This paper evaluates a study which aimed to enhance clinical care of young people with Duchenne or Becker muscular dystrophy (MD) and their families in two Canadian neuromuscular clinics. We report ...on how/why the study changed clinical practices in relation to the 'human' (e.g., emotional, social, existential, cultural) dimensions of living with MD.
The intervention involved regular dialogical exchanges with clinicians across the two sites, during which direct observations of the clinics' care practices were discussed and changes were planned. We drew from realist evaluation approaches to assess changes in clinical care associated with the intervention. Data sources included dialogical exchanges; clinic observations; interviews with clients, families and clinicians; and team analysis sessions.
Our evaluation suggests the clinical teams shifted their thinking and practices towards greater consideration of human aspects of living with MD including: more routinely attending to emotional, social and experiential dimensions of living with MD; reconceptualisation of risk; and considerations of affective aspects of clinical care. Not all clinicians changed their thinking and practices in the same ways, or to the same extent, and there were differences between the sites. These differences were likely due to numerous factors, including varying levels of clinician comfort with examining and shifting their own practices, and differing formal and informal clinic routines at each site.
Overall, this intervention was able to shift clinic practices, and could feasibly be adapted across rehabilitation settings.
Health professional education has traditionally relied on the acquisition of vertical expertise whereby learners apply top-down principles and methods to develop clinical skills. In this critical ...qualitative study, we examined horizontal processes of “knotworking” and “tinkering” in the development of expertise amongst clinicians and trainees in a children's rehabilitation outpatient clinic. Using ethnographic methods of observation, interviews and group dialogues, the study explored what constitutes “good” child healthcare, the risks of separating humanistic from biomedical care, and how discursive assumptions and conventions shaped learning and practices. Our analyses identified processes of responsive caring that integrated medical and humanistic imperatives into transposable, dynamic repertoires through which clinicians could pivot in response to child and family needs and priorities, resource access, and socio-material contexts. We discuss the challenges for teaching and mentoring medical trainees who have to both learn and unlearn particular practices in their efforts to develop responsive expertise.
For those with chronic, progressive conditions, high quality clinical care requires attention to the human dimensions of illness—emotional, social, and moral aspects—which co-exist with biophysical ...dimensions of disease. Reflexivity brings historical, institutional, and socio-cultural influences on clinical activities to the fore, enabling consideration of new possibilities. Continuing education methodologies that encourage reflexivity may improve clinical practice and trainee learning, but are rare. We piloted a dialogical methodology with a children’s rehabilitation team to foster reflexivity (patient population: young people with Duchenne’s or Becker’s muscular dystrophy). The methodology involved three facilitated, interactive dialogues with the clinical team. Each dialogue involved clinicians learning to apply a social theory (Mol’s
The Logic of Care
) to ethnographic fieldnotes of clinical appointments, to make routine practice less familiar and thus open to examination. Discourse analyses that preserve group dynamics were completed to evaluate the extent to which the dialogues spurred reflexive dialogue within the team. Overall, imagining impacts of clinical care on people’s lives—emphasized in the social theory applied to fieldnotes—showed promise, shifting how clinicians interpreted routine practices and spurring many plans for change. However, this reflexive orientation was not sustained throughout, particularly when examining entrenched assumptions regarding ‘best practices’. Clinicians defended institutional practices by co-constructing the metaphor of
balancing logics
in care delivery. When invoked, the balance metaphor deflected attention from emotional, social, and moral impacts of clinical care on patients and their families. Emergent findings highlight the value of analysing reflexivity-oriented dialogues using discourse analysis methods.
This paper draws on studies carried out in Canada (2016-2018) and the UK (2009-18) which explored the experiences of boys and men with Duchenne muscular dystrophy (DMD). Life expectancy with DMD has ...increased significantly and generations of men lead lives that many did not expect them to be leading. This paper searches our data to see if boys and men with DMD are supported to manage the precariousness of a life shorter than the 'norm'. Our studies had focuses on transition to adulthood, gender, social care, interactions in rehabilitation clinics, and managing conversations about death. The paper discusses how respondents framed DMD within time and the life-course. Our analysis suggests that ableist assumptions about time make the management of a challenging disease such as DMD even more challenging. We found little evidence of boys and men being helped to think through how to plan for a life expectancy that kept shifting. Keywords: Duchenne muscular dystrophy, time, shorter lives, ableism
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.
Abstract
Purpose: Youth with progressive conditions are living longer, and there is increased health care focus on assisting them with "transitioning" to adult services and adult life. The purpose of ...this investigation was to examine key discourses and normative assumptions underpinning transitions best practices and how they are reflected in the experiences of young men with Duchenne muscular dystrophy (DMD). Methods: Using a critical perspective, we qualitatively analyzed influential transitions best practice documents to identify their underpinning discursive assumptions. We compared these to the analysis of qualitative interviews and diary data from a study of 11 young men with DMD. Results: Transitions best practices are underpinned by discourses of developmental progression. They reproduce notions that associate successful transitions with becoming as independent as possible, approximating normal life trajectories, and planning for future adulthood. The accounts of youth with DMD both reflected and resisted these future-oriented discourses in creative ways that maintained positive personal identities. Conclusions: Normal developmental progression towards typical adult roles constitutes the generally accepted aims of transitions practices. Such aims may not be appropriate for all youth with disabilities. We suggest that alternative understandings of the life course and approaches to care need to be considered alongside dominant practices.Implications for RehabilitationChildren and youth with progressive conditions, such as DMD, are living longer and there is increased interest in designing programs that will assist them with "transitioning" to adulthood.Transitions best practices reflect dominant social values and assumptions about what constitutes a successful adulthood, embedded in goals such as independent living, self-management and obtaining work.Rehabilitation professionals should be aware of both positive (e.g. feelings of achievement) and negative (e.g. anxiety about the future) consequences of transitions practices that emphasize normal social developmental trajectories and milestones.Discussions with youth should offer multiple possibilities for living a good life in the present and provide support to address negative feelings and the progressive effects of DMD.
The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. ...Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management.
Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach.
Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: "Competing priorities between healthcare providers, parents, and boys" contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: "The realities of living with Duchenne's Muscular Dystrophy," with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD.
HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations.
IMPLICATIONS FOR REHABILITATION
HCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes.
Quality of life and living a "normal" life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management.
Weight management recommendations should be based upon the individual needs and priorities of the family.
Rehabilitation research investigating activity participation has been largely conducted in a realist tradition that under‐theorises the relationship between persons, technologies, and socio‐material ...places. In this Canadian study we used a post‐critical approach to explore activity/setting participation with 19 young people aged 14 to 23 years with complex communication and/or mobility impairments. Methods included integrated photo‐elicitation, interviews, and participant observations of community‐based activities. We present our results using the conceptual lens of assemblages to surface how different combinations of bodies, social meanings, and technologies enabled or constrained particular activities. Assemblages were analysed in terms of how they organised what was possible and practical for participants and their families in different contexts. The results illuminate how young people negotiated activity needs and desires in particular ‘spacings’ each with its own material, temporal, and social constraints and affordances. The focus on assemblages provides a dynamic analysis of how dis/abilities are enacted in and across geotemporal spaces, and avoids a reductive focus on evaluating the accessibility of static environmental features. In doing so the study reveals possible ‘lines of flight’ for healthcare, rehabilitation, and social care practices.
Abstract
Purpose: The aim was to examine the leisure activity setting experiences of two groups of youth with severe disabilities - those with complex continuing care (CCC) needs and those who have ...little functional speech and communicate using augmentative and alternative communication (AAC). Method: Twelve youth took part in a mixed methods study, in which their experiences were ascertained using qualitative methods (observations, photo elicitation and interviews) and the measure of Self-Reported Experiences of Activity Settings (SEAS). Data integration occurred using a "following a thread" technique and case-by-case analysis. Results: The analysis revealed several highly valued aspects of leisure activity setting experiences for youth, including engagement with others, enjoying the moment, and control and choice in selection and participation in activity settings. Conclusions: The findings provide preliminary insights into the nature of optimal activity settings for youth with severe disabilities, and the mediators of these experiences. Compared to other youth, the data illustrate both the commonalities of experiences and differences in the ways in which these experiences are attained. Implications for research concern the utility of mixed methods approaches in understanding the complex nature of participation experiences. Implications for clinical practice concern the importance of not assuming the nature of youths' experiences.Implications for RehabilitationService providers can lose sight of the importance of broader concepts of belonging, fun, and control and choice when providing interventions that focus on "participating" in an "activity" to build specific skills.In addition to the skill-based outcomes for youth with disabilities that are valued by the rehabilitation system, we suggest that consideration needs to be given to other types of outcomes that matter to youth, such as participating in a leisure activity for the sake of belonging or having fun.It is important not to assume that youth with severe disabilities are not enjoying their participation or are not benefiting from their leisure experiences.It is important not to "over-therapize" youth with disabilities and promote a balanced approach to therapy and leisure participation, by discussing with youth and families the beneficial developmental outcomes that can accrue from leisure activities.
Aims: This article describes a qualitative study aimed at producing child-centered guidelines for the administration of a measure of children's advanced gross motor skills, the Challenge. The purpose ...of the guidelines is to promote collaborative interpretation and application of results. Methods: The study was conducted in three Canadian cities and included 31 children with cerebral palsy (GMFCS Level I or II) ages 8 to 18 and one parent/caregiver per child (N = 62 participants). Following Challenge administration, each child and one of their caregivers took part in separate qualitative interviews. Analyses were oriented to exploring understandings of the purposes of testing, impressions of the child's performance, and perceptions of how results might inform activity choices and interventions. Results: Three themes were generated: investments in doing well; I know my child/myself; and caregivers' interpretations of child's performance. Themes were then integrated with principles of child and family-centered care to develop The Challenge Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. Conclusions: The Guidelines are the first of their kind to integrate child and family-centered principles into the administration protocol of a motor measure. Although developed for the Challenge, the principles have applicability to other rehabilitation measures.
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