N25 "I Felt So Alone” Exploration of experience of being newly diagnosed with inflammatory bowel disease: a phenomenological study

Abstract

Abstract Background Individuals recently diagnosed with Inflammatory bowel Disease (IBD) often have unmet informational and psychological needs, leading to distress and anxiety. This lack of support negatively affects their quality of life, mental health, social functioning, and physical outcomes. Additionally, the absence of counselling and peer support isolates many people and places an emotional burden on them. Delayed diagnosis or misdiagnoses due to symptoms being dismissed by health professionals exacerbate the problem. Acknowledging these unmet needs and adverse outcomes, this study aims to shed light on patients' experiences to inform improvements in clinical practice, support services, and workplace policies, particularly during the immediate diagnosis phase. Aim The aim of this study is to explore the experience of people newly diagnosed with IBD and their need for support. Methods The study employed interpretive phenomenology semi-structured interviews following a topic guide and analysed the data using Braun & Clark's (2023) thematic analysis method and Nvivo software. Crohn's and Colitis UK (CCUK) charity acted as the gatekeeper for access to participants. Participants were purposively selected on specific criteria: IBD diagnosis ≤1 year, aged 16 or older, English language proficiency and diversity of demographic and clinical variables. Results Of 49 volunteers who responded to the research advertisement, 15 were selected based on eligibility criteria. Participant characteristics are shown in Table 1. Four themes emerged (Fig 1), with 12 subthemes. Participants expressed extreme dissatisfaction, either due to misdiagnosis or diagnostic delays, indicating the need for timely streamlined diagnosis. Additionally, IBD diagnosis itself triggered distress and anxiety. Participants reported the need for continuous psychological counselling and peer support. Due to symptoms like blood loss and diarrhoea, IBD profoundly affects physical health, emotional wellbeing, social interactions, and work-life balance, hence challenging patients' sense of normalcy. However, patients demonstrated resilience via lifestyle adjustments, social support networks, and coping strategies. Conclusion This qualitative study sheds light on the profound impact of an IBD diagnosis. It reveals emotional struggles and the need for streamlined diagnosis and psychological support. Lifestyle disruptions affect physical and mental health, but participants adapt through support and coping. These insights have practical implications for improving care, mental health services, workplace adjustments, social support, and coping resources for the newly diagnosed IBD population. Future research should expand to larger, diverse patient samples. Table 1: