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People with learning disabilities who have cancer: an ethnographic study
- Authors:
- TUFFREY-WIJNE Irene, et al
- Journal article citation:
- British Journal of General Practice, 59(564), July 2009, pp.503-509.
- Publisher:
- Royal College of General Practitioners
Cancer incidence among people with learning disabilities is rising. This study aimed to provide insight into the experiences and needs of people with learning disabilities who have cancer. A prospective qualitative study was carried out using ethnographic methods. The participants were 13 people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. The main method of data collection was participant observation (over 250 hours). The median length of participation was 7 months. Participants' cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system. This could lead to delayed cancer diagnosis and a lack of treatment options being offered. Most participants were not helped to understand their illness and its implications. Doctors did not make an assessment of capacity, but relied on carers' opinions. The authors conclude that urgent action is warranted by findings of late diagnosis, possible discrimination around treatment options, and lack of patient involvement and assessment of capacity in decision making. There are significant gaps in knowledge and training among most health professionals, leading to disengaged services that are unaware of the physical, emotional, and practical needs of people with learning disabilities, and their carers.
Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities
- Authors:
- TUFFREY-WIJNE Irene, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.231-242.
- Publisher:
- Wiley
The aim of this study was to develop guidelines for decisions about (non-) disclosure of bad news around life-limiting illness and death to people with intellectual disabilities, by examining stakeholders' preferences (and reasons) around disclosure and non-disclosure. Focus groups and interviews were held with 109 participants: people with intellectual disabilities, family carers, intellectual disabilities professionals and medical healthcare professionals. People with intellectual disabilities had wide-ranging views about disclosure. Reasons for non-disclosure included: preventing distress; too difficult for the bearer of bad news; the bearer of bad news lacks knowledge; inability to understand; no sense of time; conflicting views among stakeholders. Reasons for disclosure included: a right to know; knowledge helps the person cope; need for involvement. The authors conclude that disclosure of bad news could cause harm in some situations, but this needs careful assessment. They then present guidelines for disclosure that now need to be tested in practice. (Edited publisher abstract)