Bhavnita Mistry

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.

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.

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 Rehabilitation Service 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.

Transitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy

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 Rehabilitation Children 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.

A multi-method approach to studying activity setting participation: integrating standardized questionnaires, qualitative methods and physiological measures

Abstract Purpose: This study investigated the feasibility of integrating three diverse methods for studying disabled youth’s experiences of activity settings: standardized questionnaires, qualitative methods and physiological measures. The article describes a case study of data collection in a real-life setting to outline the opportunities, challenges and lessons learned for future research. Methods: The methods included (a) two newly developed quantitative measures of qualities of home and community activity settings (MEQAS) and youth experiences (SEAS); (b) youth-friendly qualitative methods, including photo-elicitation, observations, electronic interviews and face-to-face interviews; and (c) an innovative system to collect physiological data (the HEART system) that provided insight into the experiences of youth beyond other methods. Results: The study demonstrated that these diverse methods measures can be practically combined to study activity setting participation experiences. The measures provided different types of data that informed one other and allowed a rich interpretation and deep understanding of the participant’s experiences. We discuss practical lessons concerning the joint use of the three methods, lessons specific to each method, and lessons concerning next steps for integrating the data. Conclusions: Combined methodologies hold great promise for investigations of the participation experiences of disabled youth in future research. Implications for Rehabilitation This feasibility study demonstrated that standardized questionnaires, qualitative methods, and physiological measures can be practically combined to study the real-world activity setting participation experiences of disabled youth. Combined methodologies hold great promise for investigations of the participation experiences of “hard to study” disabled youth in future research. Clinically it is important to look at youth-based experiences and priorities when planning interventions rather than focusing on specific skills or inclusion for its own sake.

Assembling activity/setting participation with disabled young people

Abstract 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.

Evaluation of the Reliability of the Challenge when used to Measure Advanced Motor Skills of Children with Cerebral Palsy

ABSTRACT Aims: The Challenge was designed as an extension to the GMFM-66 to assess advanced motor skills of children with cerebral palsy (CP) who walk/run independently. This study evaluated the Challenges inter-rater and test–retest reliability. Methods: Thirty children with CP (GMFCS level I [n = 24] and II [n = 6]) completed the Challenge, with re-testing one to two weeks later. Seven physiotherapist assessors passed the Challenge criterion test pre-administration. A single assessor administered and scored test and retest sessions (test–retest reliability). A second assessor independently scored one of these sessions (inter-rater reliability). Results: Inter-rater reliability was excellent (ICC = 0.97, 95%CI 0.94–0.99, CoV < 10%), with no bias (Bland-Altman plot). Test–retest ICC was excellent (ICC = 0.94, 95% CI 0.88–0.97. CoV < 10%, and Minimum Detectable Change (MDC90) was 4.47 points. Many participants indicated practising at home pre-retest session. Conclusions: There was strong rating consistency between assessors. While test–retest ICC estimates were also high, Challenge scores were higher at retest. The MDC90 was still in a range (>4.5 points) that seems clinically viable for change detection. Test–retest reliability could be reassessed with children instructed not to practice between assessments to determine the extent to which between-session practice influenced scores.

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.