ArticleThe British journal of general practice : the journal of the Royal College of General Practitioners2009
People with learning disabilities who have cancer: an ethnographic study.
Article in The British journal of general practice : the journal of the Royal College of General Practitioners, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
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Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.Palliative medicine · 2020Pooled it
- Access to healthcare for people with intellectual disability: a scoping review.Scandinavian journal of public health · 2026Article
- Navigating cancer treatment in people with intellectual disability: a qualitative study of professionals' and family members' perspectives.BMC cancer · 2026Article
- Inequalities in cancer diagnostic outcomes for patients with a learning disability: a retrospective cohort study in England.BMJ oncology · 2026Article
- Allyship in Healthcare for People With Learning Disabilities as a Praxis of Respect, Attention and Collaborative Action.Sociology of health & illness · 2025Article
- The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis.Journal of applied research in intellectual disabilities : JARID · 2025Review
- Cancer Prevention Literacy among Different Population Subgroups: Challenges and Enabling Factors for Adopting and Complying with Cancer Prevention Recommendations.International journal of environmental research and public health · 2023Article
- Dying at home for people experiencing financial hardship and deprivation: How health and social care professionals recognise and reflect on patients' circumstances.Palliative care and social practice · 2023Article
- 'Getting our voices heard in research: a review of peer researcher's roles and experiences on a qualitative study of adult safeguarding policy.Research involvement and engagement · 2022Article
- Patient perception of disease burden in diffuse cutaneous systemic sclerosis.Journal of scleroderma and related disorders · 2020Article
- The management of patients with learning difficulties and testicular cancer: overcoming barriers to improve care.BMJ case reports · 2019Article
- Barriers to accessing cancer services for adults with physical disabilities in England and Wales: an interview-based study.BMJ open · 2019Article
- Long-term condition management in adults with intellectual disability in primary care: a systematic review.BJGP open · 2018Article
- Article
- Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care.Palliative medicine · 2016Article
- Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.BMC palliative care · 2016Article
- Challenges in Diagnosis and Treatment of Lung Cancer in People with Intellectual Disabilities: Current State of Knowledge.Lung cancer international · 2016Review
- 'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.BMC palliative care · 2015Article
- Age and stage at diagnosis: a hospital series of 11 women with intellectual disability and breast carcinoma.BMC cancer · 2014Article
- Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis.Health expectations : an international journal of public participation in health care and health policy · 2010Article
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5 authors.
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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 STUDY: Prospective 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.
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