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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 ,
Andrew Guilfoyle  and
Romola S. Bucks
Meredith Bolland
Affiliation:
School of Psychology, University of Western Australia, WA, Australia
Andrew Guilfoyle
Affiliation:
Centre for Psychological Research, Edith Cowan University, WA, Australia
Romola S. Bucks*
Affiliation:
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: romola.bucks@uwa.edu.au. Phone: +61 8 6488 3232, Fax: +61 8 6488 1006.
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Abstract

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.

Keywords

Parkinson’scare-giverpartnerhealth professionalqualitativeinterpretative phenomenological analysis
Type
Articles
Information
Brain Impairment , Volume 16 , Issue 2 , September 2015 , pp. 116 - 130
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2015 

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