'A taste of my life' ... altered eating and sjӧgren’s syndrome: a participant-led exploration of eating experience using application of a novel methodology, 'food play'

Cartner, Helen (2024) 'A taste of my life' ... altered eating and sjӧgren’s syndrome: a participant-led exploration of eating experience using application of a novel methodology, 'food play'. Doctoral thesis, Northumbria University.

Text (Doctoral thesis) cartner.helen_phd(14027512).pdf - Submitted Version Restricted to Repository staff only until 25 October 2024. Download (4MB) | Request a copy

Abstract

Background. Sjögren’s syndrome is a complex debilitating autoimmune condition presenting with dry eyes and mouth, chronic fatigue, pain, sleep disturbances and other systemic involvement – all of which have a detrimental effect on daily living, function and participation. Sjögren’s is known to impact on eating experience, and disrupted eating in general is known to impact on daily living across biopsychosocial domains. However, this is sparsely represented in Sjögren’s research and there is limited non-pharmacological support for this condition.

Aim. To explore eating experience and related quality of life for people with Sjögren’s syndrome as an early stage in developing a complex psychosocial intervention package to address this.

Methods. A participant-led exploratory research programme was conducted comprising a narrative literature review and an extensive qualitative study involving seven researchers, n=14 adult Sjögren’s participants (n=1 male) and n=1 adult male carer. Thematic analysis of focus groups and individual interviews was followed by application of the novel food play methodology. This comprised three interactive food experimentation workshops alternating with three follow up focus groups with concurrent analysis using grounded theory and ethnography methods. PPI was embedded from the outset and throughout.

Results. Eating experience was both individual and relational and was inextricably connected to Sjögren’s lived experience. Disrupted eating was a manifestation of Sjögren’s but also underpinned the participants’ constructions and understandings of their condition. Living and eating with Sjögren’s syndrome were characterised by work: daily project management, self and social identity management, sense-making and adjustment to biographical disruption caused by the condition. These work domains were mapped alongside the biopsychosocial dimensions of disrupted eating to generate an integrated conceptual framework.

Conclusion. An integrated understanding of eating and Sjögren’s lived experience informs intervention development and allows for multi-stakeholder involvement through identifying a range of user-led potential intervention points, priorities, targets, processes and outcomes.

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