Turning strain into strength: Exploring the positive psychological changes and growth-ful developments in the loved ones providing care for persons with Parkinson’s Disease

Parkinson’s disease (PD) is a degenerative disease that progressively impacts physical, psychological and social functioning resulting in diminished quality of life (D'Antonio, Zimmerman, & Iacono, 2000; Den Oudsten, Van Heck, & De Vries, 2007; Montel, Bonnet, & Bungener, 2009). The negative effects of PD are not only experienced by persons with PD but also their loved ones – such as their spouses and to a lesser extent their adult-children – because they become the primary caregivers as the disease progresses (D’Amelio et al., 2009). PD caregiving literature has focused predominantly on the negative effects of caregiving, namely caregiver burden (see Aarsland et al., 2007; Caap-Ahlgren & Dehlin, 2002; Harbishettar et al., 2010). The positive effects of PD caregiving remain a less-explored phenomenon. Existing literature suggests that PD caregiving is primarily a negative, burdensome and stressful experience without sufficient acknowledgement of the possible lived experience of PD caregiving and caregivers’ strengths. This interpretative-phenomenological study was designed with a strengths-based perspective (Saleebey, 2012) to explore the lived experience of loved ones providing care for persons with PD. Participants were the primary caregivers for a family member with PD, either spouses or adult-children, residing in the same home as the person with PD. Data collection phase one involved in-depth semi-structured interviews (N = 29). Data collection phase two involved a small focus group (N = 3), as a supplementary measure to draw upon insights and clarify emergent themes from phase one. The transcripts were analysed using an integration of interpretative phenomenological analysis (IPA; Smith & Eatough, 2012) and thematic analysis (TA; Braun & Clarke, 2006). The analysis identified five master themes (and 20 sub-themes): (1) Positive changes in perspectives on living, (2) Personal Growth, (3) Relationship growth, (4) Contextual experience associated with positive changes and growth-ful development, and (5) Lacking in positive changes and growth-ful development. Results indicated a substantial number of loved ones providing care reported positive psychological changes and growth-ful development associated with PD caregiving. However, many others could not identify any positive experiences, only loss and strain since the presence of PD in their lives. Analysis revealed that participants employed meaning-making processes such as deliberate rumination (i.e., life re-evaluation and re-prioritisation), searching for significance (i.e., benefit finding and positive reappraisal), and cognitive processes (i.e., assimilation and accommodation), as well as emotional processing (i.e., exploring and expressing emotions) in a supportive environment (i.e., PD support groups). This resulted in outcomes of meaning made, such as perceptions of positive psychological changes and growth-ful development (i.e., positive changes in attitude, and ways of thinking and being). Findings are consistent with influential growth theories, such as the adversity-activated development theory (AAD) (Papadopoulos, 2007), the revised meaning-making model (Park, 2010) and the post-traumatic growth theory (Calhoun, Cann, & Tedeschi, 2010; Tedeschi & Calhoun, 2004)). Each postulate that people can grow and develop both personally and relationally as a result of a stressful experience (Park, 2010), exposure to ongoing adversity (Papadopoulos, 2007), and post-trauma or major life crisis (Calhoun, Cann, & Tedeschi, 2010; Tedeschi & Calhoun, 2004). Conclusions were consistent with previous caregiving research from other populations (e.g., Farran et al., 1999; Rapp & Chao, 2000; Sanders, 2005) where the PD caregiving situation is associated with loss and compromise, much like dementia caregiving. However, the potential for positive experiences and growth-ful developments is apparent. The precise circumstances where caregiving activities generated everyday strain (e.g., tension, losses, burden, and stress) for the loved ones providing care also appeared to create moments of appreciation and gratification, and allowed for positive transformation and growth-ful development...