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

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. 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. 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. 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. 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