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I’m Losing the ‘Me’: Partners’ Experiences of Engagement with Parkinson's Health Professionals

Published online by Cambridge University Press:  22 September 2015

Meredith Bolland
School of Psychology, University of Western Australia, WA, Australia
Andrew Guilfoyle
Centre for Psychological Research, Edith Cowan University, WA, Australia
Romola S. Bucks*
School of Psychology, University of Western Australia, WA, Australia
*Address for correspondence: Professor Romola Bucks, School of Psychology, The University of Western Australia (M304), 35 Stirling Highway, Crawley WA 6009, Australia. E-mail: Phone: +61 8 6488 3232, Fax: +61 8 6488 1006.


Background: Partners of people with Parkinson's disease (PD) have first-hand knowledge relevant to the management of the person with Parkinson's (PwP). If captured, this knowledge may improve effective care for the PwP. However, there is a lack of research focusing primarily on partners’ experiences of engagement with health professionals working in PD (HPPs).

Methods: Interpretative Phenomenological Analysis (IPA) was used to investigate the meaning of partners’ experiences of engagement with HPPs. Semi-structured interviews with 15 partners of PwP provided primary data. Each interview was digitally recorded, transcribed verbatim and analysed for emerging themes.

Results: Three themes emerged: (i) partners’ lack of entitlement for their own needs to be met; (ii) submersion of self in the partnership and (iii) health professionals as agents of support. Additionally, sub-themes were identified, such as barriers to feeling entitled, setting up a premise for entitlement, and lost identity. Together, these themes highlight the current lack of focus on the partners of PwP. A process model was developed to describe partners’ cyclic progression through the various stages of their experience, and in the process, identifying initiatives for intervention.

Conclusion: Given a lack of focus on the needs of partners of PwP, these preliminary insights could inform the delivery of improved services that support partners. This will ultimately benefit the PwP.

Copyright © Australasian Society for the Study of Brain Impairment 2015 

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