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

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.

‘I Think the Carer-Partner Dichotomy is Always Interesting’: Tensions in Health Professionals’ Engagement with Spousal Care givers of People with Parkinson's

“…The literature has revealed that care givers find it meaningful to be recognised, valued and respected in their engagement with health professionals (Birgersson & Edberg, 2004; Jenkinson et al, 2012; Lindahl et al, 2011; McLaughlin et al, 2011; Palmer, 2012). Unfortunately, the acknowledgement and admiration expressed by HPPs in the current study did not always align with the experience of spousal care givers in the literature, or in Bolland et al (2015). Consistent with what McLaughlin et al (2011) described, it was found in this study that some HPPs did not provide an opportunity for spousal care givers to discuss the progress of the PwP, as well as the changing roles, needs and entitlements of the spouse.…”

“…HPPs acknowledged a pervasive lack of entitlement described by Bolland et al (2015), and a sense of being alone and neglected expressed by partners (Aragon et al, 2007; Birgersson & Edberg, 2004; Bogart, 2010). The tension here occurred when HPPs discounted these feelings and remained passive in their care of partners, leading to partners’ needs remaining unmet.…”

“…This cohort of HPPs showed a great capacity to articulate their position with good insight about the challenges and needs of spousal care givers, such as acknowledging that partners were also living daily with PD. Their discourse spoke to a parallel theme arising from partners' experiences described by Bogart (2010) and Bolland et al (2015), in which partners shared how they felt about living with PD. They knew that the impact of the disease was 'felt and lived through by both' (Bogart, 2010, p. 165).…”

“…The current study, investigating HPPs' experiences of engagement with partners of PwP, is part of a broader investigation which included partners' experiences of engagement with HPPs (Bolland et al, 2015). Despite starting each study with similar recruitment strategies, the challenges experienced with recruiting HPPs were significant, and strategies had to be expanded due to poor initial response rates.…”

“…In reviewing the broader PD literature, there is evidence of some aspects of what care givers find meaningful in their engagement with health professionals (Birgersson & Edberg, 2004; Jenkinson et al, 2012; McLaughlin et al, 2011). In particular, Bolland, Bucks, & Guilfoyle (2015) investigated partners’ engagement experiences with HPPs and revealed that partners experienced a lack of entitlement for their own needs to be met, and would find it helpful if HPPs would act as agents of support. The current paper explores the subtleties of engagement experiences from the perspective of the HPP.…”