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Conceptualisations of Movement (and Movement Loss) in New Zealand Adults Living with Spinal Muscular Atrophy: A Critical Analysis

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Date

2024

Authors

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Waterworth, Kate
Fadyl, Joanna

Item type

Thesis

Degree name

Master of Health Science

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Auckland University of Technology

Abstract

Spinal Muscular Atrophy (SMA) is a neurogenetic condition that causes progressive muscle weakness. From 2016, new pharmaceuticals to treat the condition have reformed prognostic outlooks for children and adults living with SMA, however, this shift has also resulted in new challenges. In 2022 and 2023, Pharmac (New Zealand’s drug funding agency) approved funding for children under 18 to access Spinraza (Nusinersen) and Risdiplam (Evrysidi) respectively. However, New Zealand adults with SMA currently remain without access. While the lack of equity in treatment access is concerning, these pharmaceuticals are not curative. Empirical evidence has shown treatments to provide only modest benefits in adults, and it has been questioned whether treatments result in increased subjective well-being or quality of life. While adults with SMA live with significant physical limitations largely attributed to genetics, functional decline is often multifactorial, with modifiable factors such as disuse atrophy, contractures and comorbidities also contributing to movement loss. Adults with SMA also experience reduced psychosocial well-being, social stigma and challenges in integrating into and participating in mainstream society. Such findings highlight the necessity to look beyond bodily limitations to support well-being in SMA. The purpose of this study was to explore how NZ adults living with SMA conceptualise Movement and Movement Loss and to consider how these constructions are impacted by interactions in healthcare and broader society. By increasing awareness of social constructions of Movement, the intent was to generate discussion about the impact of language and discourse on disease experience and well-being. This research involved ten, 90-minute semi-structured interviews with NZ adults living with SMA. Data generation and analysis were completed using Braun and Clarke’s six-step method for reflexive thematic analysis and applied social constructivist epistemology informed by critical disability and critical rehabilitation scholarship. The analysis resulted in a framework detailing the ways in which adults with SMA conceptualised Movement and Movement Loss, and identified three broad themes: ‘Movement matters’, ‘Movement is being and doing’, and ‘Movement is transformation’. Participants conceptualised Movement in ways that reflected the influence of biomedical discourse in health contexts. Social-political discourses expressed more broadly in society, including ableism and neoliberalism were also found to be influential. Interestingly, participants and close others often acted in ways to resist dominant discourses about Movement and Movement Loss. In doing so, participants were able to intentionally reclaim Movement, and move towards understandings of Movement that supported wellbeing. In the discussion, I consider how the study findings relate to current qualitative literature from the adult SMA community and draw on critical scholarship to highlight the importance of addressing language, discourse in health, and broader society to support the well-being of those living with SMA. Finally, I consider avenues for change and share a personal reflection on the impact of this research as an insider to this community.

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http://hdl.handle.net/10292/18883

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Masters Theses