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UBC Theses and Dissertations

Living as a young person with home mechanical ventilation : a critical narrative inquiry Straus, Elizabeth Martha May


A goal of living as well as possible is central to practice and research with individuals living with home mechanical ventilation (HMV); however, what it means to live well for young people living with HMV has received little attention in the literature. Without these young people’s perspectives, there is a risk that normative assumptions about living well and quality of life could be taken up in ways that could contribute their marginalization. Research is needed that critically examines taken-for-granted assumptions and discourses in relation to the experiences of young people living with HMV and expands knowledge and understandings of living well. The purpose of this critical narrative inquiry was to inquire into living well with young people living with HMV through exploring their experiences. Five young people (ages 18-40 years) participated in this study in the midst of the COVID-19 pandemic. Data was co-constructed with young people virtually using Zoom in two phases: (1) an initial interview; and (2) photo-elicitation using participant-generated photographs. Data consisted of 11 hours of recordings, 72 photographs, and field notes. A critical narrative approach was used to analyze individual participant stories and construct a discursive reading of their collective stories. The study’s findings are presented in two chapters: the first details the narrative accounts of my interpretations of each participant’s narratives, making visible the complexities of how participants composed their lives, what was important to them, and how social contexts influenced their experiences. The second presents a discursive analysis of participants’ collective stories to surface the ideological effects of ableist, biomedical, neoliberal and developmentalist discourses that influence participants’ experiences, and how those effects materialize in social structures and built environments that support or constrain opportunities to live well. The discursive analysis also details how participants reproduced, resisted, and/or reconstituted these dominant discourses. The findings open up possibilities for reimagining living well and seeing bodies, technologies, function, and disability differently. Recommendations include strategies for nursing and healthcare praxis and education to enhance young people’s opportunities to live well with HMV, priority areas for policy advocacy, and for future research with this population.

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