People with learning disabilities who have cancer: an ethnographic study

Abstract

BackgroundCancer incidence among people with learning disabilities is rising. There have been no published studies of the needs and experiences of people with learning disabilities and cancer, from their own perspective. AimTo provide insight into the experiences and needs of people with learning disabilities who have cancer. Design of studyProspective qualitative study, using ethnographic methods. SettingParticipants' homes, hospitals, nursing homes, and hospices in London and surrounding areas. MethodThe 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. ResultsParticipants' 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. ConclusionUrgent 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.

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

“…For cancer, for example, a diagnosis may be delayed through communication difficulties regarding symptoms with their carers or family members. 100 Alternatively, the data correctly reflect reality, but owing to the premature mortality among adults with ID there is a survivor-type effect within the population with ID. If a significant proportion of younger adults with ID who would have gone on to develop cancer or IHD in later life never reach the advanced age at which these diseases are typically diagnosed within the general population, then the prevalence of these conditions in later life would be lower.…”

Pflege erwachsener Patient(inn)en mit Lern- und Körperbehinderungen im Akutkrankenhaus – ein systematisches Review

“…Eine negativ belastete Haltung gegenüber Menschen mit einer Behinderung hemmt eine vorurteilsfreie Begegnung Pflegender mit Patient(inn)en mit Lernbehinderung; demütigende Verhaltensweisen werden benannt (Gibbs et al, 2008;Tuffrey-Wijne et al, 2009 …”

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Originalarbeit 42Pfl ege 2013; 26 (1): 42 -54 Originalarbeit 49 erlebt werden (Hart, 1998;Hannon, 2004;Webber et al, 2010 (Fox & Wilson, 1999;Gibbs et al, 2008;Lachetta et al, 2011).

Einstellung und Haltung der ProfessionellenEine negativ belastete Haltung gegenüber Menschen mit einer Behinderung hemmt eine vorurteilsfreie Begegnung Pflegender mit Patient(inn)en mit Lernbehinderung; demütigende Verhaltensweisen werden benannt (Gibbs et al, 2008;Tuffrey-Wijne et al, 2009

Originalarbeit 50Die Familie lernbehinderter Patient(inn)en nimmt die Rolle des/der sogenannten Übersetzers/Übersetzerin ein und ermöglicht beziehungsweise unterstützt so die Verständigung zwischen Patient(inn)en und Pflegenden (Buzio et al, 2002; Hemsley & Marsden, 2004, Balandin et al, 2007 Untersuchungen (Webber et al, 2010; 159). Die Einstellung der Pflegenden wurde positiver, je mehr sie sich mit der individuellen Situation der Patient(inn)en befassten (Hannon, 2004 (Gibbs et al, 2008; Hemsley & Marsden, 2004; TuffreyWijne et al, 2009).

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Dying and living with learning disability: will health checks for adults improve their quality of life?

“…This study 1 highlights the need for GPs to engage proactively in supporting patients and their carers, when this diagnosis is made. This will require skills in and knowledge of communication, capacity, and consent issues.…”

“…Adults with learning disability (intellectual disabilities), have the triad of impaired intelligence, reduced ability to cope independently (impaired social functioning), with both starting before adulthood and resulting in a lasting effect on development. An article in this Journal by Tuffrey-Wijne and colleagues explores in depth, mainly by participant observation, the experiences and needs of 13 patients who were terminally ill. 1 In at least 10 of the patients the diagnosis of cancer was delayed. Better access to regular cancer screening programmes has the potential to reduce the incidence of late diagnosis in this group; people with learning disability often fail to attend offered screening services, such as mammography and cervical cytology.…”