Yani Hamdani

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.

Longitudinal Evaluation of Transition Services (“LETS Study”): Protocol for outcome evaluation

BackgroundBecause of advances in medical treatment, most children with physical disabilities can expect to achieve near normal life spans. Typically, coordinated teams of health care providers in specialized pediatric settings care for these children. As these children reach adulthood, however, the availability of services and expertise changes because the adult health care system has different processes designed to meet their specialized needs. Gaps in continuity of care during the transition from pediatric to adult services, and associated poor health outcomes are well documented. In response, new models of care are being introduced to address the complex process of health care transition. This paper describes a study protocol of a client-centred, prospective, longitudinal, mixed-method evaluation of linked model of health care across the lifespan (the LIFEspan Model), offered by a pediatric rehabilitation centre and an adult rehabilitation centre.MethodThis project will include a process and an outcome evaluation of the LIFEspan Model. The process evaluation will detail the specific service delivery that occurs with respect to preparation for transition and transfer of care through chart audits of pediatric medical records and qualitative interviews with LIFEspan staff. The outcome evaluation will measure the effect of the model on: 1) maintaining continuity within the health care system from pediatric to adult care; and 2) secondary outcomes related to health, well-being, social participation, transition readiness, and health care utilization of youth with cerebral palsy and acquired brain injury. Standardized instruments will include Health Utilities Inventory, Assessment of Life Habits, Arc’s Self-Determination, Assessment of Health-Related Quality of Life, Partners in Health Questionnaire, Social Support Questionnaire, and Self-Efficacy for Managing Chronic Disease.DiscussionThe LETS study will be original in its undertaking of a prospective examination of outcomes 1-year post-transition, use of multiple comparison groups, and absence of disability-related exclusion criteria ensuring that the transition experiences of varied populations of young people and their families will be represented.Trial registrationhttp://www.clinicaltrials.gov, ID NCT00975338

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.

Thinking critically about client-centred practice and occupational possibilities across the life-span

Abstract Background: Client-centred occupational therapy practice is tacitly guided by prevailing social values and beliefs about what are “normal” occupational possibilities. These values and beliefs privilege some occupations and negate others. Aim: This study aims to identify and problematize assumptions regarding the value of approximating normal occupational possibilities, showing how these assumptions influence and may diminish client-centred practice. Methods: Using empirical research examples it demonstrates how occupational therapists and clients are immersed in contexts that shape values and beliefs about what are considered “normal” occupations and how these taken-for-granted values structure occupational therapy practice. Conclusion: Critique of client-centred practice requires conscious reflexivity, interrogating our own and our clients’ predispositions to value some occupations over others. Engaging in critical reflexivity can help therapists develop new perspectives of how client-centred practice can be applied that includes enabling possibilities for occupations that would be missed altogether in the pursuit of “normal’.

Gender and Transition From Pediatric to Adult Health Care Among Youth With Acquired Brain Injury: Experiences in a Transition Model

OBJECTIVE To explore gender and sex differences in experiences of transitioning to adult health care among young adults with acquired brain injury (ABI) who take part in a coordinated model of transitional care. DESIGN Descriptive design using in-depth semistructured qualitative interviews. SETTING Interviews over the phone and in person. PARTICIPANTS Participants (N=18) included 10 young adults with a diagnosis of ABI (4 women, 6 men; age range, 19-21y) and 9 parents (8 women, 1 man) from the Greater Toronto Area, Ontario, Canada. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURE Semistructured interviews with participants. RESULTS Our findings highlight several commonalities and differences relative to sex and gender among young adults with ABI who are transitioning from pediatric to adult care. Both young adult men and women experienced a similar transition process and similar organization, continuity, and availability of care. Sex differences were found in relational factors (eg, communication, family involvement, social support). Young adult men, and parents of the men, differed in their transition regarding relational factors (eg, communication, family involvement). CONCLUSIONS Our findings show that young adult men and women with ABI who have taken part in a transition preparation program experience similarities in organization, continuity, and availability of care, but they experience differences in relational factors (eg, communication, family involvement).

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.

Health and Health Service Use of Youth and Young Adults with Intellectual and Developmental Disabilities

In this paper, we explore the health and health service use of youth and young adults with intellectual and developmental disabilities (IDD), with a focus on two specific subgroups: youth and young adults with Down syndrome and autism spectrum disorders. Young people with IDD are more likely to develop health problems (e.g., chronic disease and mental illness) than their peers without IDD as they age and require access to complex, coordinated care. The literature indicates that their patterns of health service use tend to shift from community and outpatient care in childhood toward more hospital-based, emergency, and long-term care in adulthood. We highlight some unique issues with respect to understanding the health and health service use of this population, and discuss the implications for health care practice, policy and planning, and further research.

Wellness Efforts for Autistic Women

Purpose of ReviewAlthough awareness of the substantial need for appropriate wellness efforts for adults with autism is growing, females with autism may have been under-identified in the past, and consequently, the research to date is largely based in a male-centric conceptualization of autism. The purpose of this narrative review was to ascertain what is known about wellness efforts for women with autism.Recent FindingsBeyond the shared challenges as experienced by autistic men, autistic women may have unique and differing social, physical, and psychological wellness needs; however, there remains limited research to date in many areas of lifespan wellness concerns.SummaryWe emphasize the need for future autism and disability research to acknowledge and account for potential sex and gender impact across areas of study. Further acknowledgement of sex and gender impact will play an important role in improving clinicians’ capacity to identify autism in girls and women, which is a foundational component of many wellness efforts.

Critical Analysis of a Population Mental Health Strategy: Effects on Stigma for People With Intellectual and Developmental Disabilities

ABSTRACT Introduction: Stigma is widely identified as an issue affecting the health and well-being of people with intellectual and developmental disabilities (IDD), and those with mental illnesses. To address this issue, a population mental health strategy, which includes a focus on reducing stigma and discrimination, was developed by the government of Ontario, Canada. Methods: Drawing on a critical policy analysis approach, we examined how stigma and mental illness are problematized and addressed in this strategy, and the implications for people with co-occurring IDD and mental illness. Results: Our analysis revealed that implicit understandings of exclusion, dependency, and inadequate economic participation have shaped how the explicitly identified issues of stigma and discrimination related to mental illness are problematized in the strategy. These implicit understandings have shaped courses of action (e.g., mental health promotion and anti-stigma programs) that may have positive consequences (e.g., skills for managing one’s own mental health, decreased discrimination related to mental illness), but may have unintended negative consequences (e.g., stigma of being different and doing different than people without IDD and/or mental illness, and not being able to support oneself). Conclusions: Acknowledging disability discrimination and emphasizing other ways of participating and being included in communities that are not predominantly focused on independence and productivity can potentially contribute to reducing the stigma experienced by people with concurrent IDD and mental illness, and improve their health and well-being.