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Exploring the lived experiences of people with learning disabilities who are dying of cancer
Irene Tuffrey-Wijne1, Jane Bernal, Jane Hubert
1St George's, University of London.
Background:
Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer.
Aim:
To explore the experiences of people with learning disabilities who have cancer.
Method:
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.
Conclusion:
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.
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