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Table 1 General overview of the cases: the deceased people and the interviewees

From: ‘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

  Relatives interviewed Professional caregivers interviewed
Case 1: female, died from dementia, moderate intellectual disability 1 mentor 1 nurse
(a friend) 1 ID physician
  1 psychologist
Case 2: female, died from metabolic disease, severe/profound intellectual disability 1 mother 2 social workers1
1 nurse
1 GP
Case 3: female, died from kidney failure and heart failure, mild intellectual disability 1 sister 1 social worker
1 brother-in-law 1 GP
Case 4: male, died from cancer, mild intellectual disability 1 sister 1 social worker
1 brother-in-law 1 nurse specialized in palliative care
1 GP
Case 5: female, died from cancer, mild intellectual disability   1 social worker
1 nurse
Case 6: male, died from cancer, severe/profound intellectual disability 1 sister 1 social worker
1 ID physician
Case 7: male, died from metabolic disease, severe/profound intellectual disability 1 mother 1 social worker
1 nurse
1 ID physician
Case 8: male, died from cancer, mild/moderate intellectual disability 1 sister 2 social workers
1 ID physician
Case 9: male, died from cancer, mild intellectual disability 2 sisters 1 social worker
1 hospice coordinator
Case 10: female, died from dementia, moderate intellectual disability 1 brother 1 nurse
1 ID physician
Case 11: male, died from frailty in old age, severe/profound intellectual disability 1 brother 1 social worker
1 end-of-life care consultant2
Case 12 female, died from cancer, moderate intellectual disability 1 sister 2 social workers
1 ID physician
Total 16 29
  1. 1In the Netherlands, social workers who work in ID care services provide support to people with ID in their daily lives. These social workers usually have an associate degree in socio-pedagogical support
  2. 2The end-of-life care consultant in this case was a nurse from the ID care service, specialized in end-of-life care, who advises teams of nurses and social workers on how to provide end-of-life care