Exploring the lived experiences of people with learning disabilities who are dying of cancer.
BACKGROUND
Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer.


OBJECTIVE
To explore the experiences of people with learning disabilities who have cancer.


METHODS
The study used participant observation with 13 people with learning disabilities. All had a cancer diagnosis and 10 were terminally ill. Participants were visited regularly at home and in other settings, including hospitals.


RESULTS
The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience.


CONCLUSIONS
To understand the experiences of people with learning disabilities who are dying of cancer, it is important to understand their previous life experiences and key relationships. Healthcare professionals who treat people with respect, dignity and openness can make a positive difference to their care.
Tuffrey-Wijne
Irene
I
St George's, University of London.
Bernal
Jane
J
Hubert
Jane
J
Butler
Gary
G
Hollins
Sheila
S
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002983:Clinical Competence; D005190:Family / Q000523:psychology; D006301:Health Services Needs and Demand; D006801:Humans; D008607:Intellectual Disability / Q000150:complications*; D007859:Learning Disabilities / Q000150:complications*; D008875:Middle Aged; D009369:Neoplasms / Q000209:etiology / Q000523:psychology*; D024802:Nurse's Role / Q000523:psychology; D015404:Nursing Methodology Research; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D013727:Terminal Care / Q000458:organization & administration / Q000523:psychology; D019452:Terminally Ill / Q000523:psychology*; D014342:Truth Disclosure