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

背景随着普通人群和残疾人预期寿命的增加，癌症等与年龄相关的疾病的发病率也在不断增加。关注癌症残疾患者医疗保健的全国性研究很少见。国际研究主要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。虽然目前迫切需要采取行动，尤其是由于联合国《残疾人权利公约》(UN DRC)规定的不受残疾歧视的最大健康权利，但许多问题仍未得到解答，如残疾人特有的障碍、信息要求和沟通困难。本项目提案的目的是确定乳腺癌残疾患者经历的残疾特有障碍、沟通困难和信息需求。方法在定性研究中，通过结构化指南访谈的方法确定已被官方确定为残疾的乳腺癌患者的残疾特有障碍、沟通困难和信息需求。将有30名不同残疾、既往疾病和教育水平的患者接受采访，时间大约是在原发性乳腺癌手术后1-2个月。患者按选择性抽样法进行选择。采访被数字化录制，然后转录和分析。根据所描述的经验，将得出针对残疾的障碍和信息要求。预期结果乳腺癌患者在身体、精神、智力、感觉或多种残疾方面有不同的需求。研究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护理过程中的残疾(沟通)障碍和信息需求。讨论：该研究项目有助于乳腺癌残疾患者的需求导向医疗。这一发现应加强乳腺癌残疾患者的健康能力和自主性，并将残疾人的需求置于卫生保健研究的重点。特别是在人口结构变化和联合国刚果民主共和国需求的背景下，这一项目显得尤为重要

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