Assembling activity/setting participation with disabled young people

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

An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: The importance of belonging, fun, and control and choice

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\u27 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

Affect, intensity, and moral assemblage in rehabilitation practice

This paper uses the philosophy of Deleuze and Guattari to explore how disability is organized in the clinical setting, focusing on young men with muscular dystrophies. The authors of Capitalism and Schizophrenia present a robust philosophy of affect, used in three ways. First, they allow us to trace the interaction of bodies (natural, social, material or otherwise) in the clinical space. Second, Deleuze and Guattari provide a philosophy of intensity. We use this to explore the emotional intensities surrounding progressive disability in the clinical space. Finally, we argue that affective philosophy allows us to explore spaces of morality and obligation, among patients, parents, and practitioners, alike. Each facet is grounded in ethnographic data. The paper ends looking into disability studies’ critiques of medicalization and capitalism, in relation to critical rehabilitation science. Disability studies and critical rehabilitation science are steeped in affect. There is, however, much more work to do, in tandem

Development of Child and Family-Centered Engagement Guidelines for Clinical Administration of the <i>Challenge</i> to Measure Advanced Gross Motor Skills: A Qualitative Study

<p><i>Aims</i>: 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 <i>Challenge</i>. The purpose of the guidelines is to promote collaborative interpretation and application of results. <i>Methods</i>: 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 (<i>N</i> = 62 participants). Following <i>Challenge</i> 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. <i>Results</i>: 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 <i>Challenge</i> Engagement Guidelines directed at reducing test anxiety and enhancing shared decision making. <i>Conclusions</i>: 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 <i>Challenge</i>, the principles have applicability to other rehabilitation measures.</p

Becoming Men: Gender, Disability, and Transitioning to Adulthood

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 (2010) notion of the narrative habitus we examined how participants re/negotiated identities in everyday practices. Our analysis suggested disability, masculinities and generational (life stage) identities intersected through ‘narratives of non-difference’, 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.Canadian Institutes of Health Research (grant number 103245)

Disability and Dignity-Enabling Home Environments

In Canada where long-term care is primarily oriented to elderly persons and affordable accessible housing is limited, younger disabled adults may be living in circumstances that do not meet their health needs and contribute to their social exclusion. The purpose of this study was to undertake an ethical analysis of what constitute an ‘adequate’ home environment for adults with significant mobility disabilities. An integrated design was used that combined qualitative interviews with normative ethical analysis in an iterative process. Twenty interviews with 19 participants were conducted in Ontario, Canada with two groups: younger adults (ages 18 to 55) with mobility disabilities and ‘decision-makers’ who consisted of policy makers, program administrators and discharge planners. Data were analyzed using a critical disability ethics approach and processes of reflective equilibrium. Drawing on Nora Jacobson’s taxonomy of dignity and pluralistic approaches to social justice, the concept of ‘social dignity’ provides a lens for exploring the adequacy of home environments for disabled people. Analyses suggested seven threshold conditions necessary for a dignity-enabling home: the ability to form and sustain meaningful relationships; access to community and civic life; access to control and flexibility of daily activities; access to opportunities for self-expression and identity affirmation; access to respectful relationships with attendants; access to opportunities to participate in school, work or leisure; access to physical, psychological and ontological security. The results have implications for housing, health and social care policies, and political reform. Social-dignity provides a normative ethical grounding for assessing the adequacy of home environments. The threshold elements outline specific dignity-enabling conditions that are open to further specification or elaboration in different contexts.Canadian Institutes of Health Research Catalyst Grant: Ethics (#87367

Enhancing the human dimensions of children’s neuromuscular care: piloting a methodology for fostering team reflexivity

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

Becoming men: Gender, disability, and transitioning to adulthood

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.</jats:p