Knowledge and attitudes of intellectual disability and palliative care by specialist palliative care teams and ID carers in Kent

People with intellectual disability (ID) have been
shown to have increased health and palliative care
needs as they grow older, including progressive
diseases such as cancer, heart and respiratory disease
and dementia. There is evidence of limited palliative
care provision for ID patients.
Aims: The aim of these two studies was to investigate
the knowledge and attitudes of both specialist
palliative care providers of ID and paid carers of ID of
each other´s specialism, with the objective of
delineating whether such attitudes or systems reduce
the palliative care of people with ID.
Methods: A series of focus groups were held with
specialist palliative care teams and formal carers of
people with ID to ascertain their knowledge,
perceptions and attitudes of ID and palliative care
services.
Results: The data showed that involvement of
specialist palliative care services for people with
intellectual disability was small. Palliative care
specialists expressed the view that their training and
knowledge of this patient group is also low, resulting
in anxieties as to how to adequately care for this
patient group.
Similarly there was also little understanding of
palliative care services by ID services, and carers
shared concerns that palliative care services may not
always wish to or were not always appropriately able
to care for people with ID.
Conclusion: Shared education of specialist palliative
care providers and ID carers is necessary to increase
mutual understanding, so that care can be provided
in a collaborative way. Whilst there may be no
obvious discrimination against these patients there is
a need for greater awareness of ID amongst staff, at all
levels, so that the needs of people with ID can be
addressed adequately, and appropriately. The
development of links between teams was felt to improve liaison and understanding, with the aim of
improving the quality of life of ID clients with
progressive disease.