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

Deborah Worboys
2016
"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
more » ... sease 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 de [...]
doi:10.4226/66/5a9cd68cb0bd8 fatcat:6kioesrfbvakbdzphv5a2fa344