The 'lived experience' of long-term stroke survivors in Newcastle, Australia

Aim: The aim of this thesis was to explore the long-term experience of community dwelling stroke survivors at 1, 3 and 5 years after stroke. Design: A qualitative study using a modified grounded theory approach. The primary data collection method was semi-structured interviewing. Setting: Community dwelling stroke survivors in metropolitan Newcastle, New South Wales, Australia. Participants: Twelve community dwelling stroke survivors (4 participants from each cohort) discharged from a tertiary referral hospital. 6 men and 6 women aged between 42 and 92 years of age participated in this study. Main Outcome Measure: Qualitative outcomes were participants' perceptions using in-depth, semi-structured interviews with participants from 3 community based cohorts of stroke survivors at 1, 3 and 5 years post stroke. Results: Four main themes emerged from the data that were experienced by participants within each cohort and between cohorts. These were feelings of altered participation in life, low mood, modulating factors and experience with the health system. A modified grounded theory approach was used for data analysis using a process of constant comparison. Conclusions: Altered participation and mood changes continued well beyond discharge and in some cases commenced after discharge in this sample of stroke survivors. Lifestyle changes were further influenced by experiences with the health system and knowledge about stroke, as well as the presence or absence of insight, hope for the future, faith, and support. Use of qualitative methodology extends our understanding of the extent and nature of life-style changes after stroke. There is a need for enhanced services to monitor and address the ongoing needs of community dwelling stroke survivors.