“You plan, but you never know” – participation among people with different levels of severity of Parkinson’s disease

References

• World Health Organization. International classification of functioning, disability and health: ICF. Geneva: World Health Organization; 2001
   Google Scholar
• Edwards D, Christiansen C. Occupational development. In: Christiansen C, Baum C, eds. Occupational therapy: performance, participation and well-being. New Jersey: Slack; 2005:42--63
   Google Scholar
• Hammel J, Magasi S, Heinemann A, et al. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 2008;30:1445–60
   PubMed Web of Science ®Google Scholar
• Perenboom RJ, Chorus AM. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2003;25:577–87
   PubMed Web of Science ®Google Scholar
• Heinemann AW. Measurement of participation in rehabilitation research. Arch Phys Med Rehabil 2010;91:S1–4
   PubMed Web of Science ®Google Scholar
• Dijkers MP. Issues in the conceptualization and measurement of participation: an overview. Arch Phys Med Rehabil 2010;91:S5–16
   PubMed Web of Science ®Google Scholar
• Eyssen IC, Steultjens MP, Dekker J, et al. A systematic review of instruments assessing participation: challenges in defining participation. Arch Phys Med Rehabil 2011;92:983–97
   PubMed Web of Science ®Google Scholar
• Organization WH, Bank TW. World report on disability. Geneva: WHO; 2011
   Google Scholar
• Alves G, Forsaa E, Pedersen K, et al. Epidemiology of Parkinson’s disease. J Neurol 2008;255:18–32
   PubMed Web of Science ®Google Scholar
• Chaudhuri KR, Odin P, Antonini A, et al. Parkinson’s disease: the non-motor issues. Parkinsonism Relat Disord 2011;17:717–23
   PubMed Web of Science ®Google Scholar
• Hariz GM, Forsgren L. Activities of daily living and quality of life in persons with newly diagnosed Parkinson’s disease according to subtype of disease, and in comparison to healthy controls. Acta Neurol Scand 2011;123:20–7
   PubMed Web of Science ®Google Scholar
• Kielhofner G. Model of human occupation: theory and application. 4th ed. Baltimore (MD): Lippincott Williams & Wilkins; 2008
   Google Scholar
• Wilcock A. An occupational perspective of health. 2nd ed. Thorofare (NJ): SLACK; 2006
   Google Scholar
• Duncan RP, Earhart GM. Measuring participation in individuals with Parkinson disease: relationships with disease severity, quality of life, and mobility. Disabil Rehabil 2011;33:1440–6
   PubMed Web of Science ®Google Scholar
• Foster ER, Golden L, Duncan RP, et al. Community-based Argentine tango dance program is associated with increased activity participation among individuals with Parkinson’s disease. Arch Phys Med Rehabil 2013;94:240–9
   PubMed Web of Science ®Google Scholar
• Benharoch J, Wiseman T. Participation in occupations: some experiences of people with Parkinson’s disease. Brit J Occup Therapy 2004;67:380–7
   Google Scholar
• Caap-Ahlgren M, Lannerheim L. Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. J Adv Nurs 2002;39:87–95
   PubMed Web of Science ®Google Scholar
• Sjodahl Hammarlund C, Nilsson MH, Hagell P. Measuring outcomes in Parkinson’s disease: a multi-perspective concept mapping study. Qual Life Res 2012;21:453–3
   PubMed Web of Science ®Google Scholar
• Merton RK. The focused interview: a manual of problems and procedures. Glencoe (IL): Free Press; 1956
   Google Scholar
• Krueger R, Casey M. Focus groups: a practical guide for applied research. 4th ed. Los Angeles: SAGE; 2009
   Google Scholar
• Dahlin-Ivanoff S, Iwarsson S, Sonn U. Occupational therapy research on assistive technology and physical environmental issues: a literature review. Can J Occup Ther 2006;73:109–19
   PubMedGoogle Scholar
• Kitzinger J. Qualitative research – introducing focus groups. Brit Medl J 1995;311:299–302
   PubMed Web of Science ®Google Scholar
• Dahlin-Ivanoff S, Hultberg J. Understanding the multiple realities of everyday life: basic assumptions in focus-group methodology. Scand J Occup Ther 2006;13:125–32
   PubMedGoogle Scholar
• Patton MQ. Qualitative research & evaluation methods. 3rd ed. Thousand Oaks: Sage Publications Inc; 2002
   Google Scholar
• Hulter Åsberg K. ADL-trappan. Lund: Studentlitteratur; 1990
   Google Scholar
• Freeman T. ‘Best practice’ in focus group research: making sense of different views. J Adv Nurs 2006;56:491–7
   PubMed Web of Science ®Google Scholar
• Behm L, Ziden L, Duner A, et al. Multi-professional and multi-dimensional group education – a key to action in elderly persons. Disabil Rehabil 2013;35:427–35
   PubMed Web of Science ®Google Scholar
• Kitzinger J. The methodology of focus groups – the importance of interaction between research participants. Sociol Health Illness 1994;16:103–21
   Web of Science ®Google Scholar
• Litosseliti L. Using focus groups in research. London: Continuum; 2003
   Google Scholar
• Morgan DL, Krueger RA, King JA. Focus group kit. Thousand Oaks (CA): SAGE Publications; 1998
   Google Scholar
• Nijhof G. Parkinson’s disease as a problem of shame in public appearance. Sociol Health Illness 1995;17:193–205
   Web of Science ®Google Scholar
• Stack EL, Roberts HC. Slow down and concentrate: time for a paradigm shift in fall prevention among people with Parkinson’s disease? Parkinsons Dis 2013;704237(1--9)
   Google Scholar
• Bramley N, Eatough V. The experience of living with Parkinson’s disease: an interpretative phenomenological analysis case study. Psychol Health 2005;20:223–35
   Web of Science ®Google Scholar
• Davis J, Ehrhart A, Trzcinski B, et al. Variability of experiences for individuals living with Parkinson disease. Neurol Rep 2003;27:38–45
   Google Scholar
• Van Der Bruggen H, Widdershoven G. Being a Parkinson’s patient: immobile and unpredictably whimsical literature and existential analysis. Med Health Care Philos 2004;7:289–301
   PubMedGoogle Scholar
• Michalowska M, Fiszer U, Krygowska-Wajs A, et al. Falls in Parkinson’s disease: causes and impact on patients’ quality of life. Funct Neurol 2005;20:163–8
   PubMed Web of Science ®Google Scholar
• Moore O, Peretz C, Giladi N. Freezing of gait affects quality of life of peoples with Parkinson’s disease beyond its relationships with mobility and gait. Mov Disord 2007;22:2192–5
   PubMed Web of Science ®Google Scholar
• Whitney CM. Maintaining the square. How older adults with Parkinson’s disease sustain quality in their lives. J Gerontol Nurs 2004;30:28–35
   PubMedGoogle Scholar
• Wressle E, Engstrand C, Granerus AK. Living with Parkinson’s disease: elderly patients’ and relatives’ perspective on daily living. Austr Occup Therapy J 2007;54:131–9
   Web of Science ®Google Scholar
• Mars GM, Kempen GI, Mesters I, et al. Characteristics of social participation as defined by older adults with a chronic physical illness. Disabil Rehabil 2008;30:1298–308
   PubMed Web of Science ®Google Scholar
• Borell L, Asaba E, Rosenberg L, et al. Exploring experiences of “participation” among individuals living with chronic pain. Scand J Occup Ther 2006;13:76–85
   PubMedGoogle Scholar
• Foster ER, Hershey T. Everyday Executive function is associated with activity participation in Parkinson disease without dementia. OTJR (Thorofare N J) 2011;31:16–22
   PubMed Web of Science ®Google Scholar
• Eccles FJ, Murray C, Simpson J. Perceptions of cause and control in people with Parkinson’s disease. Disabil Rehabil 2011;33:1409–20
   PubMed Web of Science ®Google Scholar
• Perenboom RJ, Wijlhuizen GJ, Garre FG, et al. An empirical exploration of the relations between the health components of the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil 2012;34:1556–61
   PubMed Web of Science ®Google Scholar
• Eyssen IC, Steultjens MP, de Groot V, et al. A cluster randomised controlled trial on the efficacy of client-centred occupational therapy in multiple sclerosis: good process, poor outcome. Disabil Rehabil 2013;35:1636–46
   PubMed Web of Science ®Google Scholar
• Cott CA. Client-centred rehabilitation: client perspectives. Disabil Rehabil 2004;26:1411–22
   PubMed Web of Science ®Google Scholar
• Bright FA, Boland P, Rutherford SJ, et al. Implementing a client-centred approach in rehabilitation: an autoethnography. Disabil Rehabil 2012;34:997–1004
   PubMed Web of Science ®Google Scholar
• van der Eijk M, Faber MJ, Al Shamma S, et al. Moving towards patient-centered healthcare for patients with Parkinson’s disease. Parkinsonism Relat Disord 2011;17:360–4
   PubMed Web of Science ®Google Scholar
• Law M, Baptiste S, Mills J. Client-centred practice: what does it mean and does it make a difference? Can J Occup Ther 1995;62:250–7
   PubMedGoogle Scholar
• Behm L, Ivanoff SD, Ziden L. Preventive home visits and health experiences among very old people. BMC Public Health 2013;13:378
   PubMed Web of Science ®Google Scholar
• Lamb SE, Jorstad-Stein EC, Hauer K, et al. Development of a common outcome data set for fall injury prevention trials: the Prevention of Falls Network Europe consensus. J Am Geriatr Soc 2005;53:1618--22
   Google Scholar