CAre appropriate to the Needs of breast cancer patients with DisabilitY (CANDY)

背景：一般人口和残疾人预期寿命的延长伴随着癌症等与年龄有关的疾病的日益流行。关注残疾癌症患者医疗保健的全国性研究很少。国际研究主要是调查如何改善残疾人获得保健服务的机会，以及如何解释死亡率的差异。许多问题，如残疾人特有的障碍、信息要求和残疾人之间知识转移方面的沟通困难，仍然没有得到解答，尽管迫切需要在这方面采取行动，尤其是因为《联合国残疾人权利公约》规定了在不受残疾歧视的情况下享有最大健康的权利。本项目提案的目的是确定残疾乳腺癌患者所经历的残疾障碍、沟通困难和信息需求。方法采用定性研究的方法，通过结构化的指南访谈来确定先前正式确定的残疾乳腺癌患者的残疾特异性障碍、沟通困难和信息需求。在原发性乳腺癌手术后大约1-2个月，将对不同残疾、既往疾病和教育水平的患者进行30次访谈。根据选择性抽样法选取患者。这些采访被数字化记录下来，然后进行转录和分析。根据所描述的经验，将得出残疾人特有的障碍和信息要求。预期结果在身体、精神、智力和感官或多重残疾的乳腺癌患者之间，预期有不同的需求。拟建研究项目的结果可以描述德国乳腺癌残疾患者在预防、诊断、决策过程以及治疗和善后过程中的残疾特异性（沟通）障碍和信息需求。讨论建议的研究项目有助于以需求为导向的乳腺癌残疾患者保健。研究结果应加强乳腺癌残疾患者的健康能力和自主性，并将残疾人的需求作为卫生保健研究的重点。特别是在人口变化和联合国-刚果民主共和国的需求的背景下，这个项目显得非常重要

BackgroundIncreasing life expectancy in the general population and in people with disabilities is accompanied by an increasing prevalence of age-related diseases such as cancer. National studies focusing on health care for cancer patients with disabilities are rare. International studies mostly investigate how access to health services can be improved for people with disabilities and how differences in mortality rates can be explained. Many questions, such as disability-specific barriers, information requirements and communication difficulties in the transfer of knowledge among people with disabilities are still unanswered, although there is an urgent need for action here, not least as a result of the UN Disability Rights Convention (UN DRC) under the right to maximum health without discrimination on the grounds of disability.The aim of the present project proposal is to identify experienced disability-specific barriers, communication difficulties and information needs of breast cancer patients with disabilities.MethodIn a qualitative study, disability-specific barriers, communication difficulties and information needs of breast cancer patients with a previously officially determined disability are to be determined by means of structured guideline interviews. There will be 30 interviews with patients with different disabilities, previous diseases and educational levels, approximately 1-2 months after surgery for primary breast cancer. Patients are selected according to the selective sampling method. The interviews are digitally recorded, then transcribed and analysed. Based on the experiences described, disability-specific barriers and information requirements are to be derived. Expected resultsDifferent needs are to be expected between breast cancer patients with physical, mental, intellectual, and sensory or multiple disabilities. The results of the proposed research project can describe the disability-specific (communicative) barriers and information requirements of breast cancer patients with disabilities in the course of prevention, diagnosis, decision-making processes and in the course of therapy and aftercare in Germany.DiscussionThe proposed research project can contribute to demand-oriented health care for breast cancer patients with disabilities. The findings should strengthen the health competence and autonomy of breast cancer patients with disabilities and place the needs of people with disabilities in the focus of health care research. Especially against the background of demographic change and the demand of the UN-DRC, this project seems to be of great importance