Autistic sociality: challenging representations of autism and human-animal interactions.

PURPOSE: The objective of this synthesis research was to explore representations of autism and human-animal interactions (HAI) in the health sciences literature and the implications for autistic children and their families. METHODS: Guided by critical interpretive synthesis methods proposed by Dixon-Woods et al. (2006), we synthesized and examined how autism and HAI were described in the health sciences literature and explored assumptions and goals underlying HAI as an intervention. RESULTS: Across 47 reviewed articles, animals were represented as therapeutic objects whose purpose from a biomedical perspective was to address "problematic" behaviours and "deficits" in social functioning and development. HAI was employed as a therapy to address improvements in these problematic behaviours in the majority of studies. Relational and social aspects of HAI were present but not explicitly discussed. An alternative perspective proposed by Olga Solomon positioned autistic sociality as one form of diverse human socialities that can be embraced, rather than held problematic and in need of being normalized. CONCLUSIONS: Implications for HAI in rehabilitation include recognizing the multiple purposes of animals in a child's life, not only the therapeutic goal of normalizing functioning.

Animals can be considered agents that engage with humans and have multiple purposes in the lives of autistic children. Recognizing and valuing the types of relationships formed between children and animals as agents, each with social standing opens new areas of research and healthcare that can be explored.Future research can challenge medical autism discourses toward different ways of understanding social functioning as sociality.Rehabilitation can promote the rich experience that autistic children have with animals as valuable and beneficial in its own right, and not only for the therapeutic goal of normalizing social functioning.

Habituation for professional learning: a qualitative study of physiotherapy students' experiences working with anatomy cadavers.

INTRODUCTION: Cadaveric dissection shapes the ways in which healthcare students understand the human body and the attitudes, identities and behaviors they exhibit as health professionals. There is however a paucity of related research with physiotherapy (PT) students. PURPOSE: The purpose of this interpretivist study was to investigate PT students' conceptions of the human body in relation to experiences with human cadavers in anatomy education. METHODS: Ten semi-structured interviews were conducted with PT students along with four optional written reflections completed. Data was thematically analyzed. RESULTS: Students engaged in a continuous process of habituation involving oscillation between "humanization" and "dehumanization" of cadavers in the anatomy lab. We describe the contextual mediators that shaped the process, the multi-sensory and emotional experience of the students, and the "interruptions" that contributed to the variability in their conceptions over time and contexts. Students ultimately habituated toward dehumanization which had multiple effects on learning and professionalization. CONCLUSION: Study findings highlight the complexity of PT students' experiences and learning within the cadaver lab outside of the formal goals of anatomy education. We discuss the implications for anatomy curricula, including the potential advantages of incorporating a biopsychosocial approach.

The Sensory Experience of Waiting for Parents of Children Awaiting Transplant: A Narrative Ethnography.

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents' experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents' bodies stored sense memories, and they re-experienced stories of waiting through the senses and 'felt realities'. In addition, the senses transported families back to the emotional experience of waiting, which highlighted the longevity of waiting after receiving a transplant. We discuss how the senses provide important information about the body, waiting experiences, and the environmental contexts that mediate waiting. Findings contribute to theoretical and methodological work exploring how bodies are implicated in producing narratives.

The civil rights of disabled children in physiotherapy practices.

PURPOSE: This study aimed to explore the experiences of civil rights of disabled children receiving physiotherapy in New Zealand. As yet there is limited attention given to this topic in rehabilitation literature. METHODS: We conducted a qualitative study that drew on the fields of childhood studies and disability studies to address the study aim. Seven disabled children who used local physiotherapy services (aged between four and 14 years) were interviewed using child-centered methods. In addition, their parents were interviewed individually, and eight rehabilitation professionals and disability advocates took part in a focus group discussion. Interpretive thematic analysis was used to analyze findings. FINDINGS: The participating disabled children all appreciated being informed about physiotherapy, but had individual preferences regarding involvement in decision making. They described positive and negative influences on their experiences, but indicated they may not have been asked by adults about these. Parents, professionals and advocates described that attempting to promote a positive experience for children is constrained by understandings regarding the purposes and practices of physiotherapy. CONCLUSIONS: Our findings suggest it is important to get an understanding of individual children's views and preferences regarding physiotherapy in order to promote opportunities for choice, control and satisfaction. In this way physiotherapists can ensure disabled children's civil rights are realized in practice.

What is 'disability'? Exploring the conceptions of internationally educated learners in a Canadian physical therapy bridging program.

BACKGROUND: Physiotherapists' understanding of disability has direct relevance for their practices and work with disabled people. PURPOSE: To explore how physiotherapists from diverse backgrounds, cultures and social locations conceptualize disability. Understanding their conceptualizations will provide insight to determine future directions regarding disability education, in healthcare education, to optimize the quality of care and life for individuals with disabilities. METHODS: Six internationally educated physiotherapists enrolled in a Canadian physical therapy bridging program were interviewed and data were analyzed for themes. RESULTS: Participants' conceptualizations of disability were complex and a dynamic process that reflected what was 'thinkable' in relation to experience, such as with social location and in personal, professional and educational domains. This primary theme was reflected in three subthemes: 1) Professional PT acculturation shaped disability conceptualization in particular ways; 2) Medical model as the dominant way of thinking; and 3) Social model thinking was more feasible in resource rich contexts. CONCLUSION: These results reinforce the benefits of a wide exposure to different ways of conceptualizing and addressing disability within PT education to counter the dominance of the medical model and reinforce the importance of advocacy and allyship with disabled people.

Enhancing human aspects of care with young people with muscular dystrophy: An evaluation of a participatory qualitative study with clinicians.

PURPOSE: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: Overall, this intervention was able to shift clinic practices, and could feasibly be adapted across rehabilitation settings.

Enacting objects and subjects in a children's rehabilitation clinic: Default and shifting ontological politics of muscular dystrophy care.

In health care clinics, problems are constructed through interactions, a choreography of human and non-human actors together enacting matters of concern. Studying the ways in which a body, person, family, or environment is objectified for clinical purposes opens discussion about advantages and disadvantages of different objectification practices, and exploration of creative ways to handle the diversity and tensions that exist. In this analysis, we explored objectifications in a Canadian neuromuscular clinic with young people with muscular dystrophy. This involved a close examination of clinical objectification practices across a series of 27 observed appointments. We identified the routinised clinical assessments, and argue these embed a default orientation to how to intervene in people's lives. In this setting, the routine focused on meeting demands of daily activities while protecting the at-risk-body, and working toward an abstract sense of an independent future for the person/body with muscular dystrophy. But the default could be disrupted; through our analysis of the routine and disruptions, we highlight how contesting visions for the present and future were consequential in ways that might be more than what is anticipated within rehabilitation practice.

Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorder.

Purpose: How autism spectrum disorder (ASD) is understood (i.e., as a medical problem or natural human variation) has profound implications for how healthcare services are designed and delivered. As the recipients of these services, children and families are highly invested in these debates, yet little research has sought to investigate their views. The purpose of this study was to explore parents' conceptualizations of ASD in relation to disability, and how they align with, or diverge from, conceptualizations they encounter within healthcare.Materials and methods: Nine semi-structured qualitative interviews were conducted with parents of children with ASD and thematically analyzed.Results: The accounts suggested that participants integrated multiple and sometimes contradictory conceptualizations of disability that reflected both "medical" and "social" models and sources of disablement. While the participants often advocated for acceptance and inclusion of their child, the label of "neurodiversity" was commonly rejected due to the concern for potential loss of funding for services.Conclusions: Study findings highlight the relationship between how parents conceptualize ASD and their experiences accessing supportive services within current delivery structures. Implications for ASD service providers emphasize accommodating parents' unique and evolving values and priorities for healthcare and their relation to current service systems.Implications for RehabilitationParents conceptualizations of ASD both inform and are influenced by their experiences of accessing supportive services.This study highlights that parents' perspectives are fluid, context-dependent, and do not exclusively represent a single model or perspective of disability.To meet family needs, service providers including healthcare professionals must recognize parents' unique understandings of their child's ASD and appreciate how healthcare shapes these perceptions.

A posthuman decentring of person-centred care.

In this paper, we examine person-centred care through a Deleuzian posthuman lens with the aim of exploring what becomes possible when the concepts of both person and care are de-centred. We do so through a consideration of the sets of relations that produce 'the client' in health care contexts. Our analysis maps particular entangled material-semiotic forces producing 'M/michael', a young man with a diagnosis of Duchenne muscular dystrophy, within a rehabilitation clinic. Drawing on Deleuzian notions of assemblage, affect, and becoming we explore 'person-care' as an active production that dynamically enacts persons-as-clients through clinical arrangements. Persons are thus reconceptualised in terms of locally produced subject positions and their care relations, rather than pre-existing beings who can be 'centred' within health services. Paradoxically, by de-centring persons and care, we work to conjure ways to strengthen the aspirations of person centredness to humanise health practices. In doing so, we consider different possibilities for re-imagining clinical work and contribute to debates regarding how healthcare conceptualises and addresses disability, health, and wellbeing. We suggest that such posthuman analyses can open up new ways of understanding and re/forming healthcare.

Seriously Foolish and Foolishly Serious: The Art and Practice of Clowning in Children's Rehabilitation.

This paper interrogates and reclaims clown practices in children's rehabilitation as 'foolish.' Attempts to legitimize and 'take seriously' clown practices in the health sciences frame the work of clowns as secondary to the 'real' work of medical professionals and diminish the ways clowns support emotional vulnerability and bravery with a willingness to fail and be ridiculous as fundamental to their work. Narrow conceptualizations of clown practices in hospitals as only happy and funny overlook the ways clowns also routinely engage with sadness, despair, discomfort and many other ways of being and doing. Our exploration of clown practices as foolish exposes the ways children's rehabilitation upholds particular neoliberal models of success and invites a re-centring of rehabilitation and health care research and practice towards relationship building, supporting meaningful projects and a continued nurturing of aesthetic and pleasurable ways of being-in-the-world in the present moment as valuable unto themselves.

Physical activity participation among adolescents with autism spectrum disorder.

LAY ABSTRACT: Adolescents with autism spectrum disorder are less likely to be physically active compared to their age-related peers. Despite the lower levels of physical activity observed among adolescents with autism spectrum disorder, it is unknown why they are predominantly inactive. Much of the research so far has focused on understanding how biological aspects influence physical activity participation. But there is little research that has examined how social and cultural components influence their physical activity participation. There is also little research that has sought the perspectives and experiences of adolescents with autism spectrum disorder. In this study, 10 adolescent boys with autism spectrum disorder created a digital story, and also participated in two face-to-face interviews. The purpose of the study was to examine how individual, social, and cultural forces influenced physical activity participation. Analysis of the data highlight that bullying, challenges in community programs, and the prioritization of therapeutic interventions limited participation. On the contrary, participants were more likely to be active when physical activity generated meaning, purpose, a sense of identity, and affective pleasures. The findings add new knowledge suggesting that adolescents with autism spectrum disorder are not simply unmotivated. Rather, physical activity participation was shaped by wider social experiences, norms, values, and practices in which they were immersed. The findings suggest a need for directed efforts to create policies and practices which are individualized and reflective of the needs and abilities of adolescents with autism spectrum disorder to promote physical activity participation and potentially enhance physical health and wellbeing.

People with Disabilities and Other Forms of Vulnerability to the COVID-19 Pandemic: Study Protocol for a Scoping Review and Thematic Analysis.

OBJECTIVES: To develop a protocol for a scoping review mapping as well as thematically analyzing the literature on the effect of, and responses to, the coronavirus disease 2019 (COVID-19) pandemic, focused on people with disabilities with other layers of individual vulnerability or social disadvantage. METHODS: We will search scientific databases (Medline/PubMed, Web of Science, Scopus, AgeLine, PsycINFO, CINAHL, ERIC) and preprint servers (MedRxiv, SocArXiv, PsyArXiv). Google searches, snowballing, and key-informant strategies were also used, including a focus on the gray literature (eg, official reports). Peer-reviewed and preprint publications will be covered in 6 languages, and the gray literature in English. Publications will be included if they address individuals with disabilities; the COVID-19 pandemic or subsequent socioeconomic or occupational effects; and individual or social vulnerabilities, including any form of discrimination, marginalization, or social disadvantage. Two independent reviewers will perform eligibility decisions and key data extractions. Beyond mapping the literature, the results will thematically analyze any disproportionate risks people with disabilities and other forms of vulnerability experience in terms of being infected by COVID-19, having severe health consequences, and facing negative socioeconomic effects. Actions taken or recommended to reduce identified inequalities will also be synthesized. Our entire research team, with diverse backgrounds, will be involved in the synthesis. CONCLUSIONS: This review, which we plan to expedite, aims to inform policy makers, health authorities, disability advocates, and other stakeholders regarding the needs and ways to promote equity and disability-inclusive responses to the COVID-19 pandemic and the resultant socioeconomic shockwaves.

Interrogating inclusion with youths who use augmentative and alternative communication.

Even as the goal of social inclusion underpins health and social services for disabled youths, those with communication impairments continue to lead narrowly circumscribed lives. In this Canadian study, we combined visual methods and interviews with 13 Canadian youths who use augmentative and alternative communication (AAC) to understand how they make 'practical sense' of discourses of inclusion. Drawing on Bourdieu's theory of practice, we suggest: (i) participants' narratives reveal habitus - a socially constituted set of dispositions - that predispose them to accommodate the devalued social positions and constricted conditions of existence imposed on them; (ii) some forms of 'inclusion' perpetuate symbolic violence, as youths who use AAC internalise, as seemingly 'natural', dominant social norms and values that privilege 'normal' bodies; and (iii) although their practices primarily reproduced the status quo, youths in the study also worked at the margins to create locally produced forms of inclusion that attempted to transform the 'rules of the game'. We argue these results suggest a need for systemic shifts past reified notions of inclusion towards fostering social spaces where alternative ways of being in the world are positively valued.

Resisting governance and the production of trust in early psychosis intervention.

Trust is vital in mental healthcare where uncertainty and risk prevail and where relationship building is central to effective service delivery. Despite its significance, research on trust, particularly among multi-disciplinary healthcare teams and between service providers and users is limited and explored only tangentially within early psychosis intervention (EPI) programs. An institutional ethnographic approach is used to examine how trust within an EPI setting is produced and operates. Drawing on participant observation, textual analysis of clinic documents and in-depth interviews with 27 participants (staff, young people and family members), our analysis outlines how the clinic manager's and staff's resistance to hospital rulings that impeded EPI policy principles were part of the extended sequence of activities that produced trust. These acts of resistance, alongside the clinic manager's reflective leadership practices, cultivated spaces for staff to take risks, share their ideas and build consensus - culminating in staff-designed protocols that produced trust among one another, and between service providers and young people and their families. Drawing from Brown and Calnan's framework of "vicious" and "virtuous" cycles of (dis)trust, we highlight how management and staff responses to vulnerability and uncertainty generated trust through their communication practices and knowledge sharing. We also suggest that protocols to manage the risk of medication non-adherence and treatment dis-engagement among young people contained regulatory functions, pointing to the complex interplay of trust, control and risk. Study implications suggest shifting the emphasis from risk management and quality governance as an organizing framework in mental health to a framework based on trust.

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

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.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 person-centered 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.

Exploring the Role of Physiotherapists in the Care of Children with Autism Spectrum Disorder.

Aims: Children with autism spectrum disorder (ASD) are less likely to participate in physical activity than their age related peers, and it has been suggested that physiotherapists (PT) could potentially facilitate their participation. Currently, no research has examined PTs' potential role in enhancing physical activity (PA) participation. The purpose of this qualitative study was to examine PTs experiences and perspectives of working with children with ASD, and to explore potential directions for PTs to potentially increase PA. Methods: Ten pediatric PTs in Canada were interviewed, and data were analyzed using thematic analysis. Results: Three themes were identified: the role of PT, perceived lack of expertise, confidence and training, and structural and systemic barriers. The accounts highlight the social and institutional complexity and constraints in PTs potential promotion of PA for children with ASD. Participants supported a primarily consultative role whereby PTs could educate and partner with parents, teachers, and community service providers to enhance gross motor development and individualize PA needs. Conclusions: These findings indicate how PTs might be involved in enhancing PA among children with ASD.

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

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.

Engaging older adults in discharge planning: case studies illuminating approaches adopted by family members that promote relational autonomy.

Background: Discharge decisions have significant implications for older adults and their involved family members. Evidence of older adult and family members' engagement in discharge decision-making, however, varies widely. Some recent work shows assumed associations between ageing, diminished participation in healthcare decision-making and increased reliance on family members. Other research suggests that family members adopt strategies to promote older adults' participation in decision-making. Relational autonomy theory suggests that individuals have differing levels of autonomy and that individuals' agency can be supported (or marginalized) by others.Purpose: Using three case studies, we examine traditional and relational conceptions of autonomy and explore how relational approaches could inform healthcare practice.Methods: Taking a critical feminist bioethics perspective, we present a secondary analysis of three microethnographic case studies focused on discharge planning with older adults in one Canadian inpatient rehabilitation setting. The data consist of observations of discharge planning family conferences and semi-structured interviews with older adults and family members.Results: Tensions between older adults' wishes to return home and their diminished participation in discharge decisions, and family members' assumption of a primary role in discharge decision-making and their wish for the older adult to move to a supported setting were apparent. To reconcile these tensions, the older adults' family members in these cases employed strategies to promote older adults' participation in decision-making that were consistent with relational autonomy theory.Conclusion and implications for practice: The analysis suggests that older adults' participation in discharge decision-making processes could be better promoted through relational approaches.Implications for rehabilitation • Adopting an approach guided by relational autonomy might better enable patients to participate in decision-making than would an approach guided by traditional conceptions of autonomy. • Rehabilitation professionals could seek assistance from family members and guide them toward collaborative partnerships. • A range of strategies may be employed to customize relational approaches to enhance autonomy: • having several different conversations with patients to enable multiple chances to contribute knowledge and views; • involving family members or taking the time to explain information several different times and in diverse manners; • showing patients videos or photos of discharge locations; • exploring a breadth of potential discharge options; • accompanying patients to visit different options in person; and • getting patients in touch with individuals who have made similar choices. • It is recognized that taking a relational approach might be time-consuming and that practice contexts may not be conducive to such practice.

Adolescent Males' Understanding of Infertility as a Long-Term Effect of Cancer Therapy.

Cancer therapy can result in infertility in childhood cancer survivors; however, little is known about how young adolescent males make sense of infertility and potential future parenthood. What's more, research shows that many healthcare professionals in Canada do not discuss fertility preservation (FP) with this vulnerable population. This study examines how male adolescent childhood cancer survivors understand infertility as a long-term effect of cancer treatments. We used a narrative analysis to examine 16 interviews with 14-18-year-old males. The findings from this research illustrate that FP discussions may raise meaningful questions for young men about how they see themselves and construct their identities. The findings also demonstrate that young men's beliefs about FP may be informed by family narratives, and it shows that biological parenthood may be important to adolescent males.

Beyond bare bones: critical, theoretically engaged qualitative research in public health.

While qualitative inquiry has been a part of the Canadian Journal of Public Health (CJPH) for many years, CJPH does not yet have the reputation as a home for qualitative research that has a critical focus and that is cqqqonversant with contemporary developments in social theory and qualitative methodology. This paper describes efforts to establish CJPH as a welcoming home for critical, theoretically engaged qualitative research in public health. The paper introduces the Special Section that heralds the forward vision for qualitative research at CJPH. We specify what we mean by critical, theoretically engaged qualitative research and make the case for its significance for public health research and practice. We describe changes made in how qualitative manuscript submissions are handled at CJPH and highlight the contribution to public health scholarship made by the articles that comprise the Special Section. We issue an invitation to the public health community to support and participate in our vision to enhance critical, theoretically informed qualitative research in public health.