‘It’s like having another job’: the invisible work of self-managing attendant services

Katzman, Erika; Kinsella, Elizabeth Anne

doi:10.1080/09687599.2018.1497949

Cited by 21 publications

(12 citation statements)

References 70 publications

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“…There is also the question of school culture: if diverse ways of learning and the need for support and support practices are not seen as part of a school's everyday life, such a view can contribute to stigmatization and create a divide between practices seen as normal and those seen as deviant. This contributes further to the student positions considered appropriate and ideal and those considered special and deviant (see Liasidou 2012;Youdell 2006;Ashby 2010).…”

Section: Discourses On Supportmentioning

confidence: 96%

Educating self-governing learners and employees: studying, learning and pedagogical practices in the context of vocational education and its reform

Niemi

Jahnukainen

2019

Journal of Youth Studies

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Section: Discourses On Supportmentioning

confidence: 96%

Educating self-governing learners and employees: studying, learning and pedagogical practices in the context of vocational education and its reform

Niemi

Jahnukainen

2019

Journal of Youth Studies

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“…On the other hand, individuals with chronic diseases are especially challenged to complete up-to-date health documents while often navigating multiple co-morbidities, various health practitioners and complex treatment regimens. 40,[42][43][44][45] While other studies have highlighted the work people engage in to manage their health and everyday life in chronic diseases such as managing self-attendant care, 46 implementing home peritoneal dialysis, 47 adhering to medication schedules 48 and engaging in self-monitoring technologies, 48,49 the work patients do to prepare and maintain their personal health diaries occurs largely in the shadows. 45 And as Montori 50 aptly notes: 'all this work takes effort, attention and time, but limited research exists about how much time this takes; current estimates place that time at two hours per day, a part-time job'.…”

Section: Discussionmentioning

confidence: 99%

Getting airtime: Exploring how patients shape the stories they tell health practitioners

et al. 2021

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Introduction: Effective communication during health encounters is known to decrease patient complaints, increase patient adherence and optimise health outcomes. While the aim of patient-centred care is to find common ground, health practitioners tend to drive the encounter, often interrupting patients within the first minute of the clinical conversation. Optimal care for people with chronic illnesses requires individuals to interact with health practitioners regarding their health concerns, but given these constraints, we know little about how patients strategise conversations with their care providers. This understanding may further our efforts to educate health practitioners and trainees to learn and practice patient-centred care.Methods: A constructivist grounded theory approach with iterative data collection and analysis was used to explore the processes patients use to present and shape their stories for interactions with health practitioners. Twenty-one patients (n = 16 female; 5 male) representing a variety of chronic illnesses participated in semistructured interviews. Using the constant comparative method of analysis, salient themes were ascertained.Results: Patients engage in extensive strategic preparations for productive health encounters. From the data, we identified four related elements comprising patients' process of planning, preparing, and strategising for health encounters: deciding to go, organising to get airtime, rehearsing a game plan, and anticipating external forces. By focusing on the extensive preparatory work patients engage in, our study expands the dimensions of how we understand illness-related work. Assembling personal health information, gathering disease information and achieving equanimity represent the dimensions of this 'health interaction work'. Conclusion:The work patients engage in for health encounters is noteworthy yet often invisible. And work that is unseen may also be undervalued. Acknowledging, illuminating and valuing patients' preparatory work for health encounters add to how we understand patient-centred care, and this offers new targets for us to effectively teach and deliver it.

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“…Disabled students who use universally available supports (e.g., writing centers; Newman et al, 2021) or engage in academic and social activities (e.g., clubs; Mamiseishvili & Koch, 2011) were significantly more likely to persist than disabled students who did not. Yet, some disabled students report that they had to spend additional time navigating inaccessible environments (Fox et al, 2022) or attending to medical care (Katzman & Kinsella, 2018), which limits their ability to participate in activities.…”

Section: Relevant Literaturementioning

confidence: 99%

Doing my best, being healthy, and creating connections: Disabled students’ narratives of collegiate success.

Wilke¹,

Brown²,

Evans³

et al. 2024

Journal of Diversity in Higher Education

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Dominant ideas of student success, such as grade point average (GPA), persistence, and graduation, are constructed as desirable and normalized within educational systems. However, research with minoritized populations, such as lesbian, gay, trans * , bisexual, queer+ (LGTBQ+) students or Native American students, demonstrates that students' definitions of success may not align with normative frameworks. Disabled students represent over 19% of undergraduates in the United States. Although disabled students are an important and growing population, their definitions of success remain unexplored. Existing research indicates that academic definitions of success are likely to reflect the ableism woven into postsecondary institutions and thus practitioners or researchers who are socialized into normative paradigms of success may have difficulty supporting disabled students' learning and development. In this study, we used cripistemological frameworks and narrative methodological approaches to explore 24 disabled students' stories of success. Students' definitions differed from those of their institutions; students focused on social integration, being and staying healthy, learning new concepts, and building communities. We found that disabled students "cripped" success by resisting normative definitions. Although students held academic goals, those goals were substantively adapted to fit with crip time, crip trying, and creating community. One student in this study demonstrated crip gain by viewing their disability as an advantage, while others directly challenged the ideological systems that are used to construct smartness. When interpreting these findings, it is important to understand that they represent predominantly White-lived experiences. Future research must include perspectives of disabled students of color.

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‘It’s like having another job’: the invisible work of self-managing attendant services

Cited by 21 publications

References 70 publications

Educating self-governing learners and employees: studying, learning and pedagogical practices in the context of vocational education and its reform

Educating self-governing learners and employees: studying, learning and pedagogical practices in the context of vocational education and its reform

Getting airtime: Exploring how patients shape the stories they tell health practitioners

Doing my best, being healthy, and creating connections: Disabled students’ narratives of collegiate success.

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