Identity Continuity in the Face of Biographical Disruption: ‘It's the same me’

Abstract

In Australia, 20% of stroke survivors are aged less than 55 years. These younger survivors value age-appropriate, identity-affirming goals, such as resuming employment. This article reports on a small qualitative research project that explored the experiences of young, higher functioning stroke survivors in re-establishing identity and returning to work. The participants understood identity as both an inner sense of self and as socially and discursively constructed. The research found that the participants actively pursued identity continuity while managing biographical disruption. Resumption of life roles and responsibilities were important for identity re-establishment, but fraught, particularly the return to work. The findings suggest that psychosocial rehabilitation could play a greater role in supporting survivors' resumption of valued life roles, including return to work.

Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research

“…Settings of studies: community (n=34) [7],[52],[55]–[58],[60],[61],[63],[69],[71],[73],[75],[80],[83],[85]–[88],[90]–[94],[96],[99]–[101],[106],[110],[115]–[117],[119]; outpatient (n=5) [54],[62],[65],[74],[118]; care homes (n=3) [111]–[113]; hospital (n=6) [59],[68],[72],[81],[104],[107]; stroke units (n=8) [64],[66],[67],[76],[78],[79],[89],[95]; stroke medical centre (n=1) [108]; and mixed setting such as hospital and community (n=12) [53],[70],[77],[82],[84],[97],[98],[102],[103],[105],[109],[114]. Gender of participants: males and females (n=56) [7],[52],[53],[55]–[57],…”

“…They carefully plan their care, make calculated decisions about their contribution to management, prioritise treatments, and set goals for recovery [53],[54],[58],[67],[70],[74]–[76],[79],[81]–[83],[91],[92],[95]–[98],[100],[110]. Personal goals appear to commonly be focussed on reaching a former social status or role within the family [53],[54],[58],[96],[101]. One study reports that goal setting varies between men and women, with women focussing on resuming tasks within the home and men concentrating on the accomplishment of tasks outside the home environment [59].…”

“…Two papers report that younger, less disabled stroke patients feel uncomfortable attending therapies and support groups alongside older, more disabled patients to whom they struggle to relate [55],[101]. Lastly, enduring stigmatization from others due to the management of disabilities such as the use of a wheelchair or adapted cutlery was reported as a significant treatment burden by patients [52],[56],[63],[71],[74],[80],[88],[99].…”

“…Those who can no longer drive are required to negotiate other methods of transport, which can be difficult due to disabilities [80],[100]. It is common for patients to aspire to return to work and regain their former social position, yet describe a lack of support and information from health services as well as friends, family, and work colleagues [54],[101],[107]. They acquire mobility aids for both inside and outside the home, but waiting times can be an issue for the acquisition of such items [77],[87],[88],[90], and some patients describe having to either purchase these themselves or use inappropriate or unsafe aids putting them at risk of falls [80],[100].…”

“…Patients in developed countries describe the organizations that assist with the arrangement of financial benefits from government agencies as obstructive, poorly co-ordinated, and confusing to navigate [80],[91],[101],[107]. One paper describes how less disabled patients can be denied government benefits, yet be unable to seek employment due to disabilities [101]. Additionally, a fear of losing financial benefits upon return to work due to the inflexibility of government policies can deter patients from returning to employment [91],[107].…”