Wagner Theresa, Herscovici Alma R, Fuchs Amelie, Kabas Sebastian, Hilbert Mara, König Laura M, Unseld Matthias, Zeilinger Elisabeth L
Department of Clinical and Health Psychology, Faculty of Psychology, University of Vienna, Vienna, Austria.
Division of Hematology and Hemostaseology, Department of Medicine I, Medical University of Vienna, Vienna, Austria.
Cancer Med. 2025 Sep;14(17):e71212. doi: 10.1002/cam4.71212.
People with intellectual disabilities (ID) face significant barriers to healthcare and preventive cancer care, resulting in delayed cancer diagnosis and higher mortality rates. There is limited understanding of the factors that influence their participation in colorectal cancer (CRC) screening, particularly from their own perspectives. This study aimed to identify the barriers, facilitators, and needs of people with ID for an inclusive CRC screening programme from their own experiences and viewpoints.
Semi-structured qualitative interviews and focus groups (N = 31) were conducted with adults with ID in Austria. Interviews and group discussions were audio recorded and transcribed verbatim. Thematic analysis was used as a flexible method to analyse the data.
Five themes were identified from the data with each consisting of two to four sub-themes: (1) independence within individually adjusted scopes of arrangement and decision-making, (2) 'When it comes to health, I do it', (3) enhancing wellbeing, (4) seeing the person first, then their ID, and (5) deficits in resources and the healthcare system.
The findings reveal significant barriers to healthcare and preventive cancer care for people with ID. The following practical implications were derived: Eliminating discrimination, improving accessibility, designing appropriate information and educational materials, implementing mandatory ID-specific training for health professionals, considering the importance of emotions and implementing ID-appropriate health services. Considering these aspects when developing inclusive cancer screening programmes is of paramount importance to promote equitable health and cancer prevention, especially for marginalised and vulnerable groups.
智障人士在获得医疗保健和预防性癌症护理方面面临重大障碍，导致癌症诊断延迟和死亡率较高。对于影响他们参与结直肠癌（CRC）筛查的因素，尤其是从他们自身角度的了解有限。本研究旨在从智障人士自身的经历和观点出发，确定他们参与包容性CRC筛查计划的障碍、促进因素和需求。
对奥地利的成年智障人士进行了半结构化定性访谈和焦点小组访谈（N = 31）。访谈和小组讨论进行了录音，并逐字转录。采用主题分析法作为灵活的方法来分析数据。
从数据中确定了五个主题，每个主题由两到四个子主题组成：（1）在个体调整的安排和决策范围内的独立性，（2）“说到健康，我就去做”，（3）增进福祉，（4）先看人，再看其智障身份，（5）资源和医疗保健系统的不足。
研究结果揭示了智障人士在获得医疗保健和预防性癌症护理方面的重大障碍。得出了以下实际意义：消除歧视、提高可及性、设计合适的信息和教育材料、为卫生专业人员开展针对智障人士的强制性培训、考虑情感的重要性以及实施适合智障人士的卫生服务。在制定包容性癌症筛查计划时考虑这些方面对于促进公平的健康和癌症预防至关重要，特别是对于边缘化和弱势群体而言。
