Britt Egmose

Aim: To explore how youth understand and manage risk associated with food allergy in everyday life, aiming to inform future advanced nursing and care initiatives.Design: Qualitative study based on critical psychological practice research.Methods: Data was generated through participant observation and informal interviews during a 2‐day camp with youth aged 18–23years (n = 10), diagnosed with food allergy in childhood. Data analysis used thematic analysis informed by a critical psychology theoretical framework.Findings: Risk associated with food allergy is an integrated aspect of the youth life trajectories. The allergy clinic plays a crucial role in how they come to understand and manage risk. Paradoxically, knowledge of risk fosters safety as well as uncertainty. Bodily awareness plays a crucial role in managing food allergy, but minor bodily sensations can trigger anxiety and fear of anaphylaxis. Establishing routines emerges as a key strategy for managing risk, as routines reduce anxiety and facilitate participation in everyday social activities.Conclusion: The study highlights the complexity of managing food allergy in the everyday life of youth. How risk knowledge is translated from the clinic into everyday life varies and impacts risk management strategies in different ways.Implications for Profession and Patients: HCP must address both physical and psychosocial aspects of living with the risk associated with food allergy. Individually tailored risk communication that considers personal circumstances and experiences can help reduce anxiety and support strategies for managing food allergy in everyday life.Impact: Integrating patients' everyday perspectives and risk management into healthcare fosters personalised care. Nurses and doctors should help patients bridge the gap between medical advice and its practical application, addressing both physical and emotional aspects of managing health risks.Reporting Methods: The SRQR guideline for reporting qualitative research.Patient or Public Contribution: Patient representatives were involved in developing the protocol, research questions and study aims.

Introduction: Symptoms of anxiety, eating disorders and social isolation are prevalent among teenagers with food allergy compared to peers without. Treatment of teenagers with food allergy focus on preventing anaphylactic reactions, with little attention to promoting social and emotional well‐being. The aim of the study was to explore young adults' perspectives on everyday life with food allergy during their teenage years to improve future clinical practice.Methods: Critical psychological practice research. During a 2‐day camp the perspectives of 10 young adults (18–23 years) were explored through participant observation and informal interviews. Three follow up interviews were conducted. A co‐researcher group discussed preliminary results, clinical challenges and ways forward.Results: Being together with peers with food allergy was crucial, fostering belonging and normalisation. The shift in responsibility of managing the risk feels overwhelming and stressful during teen age. Self‐understanding was influenced when managing food allergy in social contexts, inducing feelings of burden and isolation. Acceptance and understanding from social relations became important for all participants, and they all underlined desire for being viewed as individuals rather than being defined by their allergy.Conclusion: Support from other peers with food allergy is crucial for the participants. Transition to independently managing risks introduces uncertainty and social constraints, affecting self‐understanding and interactions. Clinicians should prioritise peer support and empower teenagers in managing the risk and psychosocial challenges.

Introduction: Adolescence is a critical stage of rapid biological, emotional and social change and development. Adolescents and young adults (AYA) with asthma and allergies need to develop the knowledge and skills to self‐manage their health independently. Healthcare professionals (HCP), parents and their wider network play an essential role in supporting AYA in this process. Previous work showed significant limitations in transition care across Europe. In 2020, the first evidence‐based guideline on effective transition for AYA with asthma and allergies was published by EAACI.Aim: We herein summarize practical resources to support this guideline's implementation in clinical practice.Methods: For this purpose, multi‐stakeholder Task Force members searched for resources in peer review journals and grey literature. These resources were included if relevant and of good quality and were pragmatically rated for their evidence‐basis and user friendliness.Results: Resources identified covered a range of topics and targeted healthcare professionals, AYA, parents/carers, schools, workplace and wider community. Most resources were in English, web‐based and had limited evidence‐basis.Conclusions: This position paper provides a valuable selection of practical resources for all stakeholders to support effective transitional care for AYA with asthma and allergies. Future research should focus on developing validated, patient‐centred tools to further assist evidence‐based transition care.

Aim: To investigate and gain knowledge about patients’ perspectives on everyday life with mastocytosis and how they experience, understand and manage symptoms and challenges.Background: Indolent systemic mastocytosis (ISM) is a disease characterised by the accumulation and activation of mast cells. Symptoms are diverse and range from mild to severely debilitating or even fatal. It is considered rare but is underdiagnosed due to lack of awareness. Quantitative studies have shown that ISM can negatively impact quality of life. No qualitative studies have described everyday life with the disease.Design: A qualitative interview study taking a phenomenological approach.Methods: Seven qualitative, semi‐structured interviews with adult patients with ISM. The analysis was inspired by Giorgi's phenomenological method. COREQ reporting guidelines were used.Results: Three themes and five subthemes emerged from the analysis. (a) The everyday life with a rare disease, unknown to most people. Being perceived as a hypochondriac in the encounter with the health system. The diagnosis makes a difference. Expert knowledge is important. (b) Living with and handling the invisible and visible symptoms. The visible body. (c) Fearing an attack. Feeling safe and vulnerable at the same time.Conclusion: Patients with ISM are severely affected in their everyday lives, especially in terms of their relationship with family and social network. Symptoms restrict and complicate activities and participation in social contexts, and the fear of an anaphylactic attack is always present. The disease affects patients’ self‐perception and sexuality. The rarity of the disease and general low awareness seems to be of great importance in the encounter with the healthcare system, both before and after diagnosis, and there is a need for expert knowledge, support and care.Relevance for clinical practice: The focus of counselling should not only be on the disease itself, but also on living life with the disease.