‘A stony road… a 19 year journey’: ‘Bridging’ through late-stage Parkinson’s disease

Abstract

Abstract Studies reporting the lived experience of late-stage Parkinson’s disease are sparse. Using constructivist grounded theory and centre-stage storyline generation as the methodological approach, this study reports on 69 interviews with 13 people with late-stage Parkinson’s disease and their family carers who were recruited from the caseload of two specialist Parkinson’s disease nurses working in North Wales and one consultant geriatrician. The interviews were conducted longitudinally between June 2007 and April 2008, and all participants were diagnosed with late-stage idiopathic Parkinson’s disease using Brain Bank clinical criteria. All interviews and the subsequent sharing, modification and testing of the results of data analysis were conducted in the person’s home and with their participation as partners in the research process. From this process, bridging emerged as the centre-stage storyline in adjusting to life with late-stage Parkinson’s disease, and this consisted of three temporal stages, namely: 1) building on the past; 2) bridging the present and 3) broaching the future. These three stages were underpinned by three linked sequential foundations, namely biographical, situational and crumbling. These stages, foundations and properties of bridging have important implications for the understanding of late-stage Parkinson’s disease and informing the nursing role in developing and providing appropriate supportive interventions.