Impact on participation and autonomy: test of validity and reliability for older persons
In research and healthcare it is important to measure older persons’ self-determination in order to improve their possibilities to decide for themselves in daily life. The questionnaire Impact on Participation and Autonomy (IPA) assesses self-determination, but is not con structed for older persons. The aim of this study was to examine the validity and reliabil ity of the IPA-S questionnaire for persons aged 70 years and older. The study was performed in two steps; first a validity test of the Swedish version of the questionnaire, IPA-S, followed by a reliability test-retest of an adjusted ver sion. The validity was tested with focus groups and individual interviews on persons aged 77 88 years, and the reliability on persons aged 70-99 years. The validity test result showed that IPA-S is valid for older persons but it was too extensive and the phrasing of the items needed adjustments. The reliability test-retest on the adjusted questionnaire, IPA- Older per sons (IPA-O), showed that 15 of 22 items had high agreement. IPA-O can be used to measure older persons’ self-determination in their care and rehabilitation.
1. United Nations. Charter of the United Nations. 2013. Available from: http://www.un.org/en/documents/charter/.
2. EUSTaCEA-project. European Charter of the Rights and Responsibilities of Older People in Need of Longterm Care and Assistance. Available from: http://www.age-platform.eu/images/stories/22204_AGE_charte_europeenne_EN_v4.pdf
3. Kristensson J, Hallberg IR, Ekwall AK. Frail older adult’s experiences of receiving health care and social services. J Gerontol Nurs 2010;36:20-8.
4. Flick U, Fischer C, Neuber A, et al. Health in the context of growing old: social representations of health. J Health Psychol 2003;8:539-56.
5. Levasseur M, St-Cyr Tribble D, Desrosiers J. Meaning of quality of life for older adults: importance of human functioning components. Arch Gerontol Geriatr 2009;49:91-100.
6. Janlöv AC, Hallberg IR, Petersson K. Older persons’ experience of being assessed for and receiving public home help: do they have any influence over it? Health Soc Care Community 2006;14:26-36.
7. Ekdahl A, Andersson L, Wirehn AB, Friedrichsen M. Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised? A cross-sectional survey. BMC Geriatr 2011;11:46-54.
8. Boyle G. Facilitating choice and control for older people in long-term care. Health Soc Care Community 2004;12:212-20.
9. Teeri S, Leino-Kilpi H, Valimaki M. Long-term nursing care of elderly people: identifying ethically problematic experiences among patients, relatives and nurses in Finland. Nursing Ethics 2006;13:116-29.
10. English V. Medical ethics today: the BMS’s handbook of ethics and law. Oxford, Blackwell Publishing BMJ Books; 2004.
11. Elander G, Hermeren G. Autonomy and paternalistic behaviour in care. Scand J Caring Sci 1989;3:153-9.
12. Collopy BJ. Autonomy in long term care: some crucial distinctions. Gerontologist 1988;28:10-7.
13. Cardol M, De Jong BA, Ward CD. On autonomy and participation in rehabilitation. Disabil Rehabil 2002;24:970-4.
14. Cardol M, de Haan RJ, van den Bos GA, et al. The development of a handicap assessment questionnaire: the impact on participation and autonomy (IPA). Clin Rehabil 1999;13:411-9.
15. Cardol M, de Haan RJ, de Jong BA, et al. Psychometric properties of the impact on participation and autonomy questionnaire. Arch Phys Med Rehabil 2001;82:210-6.
16. Cardol M, Beelen A, van den Bos GA, et al. Responsiveness of the Impact on Participation and Autonomy questionnaire. Arch Phys Med Rehabil 2002;83:1524-9.
17. Lund ML, Fisher AG, Lexell J, Bernspång B. Impact on participation and autonomy questionnaire: internal scale validity of the Swedish version for use in people with spinal cord injury. J Rehabil Med 2007;39:156-62.
18. Patton MQ. Enhancing the quality and credibility of qualitative analysis. Health Serv Res 1999;34:1189-208.
19. Svensson E. Ordinal invariant measures for individual and group changes in ordered categorical data. Stat Med 1998;17:2923-36.
20. Svensson E, Schillberg B, Kling AM, Nystrom B. Reliability of the balanced inventory for spinal disorders, a questionnaire for evaluation of outcomes in patients with various spinal disorders. J Spinal Disord Tech 2012;25:196-204.
21. Sonn U, Grimby G, Svanborg A. Activities of daily living studied longitudinally between 70 and 76 years of age. Disabil Rehabil 1996;18:91-100.
22. Wilhelmson K, Duner A, Eklund K, et al. Continuum of care for frail elderly people: Design of a randomized controlled study of a multi-professional and multidimensional intervention targeting frail elderly people. BMC Geriatr 2011;11:24.
23. Krueger RA, Casey MA. Focus groups: a practical guide for applied research. Thousand Oaks: Sage Publications; 2000.
24. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurs Educ Today 2004;24:105-12.
25. Svensson E. Guidelines to statistical evaluation of data from rating scales and questionnaires. J Rehabil Med 2001;33:47-8.
26. WMA. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 2013;310:2191-4.
27. Switzer GE, Wisniewski SR, Belle SH, et al. Selecting, developing, and evaluating research instruments. Soc Psychiatry Psychiatr Epidemiol 1999;34:399-409.
28. Altman DG. Practical statistics for medical research. London: Chapman and Hall; 1991.
29. Bunketorp L, Carlsson J, Kowalski J, Stener-Victorin E. Evaluating the reliability of multi-item scales: a non-parametric approach to the ordered categorical structure of data collected with the Swedish version of the Tampa scale for kinesiophobia and the self-efficacy Scale. J Rehabil Med 2005;37:330-4.
30. Nunnally JC, Bernstein IH. Psychometric theory. New York: McGraw-Hill; 1994.