Transforming normative, ableist, and biomedical orientations to living well and quality of life in nursing: Reimagining what a ventilated body can do.

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18-40 years) living with HMV. Data were co-constructed virtually through an initial interview and photo-elicitation using participant-generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently.

Challenges in Measuring Healthcare Transition Readiness: Taking Stock and Looking Forward.

THEORETICAL PRINCIPLES: The construct of transition readiness has become commonplace in healthcare transition (HCT) research, yet conceptualization of this construct is rarely considered. Given the centrality of construct conceptualization in measure development and validity theory, analysis of measurement implications of conceptualizations of transition readiness is essential. PHENOMENON ADDRESSED: The purpose of this paper is to provide a review and critical analysis of transition readiness measurement through the lens of construct conceptualization and its implications for validation and healthcare transition research. RESEARCH LINKAGES: Drawing on contemporary validity theory, theoretical discussions of construct conceptualization from management studies, and transition readiness measurement research, this paper will explore how transition readiness has been conceptualized and operationalized in HCT research and articulate problems, challenges and gaps relevant to transition readiness. There remains a lack of consensus on what transition readiness is or should be and careful attention to the implications of elements of conceptual definitions are essential to move the field of transition readiness measurement forward. Recommendations for future work in the field in relation to conceptual clarity, the implications of multidimensionality, change over time, and consequences of measurement are suggested.

Composing adult lives with a ventilator at the intersection of developmental and neoliberal discourses of time.

This paper explores temporalities and experiences of time drawn from an analysis of interview data from a critical narrative inquiry of the experiences of young adults living with home mechanical ventilation (HMV). The analysis centers the ideological effects of dominant discourses that shape understandings of time in the Euro-Western world and the ways in which young adults' stories prompt a rethinking of time in health research and praxis. Data generation involved interviews and photo-elicitation with five young adults (ages 18-40). A critical narrative analysis of participants' stories surfaced the influence of ableist, developmentalist, and neoliberal discourses of time and the creative resistance that points to the potential of crip orientations to time in opening up possibilities for living. Implications for practice and research are offered.

The potential contribution of critical theories in healthcare transition research and practice.

BACKGROUND: Healthcare transition has been established as a significant topic of interest in pediatric rehabilitation. Healthcare transition research has primarily focused on barriers to self-management and achievement of a productive adulthood. Healthcare transition experts have recently called for further attention to social structural factors. Theoretical approaches are, therefore, needed to account for how such factors shape the lives of youth with disabilities, particularly those who experience marginalization and social exclusion. PURPOSE: Taking up this call, the aim of this paper is to examine the potential contributions of two critical theories to healthcare transition research and practice. METHODS: Review two theories - intersectionality and critical discourse analysis. RESULTS: Intersectionality highlights how multiple intersecting social locations and social structures interact with youth's experiences, choices and health care needs. Critical discourse analysis focuses on how discourses and assumptions in healthcare transition research and practice contribute to marginalization and can be resisted and changed by youth, families, researchers, and clinicians. CONCLUSIONS: The uptake of critical theories within health care transition research and practice can account for the complex interplay of social structures, power relations and youth's experiences. Such analysis can contribute to refining assessments and developing interventions that reflect how marginalization and exclusion impact youth's well-being.IMPLICATIONS FOR REHABILITATIONWhile critical theories have been applied in health and rehabilitation, there has been limited uptake of these theories in healthcare transition research and practice.Critical theories can promote awareness of how youth's experiences, choices and actions throughout the healthcare transition process are shaping and shaped by structural factors and assumptions about a productive adulthood.Applying critical theories in healthcare transition practice involves being responsive to the structural factors that may be shaping youth's experiences, choices and opportunities.Intersectional and critical discourse analyses can surface how to reduce social exclusion and marginalization for youth transitioning to adulthood through analyses of language, power, dominant discourse and practices amenable to change.