Tuffrey-Wijne Irene, Bernal Jane, Jones Amelia, Butler Gary, Hollins Sheila
St. George's, University of London, Department of Mental Health (Learning Disabilities), Jenner Wing, Cranmer Terrace, London SW17 0RE, UK.
Eur J Oncol Nurs. 2006 Apr;10(2):106-16. doi: 10.1016/j.ejon.2005.05.005. Epub 2005 Oct 6.
Many people with intellectual disabilities will be affected by cancer in their lifetime. There is a lack of available knowledge about people with intellectual disabilities' understanding and experience of cancer, and about their need for cancer information. The principal aim of the study was to explore the information needs of people with intellectual disabilities who are affected by cancer. This was a qualitative, hypothesis generating study. Nine people with intellectual disabilities who were affected by cancer were identified using a purposive sampling method; five of these participated in the study. Data collection included observation of the use of a pictorial cancer information book designed for people with intellectual disabilities, and semi-structured interviews. Data analysis revealed three themes: (1) "Nobody told me": the desperate need for cancer information; (2) "That reminds me": telling my own story; and (3) "I don't know much about cancer": the difficulties of the staff supporting people with intellectual disabilities to read the cancer information book. The people with intellectual disabilities in this study were not provided with information about cancer. They wanted this information, and appeared to be capable of comprehending it. Further development of accessible information materials around cancer and palliative care is needed.
许多智障人士在其一生中会受到癌症的影响。目前缺乏关于智障人士对癌症的理解和体验，以及他们对癌症信息需求的可用知识。该研究的主要目的是探索受癌症影响的智障人士的信息需求。这是一项定性的、生成假设的研究。采用目的抽样法确定了9名受癌症影响的智障人士，其中5人参与了研究。数据收集包括观察一本为智障人士设计的癌症图文信息手册的使用情况，以及进行半结构化访谈。数据分析揭示了三个主题：（1）“没人告诉我”：对癌症信息的迫切需求；（2）“这让我想起”：讲述我自己的故事；（3）“我对癌症了解不多”：工作人员帮助智障人士阅读癌症信息手册时遇到的困难。本研究中的智障人士没有获得癌症相关信息。他们想要这些信息，而且似乎有能力理解这些信息。需要进一步开发关于癌症和姑息治疗的无障碍信息材料。
