Alexakis Christopher, Nash Avril, Lloyd Michele, Brooks Fiona, Lindsay James O, Poullis Andrew
Department of Gastroenterology, St George's Hospital, London, UK.
Centre for Research in Primary and Community Care (CRIPACC), School of Health and Social Work, University of Hertfordshire, Hertfordshire, UK.
Health Soc Care Community. 2015 Nov;23(6):665-72. doi: 10.1111/hsc.12188. Epub 2015 Feb 9.
There is strong evidence indicating that inflammatory bowel disease (IBD) is increasing among black and minority ethnic (BME) communities. Despite this rise in prevalence, there is a paucity of research relating to ethnicity and IBD outside the USA. Furthermore, the symptoms of IBD are reported to start during childhood or adolescence in 20-25% of people with the condition. It is therefore important that young people's experiences of diagnosis, treatment and living with IBD are fully understood to ensure effective services and information provision. The study reported on in this paper was commissioned by a UK charity (Crohn's and Colitis UK) with the aim of increasing understanding of the specific issues and service needs of young people with IBD from BME communities. Empirical research entailed in-depth semi-structured interviews with 20 young people from BME groups accessed through gastroenterology departments at three collaborating NHS hospitals in England serving ethnically diverse populations. Interviews were carried out from June to December 2010 and sought to capture young people's views with IBD. A thematic analysis of their experiences identified many commonalities with other young people with IBD, such as the problematic route to formal diagnosis and the impact of IBD on education. The young people also experienced tensions between effective self-management strategies and cultural norms and practices relating to food. Moreover, the ability of parents to provide support was hampered for some young people by the absence of culturally competent services that were responsive to the families' communication needs. The findings highlight the need for more culturally appropriate information concerning IBD, and improved responsiveness to young people with IBD within primary care and the education system, as well as culturally competent messaging relating to the specific nature of the condition among the wider South Asian and black communities.
有强有力的证据表明，炎症性肠病（IBD）在黑人和少数族裔（BME）群体中的发病率正在上升。尽管患病率有所上升，但在美国以外，关于种族与IBD的研究却很少。此外，据报道，20%-25%的IBD患者在儿童期或青春期开始出现症状。因此，充分了解年轻人在IBD诊断、治疗和生活方面的经历，对于确保提供有效的服务和信息至关重要。本文所报道的这项研究是由一家英国慈善机构（英国克罗恩病与结肠炎协会）委托开展的，目的是增进对来自BME群体的IBD青少年所面临的具体问题和服务需求的了解。实证研究包括对20名来自BME群体的年轻人进行深入的半结构化访谈，这些年轻人是通过英格兰三家合作的国民保健服务（NHS）医院的胃肠病科找到的，这些医院服务于不同种族的人群。访谈于2010年6月至12月进行，旨在了解年轻人对IBD的看法。对他们经历的主题分析发现，他们与其他IBD青少年有许多共同点，比如正式诊断的困难过程以及IBD对教育的影响。这些年轻人在有效的自我管理策略与与食物相关的文化规范和习俗之间也经历了矛盾。此外，由于缺乏能够满足家庭沟通需求的具有文化能力的服务，一些年轻人的父母提供支持的能力受到了阻碍。研究结果凸显了需要提供更多关于IBD的文化上合适的信息，以及在初级保健和教育系统中改善对IBD青少年的响应能力，同时在更广泛的南亚和黑人社区中提供与该疾病具体性质相关的具有文化能力的信息。
