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.

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.

Program opportunities of residential immersive life skills programs for youth with disabilities.

PURPOSE: Residential immersive life skills programs provide youth with the skills and outlooks needed to adopt new roles in life. Observed program opportunities and service providers' perceptions of opportunities were examined to determine program fidelity. Service providers' views of how the programs work were also examined. METHOD: 107 activity settings were observed across two summers at three programs, with opportunities assessed using the Measure of Environmental Qualities of Activity Settings (MEQAS-48). Activity settings were classified by session format (instructional versus experiential) and activity type (active physical, skill-based, self-improvement). Qualitative interviews were held with seven service providers. RESULTS: Service providers indicated the importance of life-preparatory learning opportunities for social interaction, choice, and skill development, which aligned with high observed MEQAS-48 opportunities for social interaction, choice in experiential session formats, and personal growth. Providers individualized program delivery to provide youth with personally meaningful and challenging experiences. Providers also discussed emergent, transformational outcomes, including enhanced awareness of strengths, enhanced confidence in skills, identity development, and greater awareness of future life possibilities. CONCLUSIONS: The study provided evidence of program fidelity, along with robust evidence for program opportunities as an active ingredient that may be transferable to the design and delivery of other transition-support programs.