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Establishing & Addressing the palliative care needs of people with advancing neurological illnesses
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Authors: Mags Rogers, Neurological Alliance of Ireland, Marie Lynch, Irish Hospice Foundation,
John Weafer, Weafer Research Associates, Deirdre Shanagher, Irish Hospice Foundation.
Over 700,000 people in Ireland are living with an advancing neurological illness, many of which are life limiting. In 2008, the “Palliative Care for All” report highlighted the rationale of palliative care for people with non-malignant illnesses. In response, the Neurological Alliance of Ireland (NAI) and the Irish Hospice Foundation (IHF) commenced a study addressing the palliative care needs of people with advancing neurological disease in 2013*.
Establishing & Addressing the Palliative Care Needs of People
with Advancing Neurological Disease in Ireland
Aim & Objectives
Next Steps
Introduction/Context
Participants noted that the palliative
approach to care needs to particularly
address the following patient needs:
Psychosocial
Nutritional
Equipment provision
Advance care planning
May 2014
Methods
14 interviews were carried out with
the following 7 NAI member
organisations:
• Brain Tumour Ireland.
• Cheshire Ireland.
• Huntington Disease Association of Ireland.
• Multiple Sclerosis Ireland.
• Motor Neurone Disease Association of
Ireland.
• Parkinson’s Association of Ireland.
• Progressive Supranuclear Palsy Association
(PSPA) Ireland
The data was analysed and
themes identified by using the
computer programme NVivo.
Findings
2: Investigate
how palliative
care needs are
identified
1: Investigate
understanding of
palliative care
3: Provide a greater
understanding of
the palliative care
needs of this group
4: Provide direction
for the requirements
to respond to needs
Study Aim: To explore &
identify the palliative care
needs of people with
advancing neurological
disease from the
perspective of NAI
member organisations
Participants noted that it can be
difficult to:
Access specialist palliative care
services
Discuss Palliative care matters
openly
Determine when to introduce the
palliative care approach
Include the palliative care approach
as part of routine care
Participants expressed that they
would like more:
Education
Awareness raising
Information, support and advice
In response, informational webpages have been developed and can be accessed via the Irish Hospice
Foundation web site: www.hospicefoundation.ie
This work provides direction for future research into the palliative care needs of people with advancing
neurological illnesses.
The findings provide direction for the formation of HSE policy guidelines with regard to meeting the palliative
care needs of people with and advancing neurological illness.
For further details contact [email protected]; [email protected];
[email protected] or www.hospicefoundation.ie
*The full report of the work will be available in Summer 2014 via the IHF website:
www.hospicefoundation.ie
