Preserving a sense of self: young people’s experiences living with food allergy
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Abstract
Young people with food allergies live with the unpredictable risk of anaphylaxis, which creates a considerable burden including stigma, marginalization, and constant vigilance. We currently lack the knowledge to fully understand ideal management and health needs from the perspective of young people living with food allergy. The purpose of this study was to explore young people’s lived experience of food allergy and analyze its assigned meaning with the intent to inform allergy management and policy. Ten Canadian youth between the ages of 13 to 21 years old with a diagnosis of food-induced anaphylaxis participated in two semi-structured interviews, the first with a focus on lived experience through a phenomenological lens, and the second using photovoice. A focus group helped to provide feedback on early analysis and recommendations. This study used a novel approach in combining van Manen’s phenomenology of practice with photovoice to guide collection and analysis of the resulting data. Analysis used van Manen’s existentials to develop the following subsequent themes: the altered self, home is a safe place, in my shoes, living with possibilities, and the invisible barrier. The resultant overarching theme, preserving a sense of self, concerns how young people living with food allergies must create a sense of holistic safety to maintain their identities. This safety is necessary in the face of perceived limitations and threats experienced as a result of their food allergies. Findings from this study contribute new knowledge of young people’s experiences and assigned meaning when living with food allergy. This study provides new opportunities to expand future food allergy research, policy, education, and clinical practice concerning young people and their health needs.