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.

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.

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.

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.

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.

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

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.

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.

"You gotta try it all": Parents' Experiences with Robotic Gait Training for their Children with Cerebral Palsy.

AIMS: Innovative robotic technologies hold strong promise for improving walking abilities of children with cerebral palsy (CP), but may create expectations for parents pursuing the "newest thing" in treatment. The aim of this qualitative study was to explore parents' values about walking in relation to their experiences with robotic gait training for their children. METHODS: Semi-structured interviews were conducted with parents of five ambulatory children with CP participating in a randomized trial investigating robotic gait training effectiveness. RESULTS: Parents valued walking, especially "correct" walking, as a key component of their children's present and future well-being. They continually sought the "next best thing" in therapy and viewed the robotic gait trainer as a potentially revolutionary technology despite mixed experiences. CONCLUSIONS: The results can help inform rehabilitation therapists' knowledge of parents' values and perspectives, and guide effective collaborations toward meeting the therapeutic needs of children with CP.

The 'placement' of people with profound impairments across the lifespan: re-thinking age criteria.

BACKGROUND: Advances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood. Questions regarding how and where they should live are discussed rarely and, when they are, primarily focus on safety and/or containing costs. Since models of long-term care provision are age-based, children who reside in institutions are 'discharged' to adult facilities when they reach an arbitrary age. Such transfers may not be in the best interests of these young people or their families. Our aim in this debate is to highlight why age is a problematic criterion for placement decisions, with the goal of stimulating further research and inquiry. DISCUSSION: Transfers from pediatric to adult institutions are driven primarily by funding arrangements and underpinned by stage-based theories of human development. Arguments supporting such transfers point to the value of communal living with same age peers, and engagement in age-appropriate activities. These goals are questionable for individuals who are minimally interactive and/or where equally worthy interactions are feasible in intergenerational settings. Instead their accommodation needs might more closely align with palliative care principles of supporting individuals and families to enjoy what they bring to each other's lives and minimize suffering. Innovative models of 'vertical care' and 'lifetime homes', which enable continuous flexible services across the lifespan, are discussed as examples of alternative approaches requiring further debate and research. SUMMARY: Entrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families. Questions of what constitutes a 'good life' for these individuals are tenacious and require further thought and research. Nevertheless, they need to be regarded as citizens of our human community deserving of a good life in whatever form that may take, in settings that enable them to flourish.

'Communicative competence' in the field of augmentative and alternative communication: a review and critique.

BACKGROUND: Understandings of 'communicative competency' (CC) have an important influence on the ways that researchers and practitioners in augmentative and alternative communication (AAC) work toward achieving positive outcomes with AAC users. Yet, very little literature has critically examined conceptualizations of CC in AAC. Following an overview of the emergence of the concept of CC and of the field of AAC, we review seven conceptualizations of CC identified in the literature. AIMS: To consider the contributions and potential shortcomings of conceptualizations of CC in AAC. METHODS & PROCEDURES: We use a critical theoretical approach to review, critique and synthesize conceptualizations of CC in AAC, with a particular focus on uncovering 'taken for granted' assumptions. By historically situating the reviewed literature, we examine the shifting boundaries and tensions among theoretical conceptualizations of CC in AAC and their potential impacts on practice. MAIN CONTRIBUTIONS: We suggest ways that revisiting past scholarly work, alongside emergent, innovative conceptualizations of CC might shift ways of thinking about CC in AAC which tend to focus on the individual who communicates differently, toward (re)location of CC as a shared, socially incorporated and performed communication construct. CONCLUSION & IMPLICATIONS: We propose that emerging critical perspectives drawn from AAC and other interdisciplinary literatures offer innovative ways of theorizing communication difference, which might inform evolving conceptualizations of CC in AAC.

Balancing Hope and Realism in Family-Centered Care: Physical Therapists' Dilemmas in Negotiating Walking Goals with Parents of Children with Cerebral Palsy.

ABSTRACT The aims of this study were to explore physical therapists' beliefs about the value of walking for children with cerebral palsy (CP), how these beliefs inform therapy choices, and to describe how physical therapists engage families in decision-making regarding walking goals. Eight physical therapists who had experience working with children with CP each participated in a qualitative, one-to-one interview exploring their walking-related values, beliefs, and decision-making practices. The physical therapists' accounts demonstrated that they balanced their beliefs and professional expertise with families' goals in order to preserve families' hopes and maintain rapport, while also ensuring evidence-based and efficacious treatment plans were implemented. Participants experienced internal conflict when attempting to balance the principles of family-centered care with their personal beliefs and expertise. Further research will augment these findings and contribute to ongoing debates regarding rehabilitation best practices and family-centered care.

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.

Children and youth with disabilities: innovative methods for single qualitative interviews.

There is a paucity of explicit literature outlining methods for single-interview studies with children, and almost none have focused on engaging children with disabilities. Drawing from a pilot study, we address these gaps by describing innovative techniques, strategies, and methods for engaging children and youth with disabilities in a single qualitative interview. In the study, we explored the beliefs, assumptions, and experiences of children and youth with cerebral palsy and their parents regarding the importance of walking. We describe three key aspects of our child-interview methodological approach: collaboration with parents, a toolkit of customizable interview techniques, and strategies to consider the power differential inherent in child-researcher interactions. Examples from our research illustrate what worked well and what was less successful. Researchers can optimize single interviews with children with disabilities by collaborating with family members and by preparing a toolkit of customizable interview techniques.

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.

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.

Feasibility of improving the motor development of toddlers with congenital heart defects using a home-based intervention.

This study investigated the feasibility of administering motor assessments, delivering rehabilitation via parent-led activities, and enhancing motor function in children with complex congenital heart defects. Gross and fine motor development were evaluated in 20 toddlers ages 12 to 26 months after either a superior cavopulmonary connection (SCPC) procedure or an arterial switch operation (ASO) using the Peabody developmental scale, version 2 (PDMS-2). Feasibility of assessment and program delivery were examined using open-ended interviews with parents. The ASO group scored consistently higher than the SCPC group in every subscore of the PDMS-2 (ASO gross motor quotient, 96.78 ± 7.396 vs SCPC gross motor quotient, 77.56 ± 7.715 [P < 0.001]; ASO fine motor quotient, 101.20 ± 6.512 versus SCPC fine motor quotient, 87.70 ± 9.945 [P = 0.002]; ASO total motor quotient, 98.78 ± 6.515 versus SCPC total motor quotient, 79.56 ± 8.095 [P < 0.001]). A lower total motor quotient was associated with the use of anticoagulant medication (-20.3 ± 4.6; P < 0.001), longer and more frequent hospital stays (respectively, -3.6 ± 1 .4; P = 0.01 and -0.8 ± 0.4; P = 0.02), and shorter times between the most recent surgery and the assessment date (2.1 ± 0.5; P < 0.001). Age-standardized scores were constant between baseline and follow-up evaluation (baseline gross motor quotient, 87 ± 12 vs. post-intervention gross motor quotient, 88 ± 15 [P = 0.89]; baseline fine motor quotient, 94 ± 11 vs. post-intervention fine motor quotient, 94 ± 12 [P = 0.55]; baseline total motor quotient, 89 ± 12 vs. post-intervention total motor quotient, 90 ± 14 [P = 0.89]), indicating achievement of the expected rate of development. The most common barrier to home activity completion was illness in the SCPC group and lack of interest in the ASO group. Providing enjoyable activities and incorporating the activities into the participants' schedules were keys to compliance. All the children were able to complete the assessments, and the parents reported a positive impact of the intervention on family life. Children who have had the SCPC procedure experience significant motor delays early in life. However, toddlers after ASO have age-appropriate motor skills. Completion of the rehabilitation program enables post-SCPC children to increase their rate of development to age-appropriate norms.

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.

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.

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.

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.