School of Psychology, University of Worcester, Worcester WR2 6AJ, UK.
Children's Psychological Medicine, Oxford Children's Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 9DU, UK.
Int J Environ Res Public Health. 2021 Jul 29;18(15):8038. doi: 10.3390/ijerph18158038.
Inflammatory bowel disease (IBD) consists of Crohn's disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: 'The IBD journey' explores the dynamic ways in which having IBD impacted on individuals' self-identity and 'a need to be understood' examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept 'feeling of otherness' highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times.
炎症性肠病（IBD）包括克罗恩病和溃疡性结肠炎，是一种涉及胃肠道炎症和溃疡的慢性疾病。IBD 患者可能容易受到与健康相关的污名的影响：经历、感知或内化的社会排斥、拒绝、指责或因基于疾病的负面社会判断而产生的贬值。这项定性研究综合了 38 项描述患者生活经历的研究结果，旨在对 IBD 患者的污名体验形成一个统一的解释性描述。分析得出了两个类别：“IBD 之旅”探讨了患有 IBD 如何对个人的自我认同产生影响的动态方式；“需要被理解”则考察了希望被理解的同时，又感到自己的真实经历需要被社交圈隐瞒或被误解的紧张关系。总体概念“与众不同的感觉”强调，个体并不是处于一种静态的、二元的体验中，而是在从被排斥和被视为异类的体验，到被包容的体验之间不断移动。个体在不同的身体、社会和健康环境中沿着这个连续体波动。通过疾病披露与有价值的人重新建立联系，适应应对经验，对 IBD 的心理调整，在更具挑战性的时期增强了对污名的抵抗力。
