde T., Bain C., Boyle F. M. & Purdie D. M. (2004) Ask for it: Development of a health advocacy intervention for adults with intellectual disability and their general practitioners. Health Promotion International 19, 167-75.
31. Martorell A., Gutierrez-Recacha P., Pereda A. & Ayuso-Mateos J. L. (2008) Identification of personal factors that determine work outcome for adults with intellectual disability. Journal of Intellectual Disability Research 52, 1091-101.
32. McConkey R., Walsh-Gallagher D. & Sinclair M. (2005) Social inclusion of people with intellectual disabilities; the impact of place of residence. Irish Journal of Psychological Medicine 22, 10-14.
33. McGillicuddy N. B. (2006) A review of substance use research among those with mental retardation. Mental Retardation and Developmental Disabilities Research Reviews 12, 41-7.
34. McNally S. (1996) Self-advocacy skills workshop: A report. British Journal of Nursing 5, 99-103.
35. Miller S. M. & Chan F. (2008) Predictors of life satisfaction in individuals with intellectual disability. Journal of Intellectual Disability Research 52, 1039-47.
36. Minihan P. M. (1999) Smoking policies and practices in a state-supported residential system for people with mental retardation. American Journal on Mental Retardation 104, 131-42.
37. Monfils M. J. (1985) Theme-centered group work with the mentally retarded. Social Casework Journal of Contemporary Social Work 66, 177-84.
38. Nirje B. (1969) The normalization principle and its human management implications. In: Changing Patterns in Residential Services for the Mentally Retarded (eds R. Kugl & W. Wolfensberger), pp. 181-95. President's Committee on Mental Retardation, Washington, DC.
39. Peter D. (1999) The client role: A help or a hindrance? Disability & Society 14, 805-18.
40. Prater C. D. & Zylstra R. G. (2006) Medical care of adults with mental retardation. American Family Physician 73, 2175-83.
41. Proot I. (2001) Changing autonomy. New perspectives on the care for stroke patients in nursing homes. PhD thesis Universitaire Pers Maastricht, The Netherlands.
42. Ramcharan P. (2005) Special issue on empowerment and advocacy. Journal of Intellectual Disabilities 9, 283-7.
43. Reiss S. (2000) A mindful approach to mental retardation. Journal of Social Issues 56, 65-80.
44. Robertson J., Emerson E., Hatton C., Gregory N., Kessissoglou S., Hallam A. etal. (2001) Environmental opportunities and supports for exercising self-determination in community-based residential settings. Research in Developmental Disabilities 22, 487-502.
45. Romer L. T., Richardson M., Aigbe E. & Porter A. (2003) Down the garden path of self-determination: A response to Ashbaugh. Mental Retardation 41, 290-8.
46. Rustin T. A. (1998) Incorporating nicotine dependence into addiction treatment. Journal of Addictive Diseases 17, 83-108.
47. Sands D. J., Kozleski E. B. & Goodwin L. D. (1991) Whose needs are we meeting? Results of a consumer satisfaction survey of persons with developmental disabilities in Colorado. Research in Developmental Disabilities 12, 297-314.
48. Saunders R. R. & Spradlin J. E. (1991) A supported routines approach to active treatment for enhancing independence, competence and self-worth. Behavioral Residential Treatment 6, 11-37.
49. Schwartz C. (1995) Assessing levels of personal autonomy among Israeli adults with intellectual disabilities living in group homes and apartment settings. Australia & New Zealand Journal of Developmental Disabilities 20, 41-50.
50. Smith P. (2003) Self-determination and independent support brokerage: creating innovative second-level supports. Mental Retardation 41, 290-8.
51. Stancliffe R. J. (2001) Living with support in the community: Predictors of choice and self-determination. Mental Retardation and Developmental Disabilities Research Reviews 7, 91-8.
52. Taylor N. S., Standen P. J., Cutajar P., Fox D. & Wilson D. N. (2004) Smoking prevalence and knowledge of associated risks in adult attenders at day centres for people with learning disabilities. Journal of Intellectual Disability Research 48, 239-44.
53. Tracy J. & Hosken R. (1997) The importance of smoking education and preventative health strategies for people with intellectual disability. Journal of Intellectual Disability Research 41, 416-21.
54. Wehmeyer M. L. & Metzler C. A. (1995) How self-determined are people with mental retardation? The national consumer survey. Mental Retardation 33, 111-19.
55. Wehmeyer M. L., Kelchner K. & Richards S. (1996) Essential characteristics of self-determined behavior of individuals with mental retardation. American Journal on Mental Retardation 100, 632-42.
56. Wehmeyer M., Bersani H. & Gagne R. (2000) Riding the third wave: self-determination and self-advocacy in the 21st century. Focus on Autism and other Developmental Disabilities 15, 106-15.
57. Widdershoven G. A. M. & Berghmans R. L. P. (2004) Wilsbekwaamheid in de zorg voor mensen met een verstandelijke beperking. Een alternatief kader. [Ability to give informed consent in care for people with intellectual disability. An alternative scope]. Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperkingen 30, 166-80.
58. Wiltz J. (2007) Self-determined roommate selection for individuals with intellectual disabilities: Barriers and new directions. Journal of Policy and Practice in Intellectual Disabilities 4, 60-5.
59. Wolfensberger W. & Glen L. (1975) Program Analysis of Service Systems 3: A Method for the Quantitative Evaluation of Human Services. NIMR, Toronto.
60. Wong P. K. S. & Wong D. F. K. (2008) Enhancing staff attitudes, knowledge and skills in supporting the self-determination of adults with intellectual disability in residential settings in Hong Kong: A pre-test -post-test comparison group design. Journal of Intellectual Disability Research 52, 230-43.