Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians

Setchell, Jenny; Thille, Patricia; Abrams, Thomas; McAdam, Laura; Mistry, Bhavnita; Gibson, Barbara E.

doi:10.1111/cch.12526

Cited by 20 publications

(26 citation statements)

References 24 publications

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“…The consultative advisory interviews were designed to provide input into the analysis of the data generated from the observations and dialogues and were conducted separately with three young people, four families, and eight clinicians. We have published a more detailed description of the project and methods elsewhere (Setchell, Thille, et al, 2018; Thille et al, 2018). Consent was obtained from each participant at time of recruitment and confirmed immediately prior to engagement in each data generation method.…”

Section: Project Overviewmentioning

confidence: 99%

“…In this study, we observed that human (client, family, clinician) emotional responses (grief, frustration, fear) to the effects of DMD (loss of physical strength, changes in bodily appearance, increasing dependence on caregivers and assistive technologies such as wheelchairs, splints, cough assist machines) were often put aside. A culture of exclusion was re/created in the clinic where everyone “knows” not to “go there” (also see Abrams et al, 2019; Setchell, Thille, et al, 2018).…”

Section: Section 2: Not Cheer*mentioning

confidence: 99%

“…The study was conducted in response to a need to move away from research that only considers biomedical aspects of DMD such as seeking a cure, increasing lifespan, or optimizing physical function (Setchell, Thille, et al, 2018). Instead, our study focused on investigating and enhancing what we termed the "human" aspects of care: the psychological, social, existential, embodied aspects.…”

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confidence: 99%

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Cheer* in Health Care Practice: What It Excludes and Why It Matters

et al. 2019

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Clinicians’ positive demeanor and “strengths based” focus can include working to create a cheerful atmosphere in health care environments, cheering for improvements in assessment outcomes, and cheering up clients in situations of decline. Drawing from philosopher Karen Barad’s theories of inclusions and exclusions, we investigated what comes to matter (and what is excluded from mattering) when there is cheerfulness, cheering, and so forth (cheer*) in the day-to-day practices of a neuromuscular clinic. We worked collaboratively with clinicians, young people with Duchenne muscular dystrophy, and their families to co-examine the clinic in three iterative exploratory method spaces: (a) group “dialogues” with clinicians; (b) consultative interviews with children, families, and clinicians; and (c) transdisciplinary research team analysis sessions. Cheer* made some things matter in the clinic (“normal” physical function, “positive” emotions, test scores, compliance); and excluded others (grief and loss, “non-normative” bodies and lives, alternative practices, embodied knowledge). We discuss implications across health care settings.

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Section: Project Overviewmentioning

confidence: 99%

Section: Section 2: Not Cheer*mentioning

confidence: 99%

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confidence: 99%

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Cheer* in Health Care Practice: What It Excludes and Why It Matters

et al. 2019

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“…The final tension was between presentation of biomedical information as well as more human aspects of living with LBP. By human we mean the nonbiological or biomechanical dimensions of LBP, such as the psychological, social, interpersonal, cultural, or ethical aspects of living with, and managing, health conditions [ 43 ], in this case LBP. As a complex and multifaceted approach to LBP is now widely advocated in research to include more than just biomedical elements [ 6 , 44 ], the website presented both biomedical and human aspects of LBP.…”

Section: Resultsmentioning

confidence: 99%

Web-Based Consumer Health Education About Back Pain: Findings of Potential Tensions From a Photo-Elicitation and Observational Study

Setchell

Turpin

Costa

et al. 2020

JMIR Rehabil Assist Technol

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Background Low back pain (LBP) is a leading cause of disability worldwide, with huge social and economic impact. There is extensive extant literature investigating the efficacy of various management approaches ranging from surgery to psychological interventions to exercise. However, this work has focused almost entirely on efficacy in terms of pain reduction, functional improvement, and psychological changes. This focus has meant that unanticipated social or socio-cultural effects of back pain health care have received little attention. Objective This study aimed to scrutinize some of the conceptual tensions inherent in contemporary LBP health care approaches and to highlight their material effects. Methods We used a qualitative research design adapted from discourse analysis, which was able to consider key discursive tensions underpinning a LBP website. Data collection involved observing the interaction between adult participants with LBP and the website in the following two ways: (1) observational interview, where participants were observed interacting with the website for the first time and asked to discuss their responses to it as they moved through the website and (2) photo-elicitation, where for a month after their first use of the website, people took photographs of what was happening in their lives when they thought of the website and discussed them in a follow-up interview. We used a postcritical discourse analysis approach to examine data produced from these methods. Results Our postcritical discourse analysis identified key discursive tensions, including between living with and reducing LBP, keeping active and resting, and patient choice and giving guidance. Conclusions Our analysis suggests ways for considering less dominant perspectives without having to discard the benefits of dominant ones. Although the focus of LBP discourses has changed (less biomedical and less about cure), they still hold on to some of the problematic dominant paradigmatic concepts such as biomedicine and individualism. The tensions we highlight are likely to be highly useful for teaching and implementing LBP care across multiple health care settings.

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“…Rather than presenting any notion of finalized "findings", we ground the mapping in our shared deliberations with the intent of contributing new insights regarding PCC and rehabilitation. Observational study investigating humanistic care practices in an outpatient multidisciplinary "neuromuscular clinic" in a children's rehabilitation center -Canada [23] Observation of a 13-year-old boy, his mother, a nurse and an OT. The event is centered on attempts to convince the boy to agree to be weighed with a mechanical lift 2…”

Section: Analysis: Co-producing Pccmentioning

confidence: 99%

The micro-politics of caring: tinkering with person-centered rehabilitation

Gibson

Terry

Setchell

et al. 2019

Disability and Rehabilitation

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Purpose: In this paper, we critically investigate the implementation of person-centered care with the purpose of advancing philosophical debates regarding the overarching aims and delivery of rehabilitation. While general agreement exists regarding person centered care's core principles, how practitioners reconcile the implementation of these principles with competing practice demands remains an open question. Materials and methods: For the paper, we drew on post-qualitative methods to engage in a process of "diffractive" analysis wherein we analyzed the micro-doings of person-centered care in everyday rehabilitation work. Working from our team members' diverse experiences, traditions, and epistemological commitments, we engaged with data from nine "care events" generated in previous research to interrogate the multiple forces that co-produce care practices. Results: We map our analyses under three categories: scripts mediate practice, securing compliance through "benevolent manipulations", and care(ful) tinkering. In the latter, we explore the notion of tinkering as a useful concept for approaching person centered care. Uncertainty, humility, and doubt in one's expertise are inherent to tinkering, which involves a continual questioning of what to do, what is best, and what is person centered care within each moment of care. The paper concludes with a discussion of the implications for rehabilitation and person-centered care. ä IMPLICATIONS FOR REHABILITATIONDeterminations of what constitutes good, better, or best rehabilitation practices are inevitably questions of ethics. Person-centered care is promoted as good practice in rehabilitation because it provides a framework for attending to the personhood of all engaged in clinical encounters. Post-critical analyses suggest that multiple interacting forces, conditions, assumptions, and actions intersect in shaping each rehabilitation encounter such that what constitutes good care or personcentered care cannot be determined in advance. "Tinkering" is a potentially useful approach that involves a continual questioning of what to do, what is best, and what is person-centered care within each moment of care. ARTICLE HISTORY

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Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians

Cited by 20 publications

References 24 publications

Cheer* in Health Care Practice: What It Excludes and Why It Matters

Cheer* in Health Care Practice: What It Excludes and Why It Matters

Web-Based Consumer Health Education About Back Pain: Findings of Potential Tensions From a Photo-Elicitation and Observational Study

The micro-politics of caring: tinkering with person-centered rehabilitation

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