title: People with intellectual disabilities and their need for cancer information.
abstract: 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.
authors.affiliation: St. George's, University of London, Department of Mental Health (Learning Disabilities), Jenner Wing, Cranmer Terrace, London SW17 0RE, UK. ituffrey@sgul.ac.uk
authors.forename: Irene
authors.initials: I
authors.lastname: Tuffrey-Wijne
authors.forename: Jane
authors.initials: J
authors.lastname: Bernal
authors.forename: Amelia
authors.initials: A
authors.lastname: Jones
authors.forename: Gary
authors.initials: G
authors.lastname: Butler
authors.forename: Sheila
authors.initials: S
authors.lastname: Hollins
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001296:Audiovisual Aids; D004495:Education of Persons with Intellectual Disabilities; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000150:complications / Q000451:nursing / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000458:organization & administration*; D009369:Neoplasms / Q000150:complications / Q000451:nursing / Q000523:psychology*; D024802:Nurse's Role; D015404:Nursing Methodology Research; D009859:Oncology Nursing; D010174:Pamphlets; D010353:Patient Education as Topic / Q000458:organization & administration*; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support; D011795:Surveys and Questionnaires; D013664:Teaching Materials; D014342:Truth Disclosure; D006113:United Kingdom