Towards Inclusive Colorectal Cancer Screening: Experiences and Needs of Adults With Intellectual Disabilities

IF 3.1 2区医学 Q2 ONCOLOGY

Cancer Medicine Pub Date : 2025-09-04 DOI:10.1002/cam4.71212

Theresa Wagner, Alma R. Herscovici, Amelie Fuchs, Sebastian Kabas, Mara Hilbert, Laura M. König, Matthias Unseld, Elisabeth L. Zeilinger

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Abstract

Introduction

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.

Methods

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.

Results

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.

Conclusion

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.

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迈向全面的结直肠癌筛检：智障成人的经验与需求

智力残疾者（ID）在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。对影响她们参与结直肠癌（CRC）筛查的因素的了解有限，特别是从她们自己的角度来看。本研究旨在从他们自己的经验和观点出发，确定ID人群对包容性CRC筛查计划的障碍、促进因素和需求。方法采用半结构化定性访谈和焦点小组（N = 31）对奥地利境内成年ID患者进行调查。采访和小组讨论都有录音记录，并逐字抄录。专题分析是一种灵活的数据分析方法。结果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)在单独调整的安排和决策范围内的独立性；(2)“当涉及到健康时，我这样做”；(3)增强幸福感；(4)首先看到人，然后是他们的身份；(5)资源和医疗保健系统的缺陷。结论本研究结果揭示了ID患者在医疗保健和预防性癌症护理方面存在的重大障碍。产生了以下实际影响：消除歧视、改善可及性、设计适当的信息和教育材料、对保健专业人员实施强制性的针对身份识别的培训、考虑情绪的重要性和实施针对身份识别的保健服务。在制定包容性癌症筛查规划时考虑到这些方面，对于促进公平的保健和癌症预防至关重要，特别是对边缘化和弱势群体而言。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Cancer Medicine ONCOLOGY-

CiteScore

5.50

自引率

2.50%

发文量

907

审稿时长

19 weeks

期刊介绍： Cancer Medicine is a peer-reviewed, open access, interdisciplinary journal providing rapid publication of research from global biomedical researchers across the cancer sciences. The journal will consider submissions from all oncologic specialties, including, but not limited to, the following areas: Clinical Cancer Research Translational research ∙ clinical trials ∙ chemotherapy ∙ radiation therapy ∙ surgical therapy ∙ clinical observations ∙ clinical guidelines ∙ genetic consultation ∙ ethical considerations Cancer Biology: Molecular biology ∙ cellular biology ∙ molecular genetics ∙ genomics ∙ immunology ∙ epigenetics ∙ metabolic studies ∙ proteomics ∙ cytopathology ∙ carcinogenesis ∙ drug discovery and delivery. Cancer Prevention: Behavioral science ∙ psychosocial studies ∙ screening ∙ nutrition ∙ epidemiology and prevention ∙ community outreach. Bioinformatics: Gene expressions profiles ∙ gene regulation networks ∙ genome bioinformatics ∙ pathwayanalysis ∙ prognostic biomarkers. Cancer Medicine publishes original research articles, systematic reviews, meta-analyses, and research methods papers, along with invited editorials and commentaries. Original research papers must report well-conducted research with conclusions supported by the data presented in the paper.