Navigating stroke care: the experiences of younger stroke survivors

Abstract

Stroke care can be conceptualised as a temporal field of social activity and relationships which shapes variations in experiences of care among younger stroke survivors, and differences in expectations of support at different time points after stroke. On entering the field of stroke participants reported needing health care professional guidance and expertise to manage the acute event, yet difficulties accessing information in hospital limited the agency of some individuals wanting to take an active role in their recovery. After discharge from hospital variations in experiences of care among participants were more evident, with a number still seeking professional guidance, and requiring the capital and agency to navigate the field of stroke. Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed.

Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study

“…This can explain why older survivor age predicted higher caregiver QOL in our study. In fact, younger stroke survivors have more problems in term of identity, life satisfaction, social and sexual relationship, finances and support when they return to work (Martinsen, Kirkevold, & Sveen, ; Roding, Glader, Malm, & Lindstrom, ; Sadler, Daniel, Wolfe, & McKevitt, ). The association between higher survivor physical functioning and higher caregiver QOL was expected since better survivor physical functioning, as also reported in other studies (Ogunlana et al., ; Pucciarelli et al., ), represents fewer problems in caregiver life.…”

Pierre Bourdieu's Theory of Practice offers nurses a framework to uncover embodied knowledge of patients living with disabilities or illnesses: A discussion paper

“…Nine research teams specifically addressed social support (Dumas et al., ; Dyson et al., ; Henderson et al., ; McKeever & Miller, ; Mithen et al., ; Noiesen et al., ; Sadler et al., ; Savage et al., ; Warin et al., ). When patients become disabled and ill, they often require personal medical services or other forms of social support that compensate for the effects of loss of function.…”

“…Researchers used Bourdieu's theory to uncover that living with disabilities or illnesses is contingent on embodied dispositions shared by members of a social class. For example, Henderson et al (2014) and Sadler, Daniel, Wolfe, and McKevitt (2014) found that limited access to social support had a negative impact on disease management because social support networks often provided resources or capital needed to negotiate self-management activities. In contrast, access to social capital, such as family support, encouraged patients to follow health care professionals' guidelines (Dumas, Robitaille, & Jette, 2014;Mithen, Aitken, Ziersch, & Kavanagh, 2015;Noiesen, Larsen, & Agner, 2004;Savage, Dumas, & Stuart, 2013;Warin et al, 2008).…”

“…Nine research teams specifically addressed social support (Dumas et al, 2014;Dyson et al, 2011;Henderson et al, 2014;McKeever & Miller, 2004;Mithen et al, 2015;Noiesen et al, 2004;Sadler et al, 2014;Savage et al, 2013;Warin et al, 2008 Across all three themes of resistance to seeking help, marginalization and social support, the research teams included in this discussion (N = 18) emphasized two of the three concepts of Bourdieu's theory-the concept of capital (power) and habitus (dispositions)-to consider the impact of the embodied socioeconomic conditions of patients, the resources available to them, or how their lifestyles were affected by disability and illness. In this discussion paper, researchers revealed that health may be an embodied form of capital for patients suffering from disabilities and illnesses (Musolino et al, 2015).…”

“…Bourdieu's concept of "field" (structures) was underused by social and healthcare researchers who examined disability and illness across all three themes in this discussion paper. Only five research teams briefly referenced the concept of field (Dyson et al, 2011;Gibson et al, 2007;McKeever & Miller, 2004;Sadler et al, 2014;Townsend, 2012), and none the research teams discussed the concept of field in depth. Nonetheless, the field of health care, like all "fields," as regarded by Bourdieu's theory of practice, is clearly a "universe of belief" (Bourdieu, 1990;Collyer et al, 2015;Nairn & Pinnock, 2017;Rhynas, 2005).…”