Skip to main content
Article thumbnail
Location of Repository

Promoting employment in young-onset Parkinson's disease: a staged intervention approach

By Angela Birleson


This study investigated the employment experience of younger people with Parkinson’s Disease (PD). The aims of this study were formulated from reflections on clinical practice and observation of the often detrimental impact caused by relinquishing employment.\ud \ud A steering group consisting mainly of younger people with PD was established to guide the project. A sequential transformative research design was chosen and three methods of data collection were utilised in a flexible, multi-method approach: a questionnaire, which was distributed nationally and in electronic format via the Parkinson’s Disease Society website; a series of three focus groups; and an electronic proforma which recorded the employment stories of respondents via a newly created website. The meaning that employment had for younger people with PD, benefits of working, the decision making process regarding leaving work, difficulties encountered and successful strategies used by younger people with PD to maintain their employment were explored.\ud \ud This study unveiled a narrative surrounding the experience of employment of younger people with PD. The results indicated that this group required targeted assistance to enable them to maintain employment. The results were therefore transformed into a seven staged intervention to facilitate the maintenance of employment and to alter the current narrative. The staged intervention was developed to address the key issues highlighted by the study.\ud \ud Respondents identified a lack of available information and had a poor awareness of employment rights. There was a consensus regarding difficult symptoms to cope with in employment with fatigue having the biggest impact and other symptoms being: cognitive changes, stress, anxiety, reduced dexterity and mobility. Lack of flexibility by employers was noted to contribute to difficulty in work, and dealing with customers or speaking in public were the most problematic work roles. Respondents identified the benefits of work as: mental stimulation, a sense of identity, self esteem and financial benefits, and felt that giving up work would contribute to a social withdrawal.\ud \ud Respondents found that interaction with non-specialist professionals, in relation to the maintenance of work, was ineffective. The study recommends that this intervention should be delivered by a specialist occupational therapist with access to the skills of a multi-disciplinary team. The intervention was tested in practice and an evaluation model was presented to enable further development

Topics: B700
OAI identifier:

Suggested articles


  1. (2004). A comparative analysis of employment discrimination complaints filed by people with Multiple Sclerosis and individuals with other disabilities."
  2. (1991). A critique of the use of triangulation in social research."
  3. (2003). A Delphi Survey of Best Practice Occupational Therapy for Parkinson's Disease in the United Kingdom."
  4. (1969). A Ladder of Citizen Participation."
  5. (2000). A One Year Study of Coping, Social Support and Quality of Life in Parkinson's Disease."
  6. (2003). A review of the cognitive and behavioral sequelae of Parkinson's disease: relationship to frontostriatal circuitry."
  7. (2009). A study of perceived facilitators to physical activity in neurological conditions."
  8. (2003). A Survey of Current Occupational Therapy Practice for Parkinson's Disease in the United Kingdom."
  9. (2006). A systematic review of depression and mental illness preceign Parkinson's disease."
  10. (2002). A Theory of the Human Need for Occupation."
  11. (2005). Accessibility of health clubs for people with mobility disabilities and visual impairments."
  12. (2008). Adaptation - Participation and quality of life through successful adaptation to altered living conditions." Ergotherapie und Rehabilitation 47(8):
  13. (1983). Aetiology of Parkinson's disease."
  14. (2009). Allied health care in Parkinson's disease: referral, consultation, and professional expertise."
  15. (1995). An Introduction to Social Construction.
  16. (2005). Anxiety and Parkinson's Disease."
  17. (2000). Anxiety disorders and depressive disorders preceding Parkinson's disease: a case-control study."
  18. (2000). Anxiety disorders in Parkinson's disease."
  19. (2002). Apathy in Parkinson's disease."
  20. (2007). Associations Between Lifestyle and Depressed Mood: Longitudinal Results From the Maastricht Aging Study."
  21. (2007). B.L.(1996) “Handbook of Solution-focused brief therapy”. San Francisco, Jossey-Bass Publishers
  22. (2005). Barriers to exercise behavior among older adults: A focus-group study."
  23. (2002). Beyond the Iron Mask: Towards Better Recognition and Treatment of Depression Associated with Parkinson's Disease."
  24. (1990). Cabbage Syndrome The Social Construction of Dependence.
  25. (1998). Canadian Occupational Performance Measure. Ottowa,
  26. (1998). Carers Concerns. London, The Parkinson.
  27. (2007). Client’s using community occupational therapy services: sociodemographic factors and the occurrence of diseases and disabilities.”
  28. (2008). Clinical and psychological factors associated wtih fatigue in patients with Parkinson's disease."
  29. (1993). Clinical features and medical treatment of Parkinson's disease in patient groups selected in accordance with age at onset."
  30. (2008). Cognitive function assessment in idiopathic Parkinson's disease."
  31. (1973). Cognitive Sociology.
  32. (1999). Computer based approached to patient education: a review of the literature."
  33. (2000). Coping in Cyberspace: The Impact of Internet Use on the Ability of HIV-Positive Individuals to Deal with Their Illness."
  34. (1990). Coping, social support and depressive symptoms in Parkinson's disease."
  35. (2003). Counterfactual cognitive deficit in persons with Parkinson's disease."
  36. (2008). Counting the Cost,” EPDAPLUS Spring
  37. (2006). Department of Work and Pensions
  38. (1989). Depression and Cognitive Impairment in Parkinson's Disease."
  39. (1993). Depression. Parkinson's Disease Society of Greater Washington Magazine.
  40. (1995). Designing Qualitative Research.
  41. (2004). Disability Bill. London Department of Social Security
  42. (1997). Disturbances in higher function in Parkinson's disease."
  43. (2001). Does dialysis adequacy impact on the quality of life of end-stage renal disease patients?"
  44. (2001). Economic and Health-Related Quality of Life Considerations of New Therapies in Parkinson’s Disease.”
  45. (1994). Effect of age at onset on frequency of depression in Parkinson's disease."
  46. (1997). Effect of voice rehabilitation on oral communication of Parkinson's disease patients."
  47. (2009). Effect og behavioural intervention on comorbid general anxiety disorder and Parkinson's disease."
  48. (2009). Effectiveness of vocational rehabilitation intervention on the return to work and employment of persons with Multiple Sclerosis, Cochrane Institute of Systematic Reviews.
  49. (2008). Empowering employees with chronic diseases; development of an intervention aimed at job retention and design of a randomised controlled trial.”
  50. (2004). Empowerment, quality of life and participation in neurological rehabilitation. Empirical study with stroke patients and their relatives."
  51. (2002). Enabling Occupation:an occupational therapy perpective, Canadian Association of Occupational Therapists.
  52. (2002). Enduring economic exclusion: disabled people, income and work,
  53. (1999). Enhancing the Quality and Credibility of Qualitative Analysis”.
  54. (2006). Etiology of Parkinson's disease."
  55. (2000). Evidence-based cognitive rehabilitation: recommendations for clinical practice."
  56. (2002). Exercise and the Treatment of Clinical Depression in Adults: Recent Findings and Future Directions."
  57. (1999). Expert opinion on therapy for people with Parkinson's disease."
  58. (2007). Factors associated with health-related quality of life in chronic spinal cord injury."
  59. (2008). Fatigue in Parkinson's disease is not relates to excessive sleepiness or quality of sleep."
  60. (2001). Fatigue in Parkinson's Disease: a nine-year follow up."
  61. (1999). Female Forms: Experiencing and understanding disability.
  62. (2000). Framework for design and evaluation of complex interventions to improve health."
  63. (1992). Fronto-striatal cognitive deficits at different stages of Parkinson's disease."
  64. (2009). Functional and work outcomes improve in patients with rheumatiod arthritis who receive targeted, comprehensive occupational therapy."
  65. (2001). Getting Involved in Research: a Guide for Consumers. Winchester: Consumers in NHS Research Support Unit.
  66. Health (2000b). Research and Development for a First Class Service. London: Department of Health.
  67. Health (2001a). Making it work: inspection of welfare to work for disabled people. London: Department of Health.
  68. Health (2001b). The Expert Patient: A new approach to chronic disease management. London: Department of Health.
  69. Health (2005b). Research Governance Framework for Health and Social Care. London: Department of Health.
  70. (2000). Health Related Quality of Life in Parkinson's Disease: A Prospective Longitudinal Study."
  71. (1999). Health-Related Quality-of-Life Measurements in Patients with Parkinson's Disease."
  72. Health. (2000a) Working Partnerships. Consumers in Research Third Annual Report.
  73. (2006). How can we help employees with chronic illness to stay at work?" Int arch occup environ health 80:
  74. (2008). How do you treat motor complications in Parkinson's disease: Medicine, surgery, or both?"
  75. (1981). Human Enquiry: A Sourcebook of New Paradigm Research.
  76. (1992). Ideational fluency in Parkinson's disease."
  77. (1994). Impaired problem solving in Parkinson's disease: impact of a set-shifting deficit."
  78. (2003). Impairments in activities of daily living in Parkinson’s disease: Implications for management.”
  79. (2008). Improving Health and Work: Changing lives.
  80. (1999). Improving health: patient education resources on the internet."
  81. (2003). Improving Support for Younger People Locally Report on findings from younger people's events 2003. London, Parkinson's Disease Society.
  82. (1989). Interpretive Interactionism.
  83. (1999). Involving patients in clinical research”.
  84. (2006). Is physical exercise beneficial for persons with Parkinson's disease?"
  85. (2008). Is quality of life in non-demented Parkinson's Disease patients related to cognitive performance? A clinic-based cross-sectional study."
  86. (2006). Is work good for your health and wellbeing?
  87. (1999). Issues in caring for the patient with young-onset Parkinson's disease."
  88. (2004). lectromyographic profiles of gait prior to onset of freezing episodes in patients with Parkinson's disease."
  89. (2006). Life goals of patients with Parkinson's disease:a pilot study on correlations with mood and cognitive functions."
  90. (2006). Life with communication changes in Parkinson's disease."
  91. (2008). Life with Parkinson's today - room for improvement.
  92. (2001). Making it work: Inspection of Welfare to
  93. (2000). Maximising independence: Occupational Therapy intervention for patients with Parkinson's Disease. Parkinson's Disease and Quality
  94. (2002). Measuring the impact of Parkinson's disease: An occupational therapy perspective."
  95. (2004). Medical, psychological, social and pragmatic barriers to employment for people with Multiple Sclerosis."
  96. (1979). Mixing Qualitative and Quantitative Methods: Triangulation in Action."
  97. (2006). Mood and sleep in Parkinson's."
  98. (2002). Non-recognition of depression and other non-motor symptoms in Parkinson's disease."
  99. (2002). Nonmotor fluctuations in Parkinson's Disease: Frequesnt and disabling."
  100. (1999). Nonpharmacologic management strategies."
  101. (2008). Occupational Therapists
  102. (2001). Occupational Therapy for Parkinson's Disease." The cochrane library ID #CD002813.
  103. (2007). Occupational therapy for patients with Parkinson's disease. Oxford, Cochrane Database of Systematic Reviews.
  104. (2000). of Rehabilitation Medicine,
  105. (1976). On-off" effects in patients with Parkinson's disease on chronic levodopa therapy."
  106. (2006). Parkinson's disease and working capacity."
  107. (1995). Parkinson's disease as a problem of shame in public appearance."
  108. (2001). Parkinson's Disease in Practice.
  109. (2006). Parkinson's disease management strategies."
  110. (1982). Parkinson's Disease Patients and their Social Needs. London, Parkinson's Disease Society.
  111. (2000). Parkinson's disease therapy: Tailoring choices for early and late disease, young and old patients."
  112. (1986). Parkinson's disease: disability, review and management."
  113. (1999). Parkinson's disease."
  114. (1987). Pathophysiology and motor symptoms. Handbook of Parkinson's Disease.
  115. (1998). Patients experiences of Parkinson's disease."
  116. (1997). Perceived Control and Well-Being in Parkinson's Disease."
  117. (2002). Physical Activity Reduces the Risk of Subsequent Depression for Older Adults."
  118. (1998). Physical therapies. Part One: if you don't use it you lose it -physiotherapy. The Parkinson:
  119. (1998). Physical therapies. Part Three: practical solutions to daily problems - occupational therapy. The Parkinson:
  120. (1998). Physical therapies. Part Two: expressing yourself - speech and language therapy. The Parkinson:
  121. (2009). Pilot randomised controlled trial of occupational therapy to optimise independence in Parkinson's disease: the PD OT trial."
  122. (2008). Poor attentional function predicts cognitive decline in patients with non-demented Parkinson's disease independent of motor phenotype."
  123. (2004). Practitioners' impressions of patients with Parkinson's disease: The social ecology of the expressive mask."
  124. (2003). Pragmatic communication skills in patients with Parkinson's disease."
  125. (1999). Predictors of health care use in patients with Parkinson's disease: a longitudinal study."
  126. (2004). Predictors of physical activity stage of change among adults with physical disabilities."
  127. (2007). Prevalence and treatment of nonmotor symptoms in Parkinson's disease."
  128. (2005). Psychiatric aspects of Parkinson's disease."
  129. (1993). Psychological and social problems of Parkinson's disease."
  130. (1993). Psychosocial aspects of Parkinson's disease."
  131. (2008). Psychosocial issues in young-onset Parkinson's disease: Current research and challenges."
  132. (1990). Psychosocial problems of Parkinson patients: approaches to assessment to treatment.
  133. (1997). Qualitative Inquiry: A Dictionary of Terms.
  134. (2003). Qualitive Research Practice: A Guide for Social Science.
  135. (1995). Quality of life and care in Parkinson's disease."
  136. (1999). Quality of life and Parkinson's disease."
  137. (1997). Quality of Life for People with Disabilities.
  138. (2006). Quality of life in multiple sclerosis."
  139. (2002). Quality of life in young people with Parkinson's.
  140. (1997). Quality of life through personally meaningful activity. Quality of Life for People with Disabilities.
  141. (1992). Questionniare Design, Interviewing and Attitude Measurement.
  142. (2002). Real World Research.
  143. (2004). Rehabilitation for Parkinson's disease: A systematic review of available evidence."
  144. (2001). Rehabilitation for people with Parkinson's disease (letter)."
  145. (2008). Rehabilitation in Parkinson's Disease."
  146. (2001). Relationship between mood and motor fluctuations in Parkinson's Disease."
  147. (2003). Research Design.
  148. (1996). Research Methods for Therapists.
  149. (1997). Research Methods in Health.
  150. (1998). Research—What's in it for Consumers? Report of the Standing Advisory
  151. (1998). Researching society and culture.
  152. (1998). Review of motor control and motor learning: implications for occupational therapy with Parkinson’s disease.” Physical and Occupational Therapy in
  153. (1997). Self-Reported Health status and Access to Health Services in a Community Sample with Parkinson's Disease."
  154. (2003). Social Networks, Social Integration, and Social Engagement Determine Cognitive Decline in Community-Dwelling Spanish Older Adults."
  155. (2007). Social Security Disability Insurance (SSDI)
  156. (2003). Speech and language therapy versus placebo or no intervention for dysarthria in Parkinson's disease (Cochrane Review). Oxford, The Cochrane Library: Issue 3.
  157. (2003). Strategies of Qualitative Inquiry.
  158. (1993). Successful Focus Groups.
  159. (2008). Supporting People with Multiple Sclerosis in Employment: a United Kingdom Survey of Current Practice and Experience."
  160. (1999). Survey of Members of the Parkinson's Disease Society. London, Parkinson's Disease Society.
  161. (2008). The benefits and barriers to leisure occupations."
  162. (1999). The detection of dementia and cognitive impairment in a community population of elderly people with Parkinson's disease by use of the CAMCOG neuropsychological test."
  163. (2006). The Disability Discrimination Act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson's Disease."
  164. (1995). The freezing phenomenon in Parkinsonism."
  165. (1991). The impact of Parkinson's disease on families. Conference of People in the Caring Professions: Working with Families,
  166. (2006). The impact of Parkinson's disease on vocal-prosodic communication from the perspective of listeners."
  167. (2005). The influence of speech disturbances on quality of life and coping strategies of Parkinson's disease patients [German]." Forum Logopadie
  168. (1998). The Landscape of Qualitative Research.
  169. (1999). The needs of neurology patients after discharge."
  170. (2003). The relevance efficacy of speech therapy, occupational therapy and physiotherapy in Parkinson's disease."
  171. (1988). The relevance of the lewy boby to the pathogenesis of idiopathic Parkinson's disease."
  172. (2006). The Symptom Experience of Patients With Parkinson's Disease."
  173. (2001). The use of the internet by patients: not a threat to nursing, but an opportunity?"
  174. (2003). Therapies for Depression in Parkinson's Disease (Cochrane Review). Oxford, The Cochrane Library.
  175. (2003). Thriving and surviving at work: disabled people's employment strategies.
  176. (2006). Time of loss of employment in Parkinson's disease."
  177. (2009). Towards an understanding of fatigue in Parkinson’s disease."
  178. (2005). Treatment of depression and anxiety in Parkinson's Disease: A pilot study usung group cognitive behavioural therapy."
  179. (1996). Unemployment and health 1: the impact of unemployment on clients in therapy and rehabilitation."
  180. (2001). Updated guidelines for the managements of Parkinson's disease."
  181. (2003). Vocational Rehabilitation in Multiple Sclerosis: A profile of clients seeking services."
  182. (2007). Vocational rehabilitation services for people with Multiple Sclerosis: what patients want from clinicians and employers."
  183. (2003). Volunteering and depression: the role of psychological and social resources in different age groups."
  184. (2001). What contributes to depression in Parkinson's disease?"
  185. (1982). What to study: generating and developing research questions.
  186. (1988). Why Triangulate."
  187. (2008). Work and recreational changes among people with neurological illness and their caregivers.”
  188. (2007). Work is beneficial for Health and Wellbeing: Can Occupational Therapists Now Return to their Roots?"
  189. (2008). Working for a Healthier Tomorrow,
  190. (2004). Workplace Barriers and Job Satisfaction Among Employed People With Multiple Scerosis: An Empirical Rationale For Early Intervention."
  191. (1987). Young Onset Parkinson's disease."
  192. (2003). Young- versus older-onset Parkinson's disease: Impact of disease and psychosocial consequences."
  193. (1998). Young-onset Parkinson's disease revisited - clinical features, natural history and mortality."
  194. (2001). Younger Parkinson's Survey. London, Parkinson's Disease Society.

To submit an update or takedown request for this paper, please submit an Update/Correction/Removal Request.