This paper describes the impact of chronic illness on self and identity among 35 adults with traumatic spinal cord injury (paraplegic), living in the community. The reconstruction of self and identity post spinal cord injury is conceptualised as a pendulum. The pendulum of self represents a dynamic model of identity reconstruction. The pendulum suggests that identity reconstruction is a process that swings back and forth like a pendulum between the nondisabled and disabled aspects of self. The pendulum depicts five predominant identity views (outcomes). These are: 1) the former self; 2) the supernormal identity; 3) the disabled identity as total self; 4) the disabled identity as an aspect of the total self; and 5) the middle self. These identity views are influenced by five experiences (processes). These are: 1) loss; 2) sustainment; 3) integration; 4) continuity and 5) development of the self. It is suggested that frameworks of identity reconstruction or reconstitution which include both process and outcome components may elucidate more clearly the impact of chronic illness on self and identity. In addition, this pendulum model of identity reconstruction is an alternative approach to traditional sociological conceptions of identity reconstruction.
Children and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with "transitioning" to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in "becoming men," nor has there been critical conceptual work problematizing notions of "normal" adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank's notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through "narratives of nondifference," wherein participants worked to establish identities as typical "guys." Within limited fields of school and work, participants distanced themselves from the label of "disabled" and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of "normal" is reproduced and reinforced in health and social programs and closes off other narratives and possibilities.
This study investigated the physical and psychosocial consequences of living with osteoarthritis (OA) in daily life and peoples' views of total knee arthroplasty (TKA) and the role of physiotherapy. In-depth interview data were used from a prospective qualitative study conducted by the senior author (KY). Participants were 15 volunteers with knee OA who were awaiting TKA at a specialized orthopaedic tertiary care facility in Toronto. A modified grounded theory method approach was used to analyze the interview data. The findings showed that experiences for the participants with OA were conceptualized as a "breakpoint." The breakpoint was centred on the experiences/processes of living with unremitting pain, the limitations of mobility, leisure and social activities, and the resulting consequences to the participant's physical and psychological well-being. In addition to the above experiences, participants also discussed their perceptions of TKA surgery. The findings showed that expectations of TKA were linked to participants' knowledge of the procedure and its outcomes. The participants listed acquaintances, friends, family members, and doctors as the main sources of knowledge for TKA. On the basis of the above analysis, recommendations are made for developing a preoperative physiotherapy program that would focus on minimizing preoperative disability and maximizing postoperative recovery.
In this article we provide a critical reflection on the integrated use of solicited audio diaries, photography, and interviews in a study with disabled young men transitioning to adulthood. In the study, we developed a methodological approach for illuminating the intersectionality of gender, disability, and generation (life stage) identities. Drawing from a critical Bourdieusian perspective, we suggest that rather than producing single or "true" accounts, the combination of methods can be used to elucidate how participants establish, maintain, and reform their identities in everyday practices. Furthermore, we discuss how participants' acts of data creation are analyzable events in themselves, wherein participants do work to establish, maintain, and reform their identities. We conclude with some lessons learned and future directions.
Health service providers and policymakers should recognize the long-term health and social needs of W-TBI and address societal factors that result in financial and structural barriers, to ensure access to needed services.
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